paraneoplastic disease

Question:

Suzanne, I’m sorry I can’t offer information on your eye diagnosis, but I can certainly symphatize with you when it comes to eye problems. I have had terrible double vision (vertical diplopia) since cataract surgery last Dec 22nd and it’s been a constant hinderance since. Doc said removing dense cataract from other eye would solve problem, but of course it didn’t. Found out it’s eye muscle damage from the anesthetic injection and will require surgery–maybe several–to try to realign my vision again. I’ve had to keep one eyeglass lens occluded so I use only one eye since 12-22. This situation has nothing at all to do with my cancer, but it has moved up to No. 1 in terms of doc. appts and worry about upcoming eye surgeries. I learned a lot from going to Google.com and searching for info just starting with the simple terms, then one bit of info leads to another. I imagine you’ve tried this. Maybe even searching your chemo regime and eye problems, but this may not have anything to do with cancer treatments. I’ve never heard of your diagnosis either so I hope your doctor will be more forthcoming and answer your questions patiently. I hate it when docs give us the brush off like it’s not important that we, the patient with the condition, don’t need complete understanding of what we are dealing with. I hope there will be a treatment that will improve your vision. Right now I can very much relate to vision problems. Kathie

Response:

Hi,  I have been reading here for a few months, but am writing for the first time.  I was diagnosed with breast cancer a year ago.  Stage II whith no lymph node involvment.  I received 7 courses of chemotherapy and I chose to have a double mascectomy with reconstruction.  I have my permanent implants now, but require one more reconstruction surgery. I have also been having trouble reading at least for the past few months.  Glasses did not correct the problem.  I finally went to some sort of eye specialist.  He thinks I may have paraneoplastic disease and has ordered more testing. He also called it optic atrophy on a different piece of paper. The doctor would not expand on his definition or answer questions until he receives all of the test results.  I obtained the names by looking at the referrals he gave me for the tests.  I was able to read a little bit from internet, but couldn’t find much information.  It will probably take me a few weeks to complete the testing and find out for sure what is wrong.  I would like to know if any readers have had this diagnoses and what they have experienced.  I am very anxious and have a sense of impending doom, worse than when I was told of the cancer.  I am waiting and anticipating the worst even though I don’t know.  I would be grateful for any information.

Response:

speaking of, where is Jennifer?

Question:

– Hide quoted text — Show quoted text – Jennifer Lehman died yesterday.  She was at home with her family and her death was peaceful.  She had a steady stream of visitors (friends and family) since getting sick. Jennifer was a great friend.  She was intelligent and considerate.  She had a wonderful sense of humor.  Her opinions were carefully reasoned. She was respectful to others, even those that she disagreed with. Jennifer has a Ph.D. in comparative literature.  She was teaching writing at the University of Texas when she got sick.  Jennifer volunteered for countless hours at her children’s school.  She organized fundraisers.  She planned to lead her daughter’s brownie troop. Jennifer’s sister (Catharine Honeyman) died last spring and her mother died soon after.  About a week later, Jennifer found tumors in her liver. She was diagnosed with colon cancer that had already spread.  Jennifer went to MD Anderson for treatment.  She had the best available chemo.  When it failed, she participated in a clinical trial.  Unfortunately, her tumors continued to grow too quickly. When Jennifer ran into a problem, she would research the matter, figure out the best course of action, and find the solution.  I desperately wanted to believe that her usual approach would work again.  This time, she never had a chance.  She lived for barely four months after her diagnosis. Jennifer leaves behind a loving husband and two young children (ages 4 and 6.)  She and her husband had been together since high school.  As she was dying, her husband reassured her that they would be ok.  As he said, the kids are doing great.  She gave them a wonderful start.  Jennifer and Catharine also had a brother.  Right after Jennifer was diagnosed with colon cancer, her brother had a colonoscopy.  His polyps were removed and he should be fine.  Jennifer’s children will also have early colonoscopies. Life is so unfair.  Jennifer and her family deserved better. I miss her.

I’ve been a lurker for a long while and have followed her story since Catherine’s passing. I have prayed for Jennifer. This just makes me so very sad. Although I didn’t know her at all and she had never even heard my name, I know the world has lost a very special person. Tonight I will be lifting her husband and children up in prayer. My only thought and I know not everyone shares the religious faith that I have, but my only thought was that how happy Catherine must have been to see Jennifer when she passed. They both have been an inspiration to me, someone they never knew. Rhonda

Response:

Betsy..[?] I’m so very sorry that this has happened. Catharine was a very important and vital member of this group and is terribly missed by all of us here. Jennifer was only with us here a very short time. But we knew that she was very strong, and very special even though we never met her. I can’t even imagine the sorrow that this family must be going through having lost 3 family members in less then a years time. Please extend to her family my profound sadness at Jennifer’s passing. Please also except my sympathy for the loss of your friend. This is truly a terrible loss to all that knew her or had contact with her. My heart is just breaking for her little ones that they are without her now at such a young age. I along with others didn’t realize how young she was. Catharine spoke of her "nephews" in alot of her postings. And the loss of 3 relatives in such a short period of time must be just heart wrenching. My thoughts and prayers go out to the family and others who knew her. She will also be missed. Both will remain in our hearts. Take care there. May God bless you all and hold you all safe in the palm of His hand. annie Ultimately…..we know deeply that the other side of every fear is a freedom. "Courage"…is *fear* that has said it’s prayers.

Response:

Jennifer Lehman died yesterday.  She was at home with her family and her death was peaceful.  She had a steady stream of visitors (friends and family) since getting sick. Life is so unfair.  Jennifer and her family deserved better. I miss her.

i’m so sorry to hear of more sad news for this family. it’s a little hard to comprehend… my thoughts go out to you at this time. you are a good friend to post the news here. i hope the family gets a break now. i’m frankly speechless. my deepest sympathies- -christina

Response:

Betsy, it is so hard to imagine…so unbelievable.  Please give her husband and family my condolences, prayers, and {{{hugs}}}.  May she rest in peace…

Response:

Dear Betsy, Catharine and Jennifer were remarkable people and our group has been blessed to have know them.  Tragically short lives….profoundly impacting a great many people.  My condolences to Jennifer’s family and to you.  Thank you for letting us know. Barb

Response:

This is truly very sad news. I cant even begin to imagine what Jennifer’s family must be going through at this time. All my thoughts and prayers are with them at this difficult time. God bless. Jayu

Response:

From Jennifer’s phd thesis (acknowledgement section)… Others have contributed at the non-academic end of the project:  my mother-in-law, Carol, with her trips to the Library of Congress and numerous babysittings, was an invaluable help.  And my dear husband Ty became Mr. Mom for months of weekends while I descended into dissertation inferno, trying to ignore the domestic chaos swirling outside.  I could not have finished without his gift of time.  But above all, it is my beloved sister, Catharine, who supplied this study’s sine qua non:  her determined battle against breast cancer, along with her challenge that I grapple with my dissertation for the duration of her second encounter with chemotherapy, after her cancer has metastasized, provided perspective for my project and inspired me to bring it to completion.

Response:

– Hide quoted text — Show quoted text – From Jennifer’s phd thesis (acknowledgement section)… Others have contributed at the non-academic end of the project:  my mother-in-law, Carol, with her trips to the Library of Congress and numerous babysittings, was an invaluable help.  And my dear husband Ty became Mr. Mom for months of weekends while I descended into dissertation inferno, trying to ignore the domestic chaos swirling outside.  I could not have finished without his gift of time.  But above all, it is my beloved sister, Catharine, who supplied this study’s sine qua non:  her determined battle against breast cancer, along with her challenge that I grapple with my dissertation for the duration of her second encounter with chemotherapy, after her cancer has metastasized, provided perspective for my project and inspired me to bring it to completion.

Thank you for that, I’m moved as I’m sure others will be. We wouldn’t have known about it if you hadn’t posted. Mary – Hide quoted text — Show quoted text –

Response:

Dear Betsy I was so saddened  to hear about Jennifer. She and Catherine were so brave and  so very special. i  have been so worried about her. Please tell her husband and children , my love and prayers go out to them. Love Cathi

Response:

So sorry, It is sad that a family has lost two vibrant members. Thanks for posting, Alex —

– Hide quoted text — Show quoted text – Jennifer Lehman died yesterday.  She was at home with her family and her death was peaceful.  She had a steady stream of visitors (friends and family) since getting sick. Jennifer was a great friend.  She was intelligent and considerate.  She had a wonderful sense of humor.  Her opinions were carefully reasoned. She was respectful to others, even those that she disagreed with. Jennifer has a Ph.D. in comparative literature.  She was teaching writing at the University of Texas when she got sick.  Jennifer volunteered for countless hours at her children’s school.  She organized fundraisers.  She planned to lead her daughter’s brownie troop. Jennifer’s sister (Catharine Honeyman) died last spring and her mother died soon after.  About a week later, Jennifer found tumors in her liver. She was diagnosed with colon cancer that had already spread.  Jennifer went to MD Anderson for treatment.  She had the best available chemo.  When it failed, she participated in a clinical trial.  Unfortunately, her tumors continued to grow too quickly. When Jennifer ran into a problem, she would research the matter, figure out the best course of action, and find the solution.  I desperately wanted to believe that her usual approach would work again.  This time, she never had a chance.  She lived for barely four months after her diagnosis. Jennifer leaves behind a loving husband and two young children (ages 4 and 6.)  She and her husband had been together since high school.  As she was dying, her husband reassured her that they would be ok.  As he said, the kids are doing great.  She gave them a wonderful start.  Jennifer and Catharine also had a brother.  Right after Jennifer was diagnosed with colon cancer, her brother had a colonoscopy.  His polyps were removed and he should be fine.  Jennifer’s children will also have early colonoscopies. Life is so unfair.  Jennifer and her family deserved better. I miss her.

Response:

From the Sunday, November 14, 2004 Austin American Statesman newspaper… Jennifer S. Lehman Family-Placed Obituary Jennifer S. Lehman Jennifer S. Lehman, age 36, passed away Wednesday, November 10, 2004, after an admirable and courageous battle with cancer. Jennie accomplished much in her short life. She obtained her undergraduate and Masters degrees from Texas Tech University in Psychology and French, respectively. She continued her quest for knowledge at the University of Texas at Austin where she earned her Doctorate in Comparative Literature. She then went to work at U.T., teaching and advising students. Even more importantly, during these same years, she married the love of her life and they were blessed with two beautiful children. Jennie was a quiet force of nature. She tackled life with grace: a soft voice and a resolve of steel. She leaves to cherish her memory: husband, Ty; children, Hannah and Teddy; father, Peter Shootman and wife, Sally; brother, Alex Shootman and wife, Brettne; two nephews, Will and Sam; sister-in-law, Tina Burkhart and husband, Dan; mother-in-law and father-in-law, Terry and Carol Lehman. A Memorial Service will be held on Monday, November 15, 2004, in the Memorial Chapel of Cook-Walden/Capital Parks Funeral Home in Pflugerville. Memorial Contributions may be made to Wonders & Worries, Inc., 923 Westbank Dr., Ste. C, Austin, TX 78746. This organization is dedicated to children with a serious illness or with a family who has a serious illness. Jennie laughed easily, loved fully, and she will be sorely missed.

Response:

Jennifer Lehman died yesterday…

A truly sad day. Travel well, Jennifer – and thank you for your courage, your wit and your gentle spirit.  We only knew you for a short time, but you definitely left your mark here. Hug Catharine for all of us.

Response:

Jennifer Lehman died yesterday.  She was at home with her family and her death was peaceful.  She had a steady stream of visitors (friends and family) since getting sick.

I’ve just found this, Betsy…thank you so much for this posting…I only knew Jennifer and Catharine through their postings here but having known them, even in this fashion, has changed my life immeasurably–they were both such incredible role models.  It makes me so sad to know that they are both no longer with us.  Please let Jennifer’s family know how saddened we all are by this news. Catherine C.

Response:

Betsy, Thanks for letting us know. We met Jennifer when she was in such pain and crisis. It is a small relief to know that she is at peace. It was helpful to learn a little bit more about the rest of her life. I hope that you pass on our best wishes to her husband and kids. What a hard time for them and for you. Life is unfair.

Absolutely.  Someone ought to be doing a research study of this horribly unfortunate family. Eva

Response:

Jennifer Lehman died yesterday.  She was at home with her family and her death was peaceful.  She had a steady stream of visitors (friends and family) since getting sick.

… Life is so unfair.  Jennifer and her family deserved better. I miss her.

Thank you for letting us know. Life does seem to have seriously had it in for her family of late. I am glad that Jennifer is now free from pain, nausea and all the other unpleasantness surrounding her disease. Tim Jackson

Response:

Betsy, Thanks for letting us know. We met Jennifer when she was in such pain and crisis. It is a small relief to know that she is at peace. It was helpful to learn a little bit more about the rest of her life. I hope that you pass on our best wishes to her husband and kids. What a hard time for them and for you. Life is unfair. Chris In article – Hide quoted text — Show quoted text – Jennifer Lehman died yesterday.  She was at home with her family and her death was peaceful.  She had a steady stream of visitors (friends and family) since getting sick. Jennifer was a great friend.  She was intelligent and considerate.  She had a wonderful sense of humor.  Her opinions were carefully reasoned. She was respectful to others, even those that she disagreed with. Jennifer has a Ph.D. in comparative literature.  She was teaching writing at the University of Texas when she got sick.  Jennifer volunteered for countless hours at her children

Controlling Nausea

Question:

Hi, hope someone can help. I have stage IV breast cancer, with mets to bone, liver, etc. Any suggestions to control nausea?

What is causing the nausea?  Is this a response to chemotherapy, a reaction to ongoing use of other drugs, or a symptom of the disease? Anti-emetics such as metaclopromide would be a normal starting point if the problem is chronic (as opposed to a chemotherapy response). Tim Jackson

Response:

Always heard that smoking pot helps nausea

Hi, hope someone can help. I have stage IV breast cancer, with mets to bone, liver, etc. Any suggestions to control nausea? Thanks, Gina

Response:

Always heard that smoking pot helps nausea

Maybe it does if you are a smoker in the first place. For non-smokers it is likely to offer the wrong sort of control. Tim Jackson

Response:

Marinol (THC) is good for nausea. I found it a lot easier to take than Zophran and Stemitil. Less side effects. I know it won’t be coming to America too soon. Only in Canada, I think.

– Hide quoted text — Show quoted text – Always heard that smoking pot helps nausea Hi, hope someone can help. I have stage IV breast cancer, with mets to bone, liver, etc. Any suggestions to control nausea? Thanks, Gina

Response:

Hi, hope someone can help. I have stage IV breast cancer, with mets to bone, liver, etc. Any suggestions to control nausea? Thanks, Gina

Response:

Hi, hope someone can help. I have stage IV breast cancer, with mets to bone, liver, etc. Any suggestions to control nausea?

Zofran.  Demand a prescription.  Actually, I’ve heard there are even newer drugs that are better, but Zofran is pretty darn good. Love & Light Tony

Response:

How long to wait for scheduling an appointment for biopsy usually in Toronto?

Question:

If they have diagnosed her with Breast Cancer already – why go for the biopsy? My surgeon was 99% sure my lump was cancer so I did not have a biopsy.  The ultrasound showed a blood supply going to the tumour (4 cm). There is an option of having the lump tested for cancer at the hospital while you are under anesthetic (the doctors do not offer this as it is expensive).  I was offered this because they wanted to remove my lymph nodes during the same operation. Since I was having bilateral surgery, they removed the tumour and sent it for testing while they operated on the other breast. It turned out it was cancer and I had my lymph nodes removed during one operation. By the way, I am from Toronto too – I had a wonderful surgeon – Dr. David Mumford (Trillum Hospital – Mississauga Site). Jennifer

– Hide quoted text — Show quoted text – Hi all: My mum was diagnosed Breast Cancer. We met surgeon and he said he would do an operation in the middle of April this year for her. He told us that my mum need to get a biopsy done before the surgery. He then told the secretary to schedule an appointment for biopsy with First Stage. The secretary told us that she will try to book it asap, but it could takes up to 6 weeks to actually book a biopsy appointment because the biopsy center only does it once a week, and there are many cancer patients. It is already middle of March, and I wonder how she could book us before the surgery take place? My questions are: 1. Does it really take that long to schedule a biopsy appointment? My mum’s tumor is 6X7CM, which we think is quite large already, and the surgeon even said to send for biopsy as First Stage. 2. I was wondering if it is okay to do the surgery without the biopsy exam? Please help me, as I totally don’t know how to find out the answers and are in the stage of panicness. Meanwhile, I am 5 months pregnant. Best regards, Amy

Response:

Well, the surgeon we had met is the head of the surgeon division of Toronto East General Hospital. He examed my mum, asked about the lump, if there were any discharge from nipple, he then said that he was gona to send my mum for a biopsy. So I asked what was his opinion at that point? He said right away that he was pretty sure that it was cancer. That is how I got the idea that my mum has cancer. By doing research online, also reading all the reports that I got from her breast X-ray, ultrasound, I do have a strong feeling that it is cancer. 1. So, it there a need for waiting for biopsy when the operation is around the middle of April? 2. Can they make it on time? 3. Or should we just call them up tell them that my mum is not going to have biopsy if it is still not scheduled till the middle of April, just do the operation? We all are very worried for my mum. She starts having discharges from both nipples yesterday with odour. 4. And I have no idea why both of them have it now, since they only found lump on one of her breast. Thanks for helping out so much folks. Amy – Hide quoted text — Show quoted text – If they have diagnosed her with Breast Cancer already – why go for the biopsy? My surgeon was 99% sure my lump was cancer so I did not have a biopsy.  The ultrasound showed a blood supply going to the tumour (4 cm). There is an option of having the lump tested for cancer at the hospital while you are under anesthetic (the doctors do not offer this as it is expensive).  I was offered this because they wanted to remove my lymph nodes during the same operation. Since I was having bilateral surgery, they removed the tumour and sent it for testing while they operated on the other breast. It turned out it was cancer and I had my lymph nodes removed during one operation. By the way, I am from Toronto too – I had a wonderful surgeon – Dr. David Mumford (Trillum Hospital – Mississauga Site). Jennifer Hi all: My mum was diagnosed Breast Cancer. We met surgeon and he said he would do an operation in the middle of April this year for her. He told us that my mum need to get a biopsy done before the surgery. He then told the secretary to schedule an appointment for biopsy with First Stage. The secretary told us that she will try to book it asap, but it could takes up to 6 weeks to actually book a biopsy appointment because the biopsy center only does it once a week, and there are many cancer patients. It is already middle of March, and I wonder how she could book us before the surgery take place? My questions are: 1. Does it really take that long to schedule a biopsy appointment? My mum’s tumor is 6X7CM, which we think is quite large already, and the surgeon even said to send for biopsy as First Stage. 2. I was wondering if it is okay to do the surgery without the biopsy exam? Please help me, as I totally don’t know how to find out the answers and are in the stage of panicness. Meanwhile, I am 5 months pregnant. Best regards, Amy

Response:

She’s using Microsoft Outlook 6

Ah.  I was in google and didn’t think to look at the raw message. Silly me  ;-) — we see things not as they are, but as we are. — Anais Nin

Response:

Depends on what you use to read newsgroups, Alex  

She’s using Microsoft Outlook 6 Cheers J

Response:

Thanks Allan, I use Outlook express, the person I am trying to block uses a different email with each posting which makes it a bit complicated. I guess I’ll just have to use the delete button. —

– Hide quoted text — Show quoted text – Hi, Could someone help me ? I would like to block certain people’s postings? How do I block them if they don’t use an active email address? For example If I wanted block myself I could in outlook block my email, but many people her use phony addresses , Help ! Thanks Alex Depends on what you use to read newsgroups, Alex   Most newsreaders have some kind of ‘twit filter’ but we’d need to know what you use to read this group before we could tell you what to use to increase your signal to noise ratio  ;-) cheers – allan

Response:

Hi, Could someone help me ? I would like to block certain people’s postings? How do I block them if they don’t use an active email address? For example If I wanted block myself I could in outlook block my email, but many people her use phony addresses , Help ! Thanks Alex

Response:

Hi, Could someone help me ? I would like to block certain people’s postings? How do I block them if they don’t use an active email address? For example If I wanted block myself I could in outlook block my email, but many people her use phony addresses , Help ! Thanks Alex

Depends on what you use to read newsgroups, Alex   Most newsreaders have some kind of ‘twit filter’ but we’d need to know what you use to read this group before we could tell you what to use to increase your signal to noise ratio  ;-) cheers – allan

Response:

Amy, I understand your concerns.  It doesn’t seem ‘right’ that under the circumstances they are waiting this long.  Is there any way you could consult with a private surgeon and oncologist sooner?  I would say go ahead with the operation immediately–although with some types of breast cancer–chemotherapy is now being done before surgery.  I am not a dr. so do think it is important to see a dr. as soon as possible.  Normally, breast cancer is a slow growing cancer, but it can be very aggressive in some, particularly at the later stages.   If I recall correctly, you are in Canada, and there are some private surgeons and dr’ as well.  Again, perhaps you, your sisters and mom could pool your resources together for a second opinion to see what they would recommend re. your  mom’s situation and then proceed from there re April appointment.  So sorry you are dealing with this–take care and wishing your mom all the best.

Response:

When I was first a RN  27 years ago most women went in for surgery not knowing if they would wake up with a breast or not. Now the trend is to biopsy and then put together a treatment plan. For example, your mother because of the size of the tumor could be offered chemo prior to surgery to shrink the tumor in efforts to save her breast. In answer to your question, most tumors have been growing for years therefore a few weeks won’t matter. Emotionally is another issue. Could you mother ask to be place into a waiting list- if any cancellations occur she will fill in. Has she expressed her discomfort in waiting? Alex

Response:

Sorry Amy to hear about your mom, 6 weeks seems to be a long time, but not unreasonable, I would how your mom to  call the surgeon and ask if it can be scheduled any sooner. — ALEXANDRA KOFFMAN

– Hide quoted text — Show quoted text – Hi all: My mum was diagnosed Breast Cancer. We met surgeon and he said he would do an operation in the middle of April this year for her. He told us that my mum need to get a biopsy done before the surgery. He then told the secretary to schedule an appointment for biopsy with First Stage. The secretary told us that she will try to book it asap, but it could takes up to 6 weeks to actually book a biopsy appointment because the biopsy center only does it once a week, and there are many cancer patients. It is already middle of March, and I wonder how she could book us before the surgery take place? My questions are: 1. Does it really take that long to schedule a biopsy appointment? My mum’s tumor is 6X7CM, which we think is quite large already, and the surgeon even said to send for biopsy as First Stage. 2. I was wondering if it is okay to do the surgery without the biopsy exam? Please help me, as I totally don’t know how to find out the answers and are in the stage of panicness. Meanwhile, I am 5 months pregnant. Best regards, Amy

Response:

Hi all: My mum was diagnosed Breast Cancer. We met surgeon and he said he would do an operation in the middle of April this year for her. He told us that my mum need to get a biopsy done before the surgery. He then told the secretary to schedule an appointment for biopsy with First Stage. The secretary told us that she will try to book it asap, but it could takes up to 6 weeks to actually book a biopsy appointment because the biopsy center only does it once a week, and there are many cancer patients. It is already middle of March, and I wonder how she could book us before the surgery take place? My questions are: 1. Does it really take that long to schedule a biopsy appointment? My mum’s tumor is 6X7CM, which we think is quite large already, and the surgeon even said to send for biopsy as First Stage. 2. I was wondering if it is okay to do the surgery without the biopsy exam? Please help me, as I totally don’t know how to find out the answers and are in the stage of panicness. Meanwhile, I am 5 months pregnant. Best regards, Amy

Response:

- Hide quoted text — Show quoted text – Hi all: My mum was diagnosed Breast Cancer. We met surgeon and he said he would do an operation in the middle of April this year for her. He told us that my mum need to get a biopsy done before the surgery. He then told the secretary to schedule an appointment for biopsy with First Stage. The secretary told us that she will try to book it asap, but it could takes up to 6 weeks to actually book a biopsy appointment because the biopsy center only does it once a week, and there are many cancer patients. It is already middle of March, and I wonder how she could book us before the surgery take place? My questions are: 1. Does it really take that long to schedule a biopsy appointment? My mum’s tumor is 6X7CM, which we think is quite large already, and the surgeon even said to send for biopsy as First Stage. 2. I was wondering if it is okay to do the surgery without the biopsy exam? Please help me, as I totally don’t know how to find out the answers and are in the stage of panicness. Meanwhile, I am 5 months pregnant. Best regards, Amy

sometimes breast tissue or lymph nodes are removed by a surgical procedure (and it’s sent to a lab for the pathology). http://www.health.gov.on.ca/english/public/pub/cancer/breast_cancer.html It sounds like she is in Ontario.(or somewhere in Canada) It sounds like they are making the fastest decision for the good of your mother. If it is cancer, get a book by Dr. Susan Love Also the folks here will help you out, Best, J

Response:

Full-Timer Health Care

Question:

lso, I am a 4-year Viet Nam-era veteran; has anybody tried the VA health system? I’m 100% service-connected disabled, entitled to free VA care, but only make use of the prescription benefits because it’s almost impossible to get immediate health care if something comes up that needs to be addressed right now. Otherwise, I’m on Medicare and pay for a supplement,

Why do you still have a supplement?  Aren’t you covered by Tricare for life? If so, it becomes the supplement to Medicare and even pays the deductible. Any place that takes Medicare also accepts Tricare.  We dropped our supplements when TFL went into effect on 10/01/01.  Save a couple of thousand bucks a year. LZ – Hide quoted text — Show quoted text – Canoli

Response:

– Hide quoted text — Show quoted text – Otherwise, I’m on Medicare and pay for a supplement, Why do you still have a supplement?  Aren’t you covered by Tricare for life? If so, it becomes the supplement to Medicare and even pays the deductible. Any place that takes Medicare also accepts Tricare.  We dropped our supplements when TFL went into effect on 10/01/01.  Save a couple of thousand bucks a year. LZ As far as I know, I’m not eligible for Tricare because I was discharged, rather than retired,  but I’ll certainly look into it: thanks for the tip. Canoli

Check with Dave Thompson when you catch his next post.  I believe he is in the same boat. LZ

Response:

This is good info, John  – I am going to try it. It probably has a better chance away from DC. I know when I lived in TX, things seemed to get done that would never have succeeded in the bureaucracy up here. Thanks also to those who responded. Tom – Hide quoted text — Show quoted text – IIRC, it’s "only" 50% (like yours truly — also an RVN vet — presently) or higher to be in CAT I (as I am). But you know, I have a friend (now 64) who only did 4 years (peacetime duty in Germany, 1960-64), does not have any service-connected disability, went down to the VA (El Paso, TX) with his DD-214, got registered/entered into the system, sees a VA Primary Care doctor (in Primary Care Team C) free every 3 months or so for whatever (diabetes, acid-reflux issues, back problems, nicotine patches for quitting smoking, etc.) gets any prescriptions ALMOST free ($7 co-payment each prescription…but his income is so low (he’s on SS) he won’t pay ANYTHING now), even gets lab, x-rays and other tests at no charge. So due to this being a somewhat complicated matter but definitely beneficial to the recipient, it’s certainly worth a try to find out for sure: I suggest that Tom go ot his nearest VA clinic/hospital facility, take his DD-214 with him, get "registered" into the system and find out what the VA can/can not do for him…nothing to lose but some time and effort. John D. Hi All, I live in Virginia and, at 64, am covered by an individual Anthem BC/BS health care policy. We are planning to go full-time in a few months, and were planning to use the Escapee’s TX domicile feature, until we realized that the Anthem policy will be cancelled upon taking a TX domicile. I got the Anthem via COBRA/HIPAA, after being laid off. Anyone know if TX BC/BS is likely to take me? How do state-specific health plans feel about us full-timing, with lots of time spent outside of their area? Also, I am a 4-year Viet Nam-era veteran; has anybody tried the VA health system? Thanks in advance, Tom Unless you are a Category 1 veteran (Service Connected Disabled at 60% or higher) forget the VA.  Routine appointments run 6-9 months in the future. You will be 65 soon and will be covered by Medicare.  Get a good supplement and hit the road.

Response:

– Hide quoted text — Show quoted text – Otherwise, I’m on Medicare and pay for a supplement, Why do you still have a supplement?  Aren’t you covered by Tricare for life? If so, it becomes the supplement to Medicare and even pays the deductible. Any place that takes Medicare also accepts Tricare.  We dropped our supplements when TFL went into effect on 10/01/01.  Save a couple of thousand bucks a year. LZ As far as I know, I’m not eligible for Tricare because I was discharged, rather than retired,  but I’ll certainly look into it: thanks for the tip. Canoli Check with Dave Thompson when you catch his next post.  I believe he is in the same boat. LZ

I’m eligible for TFL.  I am retired. I’m just not old enough yet! (G)  I do have Tricare Prime and wouldn’t trade it for anything.  I had open heart surgery last April and the total bill was $165,000 for hospital, surgeon and sundry labs and such.  My out of pocket cost was $8.50 for hospital telephone which Tricare wouldn’t cover.  Additionally, my wife had breast cancer and the out of pocket costs have been $12 co-pay for chemotherapy visits. — Dave Thompson

Response:

– Hide quoted text — Show quoted text – Hi All, I live in Virginia and, at 64, am covered by an individual Anthem BC/BS health care policy. We are planning to go full-time in a few months, and were planning to use the Escapee’s TX domicile feature, until we realized that the Anthem policy will be cancelled upon taking a TX domicile. I got the Anthem via COBRA/HIPAA, after being laid off. Anyone know if TX BC/BS is likely to take me? How do state-specific health plans feel about us full-timing, with lots of time spent outside of their area? Also, I am a 4-year Viet Nam-era veteran; has anybody tried the VA health system? Thanks in advance, Tom

Unless you are a Category 1 veteran (Service Connected Disabled at 60% or higher) forget the VA.  Routine appointments run 6-9 months in the future. You will be 65 soon and will be covered by Medicare.  Get a good supplement and hit the road. — Dave Thompson

Response:

IIRC, it’s "only" 50% (like yours truly — also an RVN vet — presently) or higher to be in CAT I (as I am). But you know, I have a friend (now 64) who only did 4 years (peacetime duty in Germany, 1960-64), does not have any service-connected disability, went down to the VA (El Paso, TX) with his DD-214, got registered/entered into the system, sees a VA Primary Care doctor (in Primary Care Team C) free every 3 months or so for whatever (diabetes, acid-reflux issues, back problems, nicotine patches for quitting smoking, etc.) gets any prescriptions ALMOST free ($7 co-payment each prescription…but his income is so low (he’s on SS) he won’t pay ANYTHING now), even gets lab, x-rays and other tests at no charge. So due to this being a somewhat complicated matter but definitely beneficial to the recipient, it’s certainly worth a try to find out for sure: I suggest that Tom go ot his nearest VA clinic/hospital facility, take his DD-214 with him, get "registered" into the system and find out what the VA can/can not do for him…nothing to lose but some time and effort. John D. – Hide quoted text — Show quoted text – Hi All, I live in Virginia and, at 64, am covered by an individual Anthem BC/BS health care policy. We are planning to go full-time in a few months, and were planning to use the Escapee’s TX domicile feature, until we realized that the Anthem policy will be cancelled upon taking a TX domicile. I got the Anthem via COBRA/HIPAA, after being laid off. Anyone know if TX BC/BS is likely to take me? How do state-specific health plans feel about us full-timing, with lots of time spent outside of their area? Also, I am a 4-year Viet Nam-era veteran; has anybody tried the VA health system? Thanks in advance, Tom Unless you are a Category 1 veteran (Service Connected Disabled at 60% or higher) forget the VA.  Routine appointments run 6-9 months in the future. You will be 65 soon and will be covered by Medicare.  Get a good supplement and hit the road.

Response:

Hi All, I live in Virginia and, at 64, am covered by an individual Anthem BC/BS health care policy. We are planning to go full-time in a few months, and were planning to use the Escapee’s TX domicile feature, until we realized that the Anthem policy will be cancelled upon taking a TX domicile. I got the Anthem via COBRA/HIPAA, after being laid off. Anyone know if TX BC/BS is likely to take me? How do state-specific health plans feel about us full-timing, with lots of time spent outside of their area? Also, I am a 4-year Viet Nam-era veteran; has anybody tried the VA health system? Thanks in advance, Tom

Response:

Ommaya Reservoir

Question:

Boukie wrote; << My mom has had an Ommaya Reservoir implanted to treat breast cancer that has spread to her spinal column and brain fluid. Has anyone here had any experience with getting chemotherapy in this manner?   Hi, I am not familiar with this.   Where is she being treated?

Response:

Hi, I am not familiar with this.   Where is she being treated?

University of Chicago Hospitals.

Response:

My mom has had an Ommaya Reservoir implanted to treat breast cancer that has spread to her spinal column and brain fluid. Has anyone here had any experience with getting chemotherapy in this manner? She had been getting chemo through spinal taps prior to getting the implant. Treatments should be far less painful now.

I don’t know anyone who’s got experience with an Ommaya resevoir but there’s a fair bit of information on the Internet about the procedure. I guess they remove enough spinal fluid to match the volume of drugs being administered – if they’re administering 5cc of medication they remove 5cc of CSF from the resevoir beforehand. A web search should bring you what you’re looking for – I found a buncha stuff about the procedure and what side effects were common.

Response:

My mom has had an Ommaya Reservoir implanted to treat breast cancer that has spread to her spinal column and brain fluid. Has anyone here had any experience with getting chemotherapy in this manner? She had been getting chemo through spinal taps prior to getting the implant. Treatments should be far less painful now.

Response:

Western Caribbeans in August/September, How's the weather?

Question:

Hi, I’m planning to take my parents on a 7nights trip to the Western Caribbeans on Carnival Paradise leaving Miami. My mother will finish her chemotherapy for breast cancer in July, so we’ve been anticipating a trip to forget about what happened the past year. The last week of August and the first 2 weeks of September is the only possible time for me to leave. Can anyone please input on the weather condition and possible watch-outs if we do go on this trip? Provided we somehow can dodge the hurricanes, how’s the temprature and humidity in southern florida by that time? Am I crazy to choose this time of the year, or this area? Are there any alternative cruises for similar fun around that period of time? you choose not to post on this group.

Response:

The good thing about South Florida and the Caribbean is that the weather is almost always good!  Your temps for that time of year should be in the mid-80s for highs and mid to upper 70s for lows.  As you head further south through the Caribbean, they may increase a bit.  The humidity is usually pretty high no matter when you go.  So as long as you understand the hurricane risk at that time of year, everything should be okay! —–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–==  Over 80,000 Newsgroups – 16 Different Servers! =—–

Response:

Western Caribbeans in August/September, How's the weather? Am I crazy?

Question:

Hi, I’m planning to take my parents on a 7nights trip to the Western Caribbeans on Carnival Paradise leaving Miami. My mother will finish her chemotherapy for breast cancer in July, so we’ve been anticipating a trip to forget about what happened the past year. The last week of August and the first 2 weeks of September is the only possible time for me to leave. Can anyone please input on the weather condition and possible watch-outs if we do go on this trip? Provided we somehow can dodge the hurricanes, how’s the temprature and humidity in southern florida by that time? Am I crazy to choose this time of the year, or this area? Are there any alternative cruises for similar fun around that period of time? you choose not to post on this group.

Response:

Hi, I’m planning to take my parents on a 7nights trip to the Western Caribbeans on Carnival Paradise leaving Miami. The last week of August and the first 2 weeks of September is the only possible time for me to leave. Can anyone please input on the weather condition and possible watch-outs if we do go on this trip?

All those weeks you are rolling the dice as it is hurricane season … but the western Carib is less likely to have one ( tell that to the many stranded last year out of New Orleans) … We went last Sept. NYC to Bermuda and ran around one gave us like 12 foot seas … with only minor inconveniences for many and a special treat for me … Provided we somehow can dodge the hurricanes, how’s the temprature and humidity in southern florida by that time?

It is always hot and humid … but the ocean breezes moderate it somewhat … look at historic Key West temps … the average high is like 89 degrees +/- 3 … Am I crazy to choose this time of the year, or this area?

No … in fact you could get a pretty good deal in Sept. … Are there any alternative cruises for similar fun around that period of time?

Sure … everywhere … Be seeing you In the Village Number 6

Response:

We always take a cruise in Sept – After the kids are back in school.  It’s a great time of the year & the cruise ships do the best to miss the storms. – Hide quoted text — Show quoted text – Hi, I’m planning to take my parents on a 7nights trip to the Western Caribbeans on Carnival Paradise leaving Miami. My mother will finish her chemotherapy for breast cancer in July, so we’ve been anticipating a trip to forget about what happened the past year. The last week of August and the first 2 weeks of September is the only possible time for me to leave. Can anyone please input on the weather condition and possible watch-outs if we do go on this trip? Provided we somehow can dodge the hurricanes, how’s the temprature and humidity in southern florida by that time? Am I crazy to choose this time of the year, or this area? Are there any alternative cruises for similar fun around that period of time? you choose not to post on this group.

Response:

Hi, I’m planning to take my parents on a 7nights trip to the Western Caribbeans on Carnival Paradise leaving Miami. My mother will finish her chemotherapy for breast cancer in July, so we’ve been anticipating a trip to forget about what happened the past year.

No suggestions, but all right, Mom! Hope she stays healthy! – Alabama Worley

Response:

Thanks a lot for the encouraging words! For me, I’d really like to see the power of a hurricane, I was just slightly concerned about my old folks:) Don’t want them to suffer instead. – Hide quoted text — Show quoted text – Hi, I’m planning to take my parents on a 7nights trip to the Western Caribbeans on Carnival Paradise leaving Miami. My mother will finish her chemotherapy for breast cancer in July, so we’ve been anticipating a trip to forget about what happened the past year. No suggestions, but all right, Mom! Hope she stays healthy! – Alabama Worley

Response:

We sailed the Western Caribbean at the end of Sept last year and although we didn’t "run into" any hurricanes, our itinerary was disrupted because of one. We ended up missing Grand Cayman and going instead to Costa Maya. If you sail at this time of year, be prepared to miss Grand Cayman. It is a tendering port and as a result, if the seas are too choppy for tendering, they will skip the port. Otherwise, it’s a great time of year to cruise with great prices.

Response:

Thanks a lot for the encouraging words!

Good for Mom!! (more encouraging words) For me, I’d really like to see the power of a hurricane,

No you don’t. ttfn, jan

Response:

Thanks a lot for the encouraging words! For me, I’d really like to see the power of a hurricane, I was just slightly concerned about my old folks:) Don’t want them to suffer instead.

 Old folks?! humph…..we are in our  well   extremely mid fifties….and we were on the Jubilee last Sept. when hurricane Isidore chased us all around the gulf. Didn’t get to but one stop and that wasn’t even scheduled for us, and we were only there for a couple of hours, but you talk about an experience!!  Waves crashing, the pool emptying itself, everyone at the Pursers desk; Ricky and I had a great time, but then, we didn’t get sick or get hurt at all. We are going to do it again this year, ’cause the chances are, we won’t run into bad weather again. And if we do, so what? I’m not cookin’ cleanin’ or worrying about anything….and tell your mom, congratulations from another survivor of the same disease. We also celebrated with a cruise, our first one. Now I plan one at the drop of a hat!  Good Luck, and remember us old folks like adventure too.. Peaches in Tx.

Response:

50s is not "old"!! My parents are in their mid-late 60s, older than me for sure, but also more active than this lazy boy;-) Thanks for your input! I’ll sure have a great time! – Hide quoted text — Show quoted text – Thanks a lot for the encouraging words! For me, I’d really like to see the power of a hurricane, I was just slightly concerned about my old folks:) Don’t want them to suffer instead.  Old folks?! humph…..we are in our  well   extremely mid fifties….and we were on the Jubilee last Sept. when hurricane Isidore chased us all around the gulf. Didn’t get to but one stop and that wasn’t even scheduled for us, and we were only there for a couple of hours, but you talk about an experience!!  Waves crashing, the pool emptying itself, everyone at the Pursers desk; Ricky and I had a great time, but then, we didn’t get sick or get hurt at all. We are going to do it again this year, ’cause the chances are, we won’t run into bad weather again. And if we do, so what? I’m not cookin’ cleanin’ or worrying about anything….and tell your mom, congratulations from another survivor of the same disease. We also celebrated with a cruise, our first one. Now I plan one at the drop of a hat!  Good Luck, and remember us old folks like adventure too.. Peaches in Tx.

Response:

Go!  We have hit bad weather ,inc. hurricanes in March,April, two in May,one in july ,one in Sept, two in October! The only cruise it ruined was Bermuda (twice)  your stuck ,no other islands to go to! BILL

Response:

Hi, I’m planning to take my parents on a 7nights trip to the Western Caribbeans on Carnival Paradise leaving Miami. My mother will finish her chemotherapy for breast cancer in July, so we’ve been anticipating a trip to forget about what happened the past year. The last week of August and the first 2 weeks of September is the only possible time for me to leave. Can anyone please input on the weather condition and possible watch-outs if we do go on this trip? Provided we somehow can dodge the hurricanes, how’s the temprature and humidity in southern florida by that time? Am I crazy to choose this time of the year, or this area? Are there any alternative cruises for similar fun around that period of time? you choose not to post on this group.

Response:

Hi, I’m planning to take my parents on a 7nights trip to the Western Caribbeans on Carnival Paradise leaving Miami. The last week of August and the first 2 weeks of September is the only possible time for me to leave. Can anyone please input on the weather condition and possible watch-outs if we do go on this trip?

All those weeks you are rolling the dice as it is hurricane season … but the western Carib is less likely to have one ( tell that to the many stranded last year out of New Orleans) … We went last Sept. NYC to Bermuda and ran around one gave us like 12 foot seas … with only minor inconveniences for many and a special treat for me … Provided we somehow can dodge the hurricanes, how’s the temprature and humidity in southern florida by that time?

It is always hot and humid … but the ocean breezes moderate it somewhat … look at historic Key West temps … the average high is like 89 degrees +/- 3 … Am I crazy to choose this time of the year, or this area?

No … in fact you could get a pretty good deal in Sept. … Are there any alternative cruises for similar fun around that period of time?

Sure … everywhere … Be seeing you In the Village Number 6

Response:

We always take a cruise in Sept – After the kids are back in school.  It’s a great time of the year & the cruise ships do the best to miss the storms. – Hide quoted text — Show quoted text – Hi, I’m planning to take my parents on a 7nights trip to the Western Caribbeans on Carnival Paradise leaving Miami. My mother will finish her chemotherapy for breast cancer in July, so we’ve been anticipating a trip to forget about what happened the past year. The last week of August and the first 2 weeks of September is the only possible time for me to leave. Can anyone please input on the weather condition and possible watch-outs if we do go on this trip? Provided we somehow can dodge the hurricanes, how’s the temprature and humidity in southern florida by that time? Am I crazy to choose this time of the year, or this area? Are there any alternative cruises for similar fun around that period of time? you choose not to post on this group.

Response:

Hi, I’m planning to take my parents on a 7nights trip to the Western Caribbeans on Carnival Paradise leaving Miami. My mother will finish her chemotherapy for breast cancer in July, so we’ve been anticipating a trip to forget about what happened the past year.

No suggestions, but all right, Mom! Hope she stays healthy! – Alabama Worley

Response:

Thanks a lot for the encouraging words! For me, I’d really like to see the power of a hurricane, I was just slightly concerned about my old folks:) Don’t want them to suffer instead. – Hide quoted text — Show quoted text – Hi, I’m planning to take my parents on a 7nights trip to the Western Caribbeans on Carnival Paradise leaving Miami. My mother will finish her chemotherapy for breast cancer in July, so we’ve been anticipating a trip to forget about what happened the past year. No suggestions, but all right, Mom! Hope she stays healthy! – Alabama Worley

Response:

We sailed the Western Caribbean at the end of Sept last year and although we didn’t "run into" any hurricanes, our itinerary was disrupted because of one. We ended up missing Grand Cayman and going instead to Costa Maya. If you sail at this time of year, be prepared to miss Grand Cayman. It is a tendering port and as a result, if the seas are too choppy for tendering, they will skip the port. Otherwise, it’s a great time of year to cruise with great prices.

Response:

Thanks a lot for the encouraging words!

Good for Mom!! (more encouraging words) For me, I’d really like to see the power of a hurricane,

No you don’t. ttfn, jan

Response:

Thanks a lot for the encouraging words! For me, I’d really like to see the power of a hurricane, I was just slightly concerned about my old folks:) Don’t want them to suffer instead.

 Old folks?! humph…..we are in our  well   extremely mid fifties….and we were on the Jubilee last Sept. when hurricane Isidore chased us all around the gulf. Didn’t get to but one stop and that wasn’t even scheduled for us, and we were only there for a couple of hours, but you talk about an experience!!  Waves crashing, the pool emptying itself, everyone at the Pursers desk; Ricky and I had a great time, but then, we didn’t get sick or get hurt at all. We are going to do it again this year, ’cause the chances are, we won’t run into bad weather again. And if we do, so what? I’m not cookin’ cleanin’ or worrying about anything….and tell your mom, congratulations from another survivor of the same disease. We also celebrated with a cruise, our first one. Now I plan one at the drop of a hat!  Good Luck, and remember us old folks like adventure too.. Peaches in Tx.

Response:

50s is not "old"!! My parents are in their mid-late 60s, older than me for sure, but also more active than this lazy boy;-) Thanks for your input! I’ll sure have a great time! – Hide quoted text — Show quoted text – Thanks a lot for the encouraging words! For me, I’d really like to see the power of a hurricane, I was just slightly concerned about my old folks:) Don’t want them to suffer instead.  Old folks?! humph…..we are in our  well   extremely mid fifties….and we were on the Jubilee last Sept. when hurricane Isidore chased us all around the gulf. Didn’t get to but one stop and that wasn’t even scheduled for us, and we were only there for a couple of hours, but you talk about an experience!!  Waves crashing, the pool emptying itself, everyone at the Pursers desk; Ricky and I had a great time, but then, we didn’t get sick or get hurt at all. We are going to do it again this year, ’cause the chances are, we won’t run into bad weather again. And if we do, so what? I’m not cookin’ cleanin’ or worrying about anything….and tell your mom, congratulations from another survivor of the same disease. We also celebrated with a cruise, our first one. Now I plan one at the drop of a hat!  Good Luck, and remember us old folks like adventure too.. Peaches in Tx.

Response:

Go!  We have hit bad weather ,inc. hurricanes in March,April, two in May,one in july ,one in Sept, two in October! The only cruise it ruined was Bermuda (twice)  your stuck ,no other islands to go to! BILL

Response:

Mouth ulcers from chemo

Question:

My brother has Mantle Cell Lymphoma, Stage 4, and is undergoing chemotherapy.  So far he has had 4 chemo treatments and he now has mouth sores inside his mouth and on his tongue so bad that he can’t eat.  Can anyone that has dealt with this possibly offer some suggestions to help?  Is there anything he can do to reduce these sores or at least the pain form them?  He has gotten too weak to search for help himself and is in so much pain all over.  I just want to help any small way that I can and these mouth sores seem to especially be a problem for him. Thank you so much for any suggestions, Bonnie —

Response:

My brother has Mantle Cell Lymphoma, Stage 4, and is undergoing chemotherapy.  So far he has had 4 chemo treatments and he now has mouth sores inside his mouth and on his tongue so bad that he can’t eat.  Can anyone that has dealt with this possibly offer some suggestions to help? Is there anything he can do to reduce these sores or at least the pain form them?  He has gotten too weak to search for help himself and is in so much pain all over.  I just want to help any small way that I can and these mouth sores seem to especially be a problem for him. Thank you so much for any suggestions, Bonnie

The ulcers can be a direct effect of the chemo on the mucous membrane, a sign of a low white count, or a local infection like candida. He really needs to show his oncologist

Response:

I’m a RN who works on an oncology unit.  We have a solution that we give our patients called Magic Mouthwash…I am not sure of the exact ingredients and ratios but can get that information for you if you’d like.  Also, try pineapple.  Slice it, and freeze it and let your brother suck on the frozen pieces.  I’m not sure how/why it works but I’ve been told that it does.

– Hide quoted text — Show quoted text – My brother has Mantle Cell Lymphoma, Stage 4, and is undergoing chemotherapy.  So far he has had 4 chemo treatments and he now has mouth sores inside his mouth and on his tongue so bad that he can’t eat.  Can anyone that has dealt with this possibly offer some suggestions to help? Is there anything he can do to reduce these sores or at least the pain form them?  He has gotten too weak to search for help himself and is in so much pain all over.  I just want to help any small way that I can and these mouth sores seem to especially be a problem for him. Thank you so much for any suggestions, Bonnie —

Response:

Bonnie: I had the same problem back in 2000 when I was undergoing chemo for colon cancer. Get a prescription from the doctor for "Miracle Mouthwash". It has to be mixed up at the pharmacist. You  take some, swish it around your mouth, then swallow it.  ( I think you swallow the rest).  Works real well. Also I used to suck on chipped ice during the chemo injection.  What the ice does, is prevents the chemo from getting into the blood vessels of the mouth. Hope this helps. I’m on chemo for a second round of colon cancer, but so far, thank God, the only side effect is just being tired and some of  what is called "Chemo Brain". Bill G. My brother has Mantle Cell Lymphoma, Stage 4, and is undergoing chemotherapy.  So far he has had 4 chemo treatments and he now has mouth sores inside his mouth and on his tongue so bad that he can’t eat.  Can anyone that has dealt with this possibly offer some suggestions to help?  Is there anything he can do to reduce these sores or at least the pain form them?  He has gotten too weak to search for help himself and is in so much pain all over.  I just want to help any small way that I can and these mouth sores seem to especially be a problem for him. Thank you so much for any suggestions, Bonnie

Remove  NoSpam  from my email address if you reply using email

Response:

My brother has Mantle Cell Lymphoma, Stage 4, and is undergoing chemotherapy.  So far he has had 4 chemo treatments and he now has mouth sores inside his mouth and on his tongue so bad that he can’t eat.  Can anyone that has dealt with this possibly offer some suggestions to help? Is there anything he can do to reduce these sores or at least the pain form them?  He has gotten too weak to search for help himself and is in so much pain all over.  I just want to help any small way that I can and these mouth sores seem to especially be a problem for him. Thank you so much for any suggestions

Hi Bonnie I had sores in the mouth after chemo, the nurse at Oncology gave me chlorhexidine gluconate mouthwash, to be used three times a day, and also bottles and bottles of nystatin suspension which you rinse around your mouth and swallow 4 times a day. These two worked really well for me, try mentioning it to your brother’s oncologist.  Can’t hurt. All the best for his speedy recovery.  Mouth ulcers can really get you down, I know. Eve

Response:

Bonnie Mouth sores are a common (almost inevitable) side effect of chemo. Good oral hygiene is very important which means a mouthwash after every meal to get rid of food debris which could encourage infection. A dose of antacid like mylanta or mucaine swilled around the mouth will soothe and protect the tissues while he eats and for really sore mouth xylocaine gel, a local anaesthetic, will help. Obviously he should be taking only very soft foods until the mouth heals. If he gets an infection (thrush is common, look for white spots in the mouth and throat) nystatin drops taken four times daily will clear it up quite quickly. Steph is right about getting the oncologist to have a look at it. He may need special treatment or changes in his chemo regimen. MIKE

– Hide quoted text — Show quoted text – My brother has Mantle Cell Lymphoma, Stage 4, and is undergoing chemotherapy.  So far he has had 4 chemo treatments and he now has mouth sores inside his mouth and on his tongue so bad that he can’t eat.  Can anyone that has dealt with this possibly offer some suggestions to help? Is there anything he can do to reduce these sores or at least the pain form them?  He has gotten too weak to search for help himself and is in so much pain all over.  I just want to help any small way that I can and these mouth sores seem to especially be a problem for him. Thank you so much for any suggestions, Bonnie —

Response:

- Hide quoted text — Show quoted text – My brother has Mantle Cell Lymphoma, Stage 4, and is undergoing chemotherapy.  So far he has had 4 chemo treatments and he now has mouth sores inside his mouth and on his tongue so bad that he can’t eat.  Can anyone that has dealt with this possibly offer some suggestions to help?  Is there anything he can do to reduce these sores or at least the pain form them?  He has gotten too weak to search for help himself and is in so much pain all over.  I just want to help any small way that I can and these  mouth sores seem to especially be a problem for him. Thank you so much for any suggestions Hi Bonnie I had sores in the mouth after chemo, the nurse at Oncology gave me chlorhexidine gluconate mouthwash, to be used three times a day, and also bottles and bottles of nystatin suspension which you rinse around your mouth and swallow 4 times a day. These two worked really well for me, try mentioning it to your brother’s oncologist.  Can’t hurt. All the best for his speedy recovery.  Mouth ulcers can really get you down, I know. Eve

I’m on my second time around with chemo for breast cancer and both times I’ve have mouth problems. I also use chlorhexidine gluconate mouthwash and nytstatin but also use sucralfate suspension. The dose is larger than the nytstatin which means there is more to rinse around and it coats your mouth for a while which helps. Foodwise I tend to stick to dairy based foods which seem to irritate the least: yoghurt, soft cheeses, chocolate mousse, they often don’t taste like they should but I found just the cooling effect they had on my mouth was worth it. I hope things improve soon. Best wishes. Jules

Response:

Thank you all so very much for your suggestions and your kind words.  My brother sees his oncologist this week and he will discuss it with him then. I will also tell him about all these excellent suggestions.  He is also due to have another bone marrow test and then another round of chemo although he is quite uncomfortable with the thought of this since he has been feeling as badly as he has recently. My brother does not live in the same state as me so most of my contact with him is by phone.  He has been hesitant to call his doctor with problems because he thinks these are inevitable.  While that may be true, I believe there has to be methods of helping to at least fight the symptoms in many of these cases and your responses help me to see there are things that can be done.  I am also concerned because he is now living with his married son’s family and they have a young child that goes to daycare.  It is great for him to be with his son’s family but I know a child in daycare brings home many bugs that my brother continually catches now since his defenses are so low.  I’ve tried to suggest that he might wear a mask around his grandson but he does not want to do that.  When living in this situation is there anything in particular that can be done to prevent catching so much from a young child? Thank you all again so much for your help and I wish you all the best. Bonnie —

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Thank you all so very much for your suggestions and your kind words.  My brother sees his oncologist this week and he will discuss it with him then. I will also tell him about all these excellent suggestions.  He is also due to have another bone marrow test and then another round of chemo although he is quite uncomfortable with the thought of this since he has been feeling as badly as he has recently. My brother does not live in the same state as me so most of my contact with him is by phone.  He has been hesitant to call his doctor with problems because he thinks these are inevitable.

<SNIP Bonnie, When talking with oncologist and chemo nurses, the most common ‘patient related’ complaint I hear from them is that their patients won’t call them when they are having problems. The patient will come in for a regular, once-per-week treatment and when asked how things are going will, after some prompting, admit that they’ve been fighting pain, or diarrhea, or some other problem all week long. (in many cases, the patient him or her self won’t say anything about the diarrhea, or pain – it’s the SPOUSE of the patient that spills the beans!!) The reason this upsets the health care people is that most of these problems can be handled pretty easily if they are caught early – especially pain, nausea and bowel problems. If left to ‘run their course’ for a week or so, the problem becomes much, much harder to manage or control. In my own oncology office (and I suspect, most others), no one gets ‘bothered’ or ‘annoyed’ when a patient calls in for help with a problem – even if this problem seems ‘trivial’ or an ‘expected result’ of the treatment. They get much more ‘bothered’ and ‘annoyed’ when they are forced to deal with a huge problem that could have been handled simply if only it was reported earlier. I’d advise that brother of yours to call the doc when he’s suffering symptoms of any kind. It can’t make things any worse now, can it? That’s my two cents worth, anyway. Wishing you and your brother all the luck in the world- Lowkey the lowly Labrat.

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- Hide quoted text — Show quoted text – Bonnie, When talking with oncologist and chemo nurses, the most common ‘patient related’ complaint I hear from them is that their patients won’t call them when they are having problems. The patient will come in for a regular, once-per-week treatment and when asked how things are going will, after some prompting, admit that they’ve been fighting pain, or diarrhea, or some other problem all week long. (in many cases, the patient him or her self won’t say anything about the diarrhea, or pain – it’s the SPOUSE of the patient that spills the beans!!) The reason this upsets the health care people is that most of these problems can be handled pretty easily if they are caught early – especially pain, nausea and bowel problems. If left to ‘run their course’ for a week or so, the problem becomes much, much harder to manage or control. In my own oncology office (and I suspect, most others), no one gets ‘bothered’ or ‘annoyed’ when a patient calls in for help with a problem – even if this problem seems ‘trivial’ or an ‘expected result’ of the treatment. They get much more ‘bothered’ and ‘annoyed’ when they are forced to deal with a huge problem that could have been handled simply if only it was reported earlier. I’d advise that brother of yours to call the doc when he’s suffering symptoms of any kind. It can’t make things any worse now, can it? That’s my two cents worth, anyway. Wishing you and your brother all the luck in the world- Lowkey the lowly Labrat.

Thank you so much for this helpful post.  You very aptly put much of what I was thinking.  I think I will print out your response, along with these others, and give it to my brother.  He is the type of person that he doesn’t want to "be a bother to others" but I do think this is a very different situation and he needs to speak up much sooner. Thanks again, Bonnie —

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– Hide quoted text — Show quoted text – Thank you all so very much for your suggestions and your kind words.  My brother sees his oncologist this week and he will discuss it with him then. I will also tell him about all these excellent suggestions.  He is also due to have another bone marrow test and then another round of chemo although he is quite uncomfortable with the thought of this since he has been feeling as badly as he has recently. My brother does not live in the same state as me so most of my contact with him is by phone.  He has been hesitant to call his doctor with problems because he thinks these are inevitable. <SNIP Bonnie, When talking with oncologist and chemo nurses, the most common ‘patient related’ complaint I hear from them is that their patients won’t call them when they are having problems. The patient will come in for a regular, once-per-week treatment and when asked how things are going will, after some prompting, admit that they’ve been fighting pain, or diarrhea, or some other problem all week long. (in many cases, the patient him or her self won’t say anything about the diarrhea, or pain – it’s the SPOUSE of the patient that spills the beans!!) The reason this upsets the health care people is that most of these problems can be handled pretty easily if they are caught early – especially pain, nausea and bowel problems. If left to ‘run their course’ for a week or so, the problem becomes much, much harder to manage or control. In my own oncology office (and I suspect, most others), no one gets ‘bothered’ or ‘annoyed’ when a patient calls in for help with a problem – even if this problem seems ‘trivial’ or an ‘expected result’ of the treatment. They get much more ‘bothered’ and ‘annoyed’ when they are forced to deal with a huge problem that could have been handled simply if only it was reported earlier.

Absolutely, Loki

Response:

– Hide quoted text — Show quoted text – Bonnie, When talking with oncologist and chemo nurses, the most common ‘patient related’ complaint I hear from them is that their patients won’t call them when they are having problems. The patient will come in for a regular, once-per-week treatment and when asked how things are going will, after some prompting, admit that they’ve been fighting pain, or diarrhea, or some other problem all week long. (in many cases, the patient him or her self won’t say anything about the diarrhea, or pain – it’s the SPOUSE of the patient that spills the beans!!) The reason this upsets the health care people is that most of these problems can be handled pretty easily if they are caught early – especially pain, nausea and bowel problems. If left to ‘run their course’ for a week or so, the problem becomes much, much harder to manage or control. In my own oncology office (and I suspect, most others), no one gets ‘bothered’ or ‘annoyed’ when a patient calls in for help with a problem – even if this problem seems ‘trivial’ or an ‘expected result’ of the treatment. They get much more ‘bothered’ and ‘annoyed’ when they are forced to deal with a huge problem that could have been handled simply if only it was reported earlier. I’d advise that brother of yours to call the doc when he’s suffering symptoms of any kind. It can’t make things any worse now, can it? That’s my two cents worth, anyway. Wishing you and your brother all the luck in the world- Lowkey the lowly Labrat.

Hi Lowkey What you have said is so true.  After my first chemo I didn’t have a bowel movement for six days.  I felt so ill, but kept thinking that all would be well "the next day".  However, on the sixth day I was visiting my husband, who was in hospital after a minor op and I fainted in the Day Room.  The next thing I was in the Acute Cancer Ward having enemas and drips and x-rays etc, and was terribly ill.  I was in for three days until all was cleared up, and was told that I should have reported no bowel movement after the SECOND day, and they would have told me what to do. So I can fully relate to what you say, and never again tried to go it alone when strange symptoms appeared, I either rang Oncology or my Macmillan nurse, and go through the rest of my chemo without having to go back into hospital again. Very good advice. Eve

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Chemo's Combined? Or not?

Question:

Do they give AC with either Taxol or Taxotere at the same time? I had CMF and that was given all at one time..each session. I’ve learned from all of you here {+reading other boards} that AC is 4 treatments spread out over 3 months time…{?} Three week intervals separate the sessions? If they do _not_ combine them? Then how long between the AC, and one of the others they would chooose? {approx}

….(parts deleted) Thanks in advance everyone… Take care and God bless annie Ultimately…..we know deeply that the other side of every fear is a freedom. "Courage"…is *fear* that has said it’s prayers.

There is a current clinical trial testing the effectiveness and quality of life with three arms.  See the reference at http://www.nsabp.pitt.edu/B30_Information.htm 1.  Standard treatment (AC together every three weeks for 4 sessions) then taxotere every three weeks for four sessions. 2.  All three drugs together every three weeks for 4 sessions. 3.  AT together every three weeks for 4 sessions. You enroll and then there is a random draw to see which arm you get.  We drew the standard treatment. -bob-

Response:

Do they give AC with either Taxol or Taxotere at the same time? I had CMF and that was given all at one time..each session. I’ve learned from all of you here {+reading other boards} that AC is 4 treatments spread out over 3 months time…{?} Three week intervals separate the sessions? If they do _not_ combine them? Then how long between the AC, and one of the others they would chooose? {approx}

In my case and in most of the people that have discussed here: A/C is normally given once every three weeks, four treatments.  Then four treatments of Taxotere, again once every three weeks. One of the arms of the clinical trial I was/am in was giving all three at the same time.  I always thought that might have been interesting to try. 12 weeks of pure hell instead of 24 weeks of mild hell. (OK, "hell" is the wrong word to use, but you get the gist!) And if you need someone to commiserate with, Friday the 13th, I have a pap and a mammogram scheduled!  Fun, fun, fun! Peg

Response:

 Do they give AC with either Taxol or Taxotere at the same time? I had CMF and that was given all at one time..each session.

I think that I had Adriamycin and Taxotere at the same time for a couple of sessions, but I could be wrong. — Aloha, Catharine Character is what you do when no one’s watching.

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Not sure about the US, but I’m on the A/C only.  Will ask the oncologist tomorrow when I see him if I get anything else after. hugs jackie

– Hide quoted text — Show quoted text – Do they give AC with either Taxol or Taxotere at the same time? I had CMF and that was given all at one time..each session. I’ve learned from all of you here {+reading other boards} that AC is 4 treatments spread out over 3 months time…{?} Three week intervals separate the sessions? If they do _not_ combine them? Then how long between the AC, and one of the others they would chooose? {approx} I guess the reason I’m asking….is it sure seems like it would be easier to have it all out of the way at one time….as opposed to dragging it out like the CMF I had last time…that took 6 months to finish. To the ones that are thinking that this is abit "premature" on my part, with not knowing what they’ll choose for me? {oncologists appt on 12/13..Yep! Friday the 13th…great huh? do I need anymore things in my path?} I just would _much_ prefer to know about some of this now…So there’s time to digest the information, and get used to the fact that this more then likely will be suggested..and I’d like to be somewhat prepared for all of this…. Thanks in advance everyone… Take care and God bless annie Ultimately…..we know deeply that the other side of every fear is a freedom. "Courage"…is *fear* that has said it’s prayers.

Response:

Do they give AC with either Taxol or Taxotere at the same time? I had CMF and that was given all at one time..each session. I’ve learned from all of you here {+reading other boards} that AC is 4 treatments spread out over 3 months time…{?} Three week intervals separate the sessions? If they do _not_ combine them? Then how long between the AC, and one of the others they would chooose? {approx} I guess the reason I’m asking….is it sure seems like it would be easier to have it all out of the way at one time….as opposed to dragging it out like the CMF I had last time…that took 6 months to finish. To the ones that are thinking that this is abit "premature" on my part, with not knowing what they’ll choose for me? {oncologists appt on 12/13..Yep! Friday the 13th…great huh? do I need anymore things in my path?} I just would _much_ prefer to know about some of this now…So there’s time to digest the information, and get used to the fact that this more then likely will be suggested..and I’d like to be somewhat prepared for all of this…. Thanks in advance everyone… Take care and God bless annie Ultimately…..we know deeply that the other side of every fear is a freedom. "Courage"…is *fear* that has said it’s prayers.

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Annie. I know that they now give A and T together but am not sure if they include C with it.  I thought I had read others posts which indicated that they did but am not sure they were just including the entire regimen and not how/what order it was given.   There are also other drug regimens being given today as well–i.e. Carboplatin as well as Navelbine.  Although the last 2 are usually used for more advanced stages, they are now being given at earlier stages in clinical trials.

Response:

Do they give AC with either Taxol or Taxotere at the same time? I had CMF and that was given all at one time..each session.

annie – Deborah had AC + Taxotere as part of a clinical trial.  Most of the time they don’t give them all to you in one whack as it’s pretty heavyweight chemotherapy.  She had to have Neupogen support for pretty close to ten days every cycle. I don’t think there’s any clinical advantage to giving them all to you at the same time – WBC production gets pretty well compromised and sometimes red blood cell too – Deborah had to have an injection of Procrit three or four times during the trial.  If Taxotere is going to be effective it’ll be effective after the AC – and remember, breast cancer isn’t a medical emergency  :) She never vomited but did complain of a bit of nausea on days 2-4. Fatigue was a problem.  We had to make arrangements for her to have a place to sit down any time we knew she was going to be standing for more than 20 minutes or so.  Grocery shopping usually required a break in the coffee shop at the store about the middle of the shopping trip. If I can help more, just holler.  I don’t read every message in the ng any more but I am in here just about every day.  If you start a thread titled "Hey, allan!" or something I’ll get the message – Mary has experience with that one  :) allan — allan humans can reach me at wizard at pointbeing dot com

Response:

I had AC and Taxol.  First, 4 AC, given every 3 weeks, as you noted.  Then, with no break…started Taxol 3 weeks after the last AC, every three weeks for 4 treatments.

| Do they give AC with either Taxol or Taxotere at the same time? I had | CMF and that was given all at one time..each session. | | I’ve learned from all of you here {+reading other boards} that AC is 4 | treatments spread out over 3 months time…{?} | Three week intervals separate the sessions? | | If they do _not_ combine them? Then how long between the AC, and one of | the others they would chooose? {approx} | | I guess the reason I’m asking….is it sure seems like it would be | easier to have it all out of the way at one time….as opposed to | dragging it out like the CMF I had last time…that took 6 months to | finish. | | To the ones that are thinking that this is abit "premature" on my part, | with not knowing what they’ll choose for me? {oncologists appt on | 12/13..Yep! Friday the 13th…great huh? do I need anymore things in my | path?} | | I just would _much_ prefer to know about some of this now…So there’s | time to digest the information, and get used to the fact that this more | then likely will be suggested..and I’d like to be somewhat prepared for | all of this…. | | Thanks in advance everyone… | Take care and God bless | annie | | Ultimately…..we know deeply that the other side of every fear is a | freedom. | | "Courage"…is *fear* that has said it’s prayers. |

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