Metastatic Breast Cancer | Cancerous Breast

Category: Metastatic Breast Cancer

Arimidex and joint/shouder pain

Question:

My wife’s had increasingly severe shoulder and knee pain over the last month. She began on Arimidex in September. . . . Does anyone have any ideas/suggestions? At the risk of sounding like a homeopath, what about condroitin-glucosamine?

Has she been checked out for other possible causes, such as hypothyroidism? Have you considered/tried remedies other than medication: Warm baths (epsom salts?), professional massage therapy, chiropractic or osteopathic manipulation, moist heat (there’s a *great* kind of heating pad called a "Thermophore"), stretching/yoga, other exercise? These are not panaceas, but may reduce the discomfort. They have helped me, though my joint problems are not so severe as your wife’s. I haven’t tried condroitin-glucosamine, but have heard & read mostly positive things. Ann T.

Response:

Scott, how long was she on Celebrex and at what dosage? I started to get stiffness and joint pain about 6 mos. after being on Arimidex (I think it was 6 mos–felt like a little old lady whenever I changed positions). That improved with 200 mg./twice/day but have upped it to 400 mg/twice day (max safe dosage which may help with tumor control). That took away joint pain, and I have the movement ability of someone much younger. I am still experiencing shoulder discomfort but both a PET scan and MRI are showing increased uptake in those areas. I am concerned that a metastatic process is taking place. The only sure way to know that, though, is through a bone or bone marrow biopsy. Has your wife had a recent bone scan. She might check into that to verify. I read one article that indicated that 18% of all women with breast cancer got metastases to their shoulder area. One private oncologist I saw, who does 2nd opinions only, negated that based on his past experience and said he had never seen that. However, the article I saw was a teaching article–for radiologists, and I am inclined to think that is more accurate. Scott, I hope I don’t come across as negative in any way, but I think it would be best to further explore–either with MRI and/or PET scan. Both those showed increased uptake. Knowing what I now know about breast cancer (and my extremely high risk for metastases–9 positive nodes, 3 aggressive types of b.c. dx’d at time of dx, and extensive lymphovascular invasion), I think the likelihood that my shoulder pain, based on the scan films themself, are more likely suggestive of metastases going on, than not. Now, if there is just an arthritic process going on, you might have her see her regular dr. or an orthopedist to look into having a shot of cortisone. I was also given physical therapy, which for me did not seem to have much impact. The combination shot of cortisone, increased Celebrex, and an osteoporosis prevention dose of Zometa through IV infusion (all around the same time) helped bring relief, although the discomfort has never completely gone away, although it doesn’t interfere with my activities or quality of life at this time.

Response:

Hello everyone. My wife’s had increasingly severe shoulder and knee pain over the last month. She began on Arimidex in September. I’ve read that about 30% of patients on Arimidex experience joint pain. She’s had a bone scan, chest x-ray and bone density test… all are normal. She’s tried ibuprofen, no relief. Tried Celebrex, still no relief. Does anyone have any ideas/suggestions? At the risk of sounding like a homeopath, what about condroitin-glucosamine? Thanks to each of you for being here. Have a blessed Christmas! Scott

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Metastatic Breast Cancer

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FOR CAROL ANN – Friday's Challenge Check In

Question:

Meowzer is down to 298, new numbers are 322/298/145

Response:

A half-pound gone… 262 now. 347/262/??? Since 8/5/02 — Nancy Howells (don’t forget to switch it, and replace the to send mail).

Response:

Another pound gone (not sure how I did that given what I’ve been eating, but I did) down to 241 and halfway to my initial goal! — Lexin www.redrosepress.co.uk www.livejournal.com/~lexin LC since 9 June 2003 (300/241/182)

Response:

After a hearty meal and a trip thru Sam’s Club (love those samples <g) I weighed in at 298.9. So I’m claiming 299 for the week. — Stephen S. 331/299/220 <- as of 19 Dec. 03 LC since 28 Sept. 03 http://dragonfen.com/diet

Response:

This is my first check-in of the month. I’ve had a very stressful month, with my mom being in the hospital with metastatic breast cancer. Inasmuch, my low carb plan has gone straight to hell. I’ve stuffed my face all month with everything from peanut m&m’s (from the hospital vending machine) to slices of vegetable pizza to ice cream to pies to you name it. Total pigging out as a way to deal with the stress. (Though of course the pigging out only causes more stress, as I’ve seen the scale go from 285 on December 1 to 300 today…) I hope the new year bring me a renewed committment to low carb. It sucks to not be able to fit into my clothes anymore. It takes time to drop the pounds but only a matter of days to pile it back on… Boukie 324/300/150 Started Atkins July 1, 2002 December Challenge: 285/300/280

Response:

Where did you find a scale that reads in tenths at a range near 300? Mine reads by half pounds. 308/295.5/165

– Hide quoted text — Show quoted text – After a hearty meal and a trip thru Sam’s Club (love those samples <g) I weighed in at 298.9. So I’m claiming 299 for the week. — Stephen S. 331/299/220 <- as of 19 Dec. 03 LC since 28 Sept. 03 http://dragonfen.com/diet

Response:

Happy Holidays! Checking in this morning at December goal – 215! Enjoy the holidays everyone and I wish you all a Merry Christmas. Janet 262/215/160 August 2003

Response:

In response to Cubit’s post: Davita dialysis center. My mom goes 3 times a week. I step on the scale when I pick her up. They use the scale to check the weight of people before and after dialysis. It has to be that accurate. Its a built into the floor model with digital readout and printer. Since some of the people are skinny as rails and walk in and others are way over 350 lbs. *and* in motorized wheel chairs they had to get one that weighs accurately over a very wide range. Where did you find a scale that reads in tenths at a range near 300? Mine reads by half pounds. 308/295.5/165 After a hearty meal and a trip thru Sam’s Club (love those samples <g) I weighed in at 298.9. So I’m claiming 299 for the week.

– Stephen S. 331/299/220 <- as of 19 Dec. 03 LC since 28 Sept. 03 http://dragonfen.com/diet

Response:

I’m sorry for my late timing, my current weight is 186 pounds… and still dropping — B-D_ Atkins since 11/24/03 199/186/165

Response:

:: This is my first check-in of the month. I’ve had a very stressful month, with :: my mom being in the hospital with metastatic breast cancer. I am so sorry to read about your mother’s illness, Boukie. I do pray for her a speedy recovery. ::Inasmuch, my low :: carb plan has gone straight to hell. I’ve stuffed my face all month with :: everything from peanut m&m’s (from the hospital vending machine) to slices of :: vegetable pizza to ice cream to pies to you name it. Total pigging out as a way :: to deal with the stress. (Though of course the pigging out only causes more :: stress, as I’ve seen the scale go from 285 on December 1 to 300 today…) What’s done is done now. Don’t think about it. Move forward. You have lost 24lbs total. That’s an awesome acheivment. Think baby steps. :: I hope the new year bring me a renewed committment to low carb. It sucks to not :: be able to fit into my clothes anymore. It takes time to drop the pounds but :: only a matter of days to pile it back on… The ONLY way for you to have a renewed committement is to make it! You CAN regain control of your eating and you WILL when you are ready. Have faith in yourself. I believe in you, Boukie. ~Carol Ann www.lowcarblosers.com ~ Home of the Monthly Weightloss Challenge

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Metastatic Breast Cancer

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question for the pros

Question:

I was reading the other day that breast cancer was a systemic disease, not a localized one. That it does not begin in the breast and spread but is systemic. Is this true? I will see if I can find the link. TIA I don’t think so, I think someone has misunderstood. The phrase "systemic disease" is used in respect of metastatic disease where there are secondary cancers elsewhere in the body. Once a cancer has reached this stage and secondaries have been detected in other organs then it is considered systemic because it is assumed to have also spread around the body, even though it has not yet produced any other detectable tumours.

This philosophy has been around for years. I think it originated in the observation that in many types of tumor one is able to ‘harvest’ tumor cells from the blood, even in early tumor stages. Its unclear why so few of these cells go on to become metastases. An anecdote in connection with tumor harvesting: A colleague of mine had a liver tumor removed 1.5 years ago, its histology was a mystery to the pathologists, despite specimens being sent all over the world for help with the diagnosis. Because no-one knew what to do he (a radiologist BTW) had tumor cells harvested from his blood and assayed in Germany. They were able to provide a list of chemos which would work (at least in vitro) against the tumor. We all thought it was a bit ‘alternative’ to go this route, (because of the reputations of institutes that offer such services) but why not if it helped… He backed off getting the ’strong’ chemo schedule in the end because of the reservations he had about the tumor’s malignancy. This week he started chemo for stage IV pancreatic Ca, after removal of 3 more liver mets and a primary tumor in the tail of the pancreas. So maybe there’s something to the idea of cancer in general being a systemic disease, although in this case with first manifestation in stage IV its not surprising that it was already systemic.. — madiba

Response:

Tim wrote << I think it is fairly well established that the growth rate slows as the cancer gets more advanced, for one reason or another. For example big tumours go nectrotic in the centre for lack of blood supply. I thought it was the other way around–that growth rate was more rapid as cancer advanced? <<It’s known that resecting secondaries rarely gives much benefit. I don’t think all the mechanisms are well understood. I gather that much–re the last sentence. However, latest research suggests that if there are only one or two mets, then resection appears to increase long-term survival — i.e. for lung and liver mets, at least.

Response:

I think it is fairly well established that the growth rate slows as the cancer gets more advanced, for one reason or another. For example big tumours go nectrotic in the centre for lack of blood supply. It’s known that resecting secondaries rarely gives much benefit. I don’t think all the mechanisms are well understood. – Hide quoted text — Show quoted text – << . It seeems that if you biopsy a non-metastatic tumour it doesn’t make it metastatic. True, but if you biopsy a malignant area in an invasive manner and then don’t treat it for a period of time that is greater than the established time of routine doubling or growth, it suggests that the procedure had the propensity to help the tumorous areas that were disturbed establish new blood supplies and further proliferate. Then, who knows what else might happen to a cancer that is found to be aggressive or have a faster rate of doubling or growth? As far as making that fact known, that could have dire implications and consequences, especially in areas where there is not the staff to treat in a more timely manner. It is quite easy to gloss over the results or possibilities and use the stats in their favor, and also emphasize the unknown factors which exist to some extent in every scenario. Common sense and knowledge of basic science, however, suggests otherwise…

It doesn’t quite add up. Of course we don’t want delays, all delays increase risk, and there is no clinical reason for delay at this stage except to allow for treatment decisions and for the patient to come to terms with the dx. But whatever proliferation you generate in this process will not have time to grow into chemo-resistant clusters, which must take years unless the cancer is extremely fast growing, so as long as you get chemo within the next couple of years it should clean up. The critical time for metastasis was years before surgery. Tim

Response:

Tim wrote << If you knew that there were still micrometastases around then you could give stronger treatment in those cases. But if you start giving stronger treatment to everyone, just in case, then you kill too many people. Yes, but there are newer treatments that are safer or other meds that can be given along with them to make them safer. There are also different combos of meds that are relatively safe or safer that could be used.

Response:

Tim wrote << Big secondaries surely are. The little ones are suppressed so they aren’t growing so they aren’t spreading. The amount is already growing geomtrically until it gets resource-limited, which it mostly is by the time it gets symptomatic. The seeding mechanisms get less relevant once you’ve got lots of seeds. Do we know for sure that this is the case or just another plausible theory? << . It seeems that if you biopsy a non-metastatic tumour it doesn’t make it metastatic. True, but if you biopsy a malignant area in an invasive manner and then don’t treat it for a period of time that is greater than the established time of routine doubling or growth, it suggests that the procedure had the propensity to help the tumorous areas that were disturbed establish new blood supplies and further proliferate. Then, who knows what else might happen to a cancer that is found to be aggressive or have a faster rate of doubling or growth? As far as making that fact known, that could have dire implications and consequences, especially in areas where there is not the staff to treat in a more timely manner. It is quite easy to gloss over the results or possibilities and use the stats in their favor, and also emphasize the unknown factors which exist to some extent in every scenario. Common sense and knowledge of basic science, however, suggests otherwise…

Response:

Tim wrote << When adjuvant chemotherapy is given after surgical removal of a primary cancer it is hoped that and (micro)metastases are small enough that the chemo will destroy them, Right, but what if, for some reason, that the chemo that is given doesn’t do that and these cells continue to grow. Could not a different chemo be given at some point that might kill all the remaining cells? Or another scenario, what if the chemo started killing the cells but was terminated before all could be given. Would it not have been possible to have given a higher dose or more chemo then and/or in the future? If not, why?

Response:

Tim wrote << When the secondaries finally grow to detectable size, the primary has been generating them for about thirty division times, and there are bound to be lots of free cells circulating in the blood and micrometastases all over the body. Just a thought, could it also be possible that the secondaries are also generating them so that the amount becomes exponential? Also, take a situation like mine. I had an invasive core biopsy done in 5 areas of the tumor on my upper chest (almost above breast on chest wall). After the biopsy several bruises formed which did not heal. I am assuming that new blood vessels were forming in an attempt to heal that area. I then had surgery 23 days after the biopsy. My understanding is that the rate of growth for normal cancer cells is every 23 days. I can only imagine the rate of growth for aggressive cells. What may have happened to my body, cancer-wise, between the biopsy and the actual surgery? <<There seems to be some sort of mutual suppression effect (perhaps a competition for scarce resources), which means that only a few grow to large size. But if you remove the large ones, more quickly pop up to take their place. Couldn’t removing the main tumor result in that happening as well? If that is the case, then why bother removing the tumor? Also, what takes place in someone when a lumpectomy is done and clear margins are not obtained? How does that affect that cancer and future proliferation? <<This is why is it considered incurable. Although it doesn’t look much different from a primary, what is going on in the body is quite different. Now, if we knew how the large tumours suppress the small ones…. I had heard that theory and one dr. suggested that may be a reason for not doing a bilateral…

Response:

Madiba wrote << This philosophy has been around for years. I think it originated in the observation that in many types of tumor one is able to ‘harvest’ tumor cells from the blood, even in early tumor stages. Its unclear why so few of these cells go on to become metastases. An anecdote in connection with tumor harvesting: I have a question about mets. When someone is first dx’d they are often given chemo to take care of any possible cancer cells that are scattered throughout the body. Let’s say, for whatever reason, the chemo did not take care of all the cells. This person is shown to have mets, which are ’small’ some time later. Why would the cancer, for the most part, be considered not curable at that point. If that is the case, wasn’t it uncuurable form the start?

Response:

– Hide quoted text — Show quoted text – Madiba wrote << This philosophy has been around for years. I think it originated in the observation that in many types of tumor one is able to ‘harvest’ tumor cells from the blood, even in early tumor stages. Its unclear why so few of these cells go on to become metastases. An anecdote in connection with tumor harvesting: I have a question about mets. When someone is first dx’d they are often given chemo to take care of any possible cancer cells that are scattered throughout the body. Let’s say, for whatever reason, the chemo did not take care of all the cells. This person is shown to have mets, which are ’small’ some time later. Why would the cancer, for the most part, be considered not curable at that point. If that is the case, wasn’t it uncuurable form the start?

When adjuvant chemotherapy is given after surgical removal of a primary cancer it is hoped that and (micro)metastases are small enough that the chemo will destroy them, lets say for the sake of argument 1000 cell clusters or around three years’ growth. Chemotherapy won’t kill detectable tumours, which are around a billion cells or ten year’s growth, it will only shrink them. Think of it like peeling a potato, the chemo can only penetrate so far into the tumour, in the example I suggested, only the outermost 5 or 6 cells get killed. That’s why you need surgery as well. (however as tumours tend to be leggy things, it can reduce the volume they occupy quite a lot, hence neo-adjuvant chemotherapy (before surgery) for large tumours). So there is a big gap between the size of tumours that chemo can destroy and the size that is detectable. There are unknown quantities of how long the tumour has been metastatic, and how fast the metastases are growing. If these turn out to be low then the cancer is cured. If they turn out to be high, then it isn’t. When the secondaries finally grow to detectable size, the primary has been generating them for about thirty division times, and there are bound to be lots of free cells circulating in the blood and micrometastases all over the body. There seems to be some sort of mutual suppression effect (perhaps a competition for scarce resources), which means that only a few grow to large size. But if you remove the large ones, more quickly pop up to take their place. This is why is it considered incurable. Although it doesn’t look much different from a primary, what is going on in the body is quite different. Now, if we knew how the large tumours suppress the small ones…. Tim Jackson

Response:

– Hide quoted text — Show quoted text – Tim wrote << When adjuvant chemotherapy is given after surgical removal of a primary cancer it is hoped that and (micro)metastases are small enough that the chemo will destroy them, Right, but what if, for some reason, that the chemo that is given doesn’t do that and these cells continue to grow. Could not a different chemo be given at some point that might kill all the remaining cells? Or another scenario, what if the chemo started killing the cells but was terminated before all could be given. Would it not have been possible to have given a higher dose or more chemo then and/or in the future? If not, why?

Detection is the problem. If you knew that there were still micrometastases around then you could give stronger treatment in those cases. But if you start giving stronger treatment to everyone, just in case, then you kill too many people. Tim

Response:

Big secondaries surely are. The little ones are suppressed so they aren’t growing so they aren’t spreading. The amount is already growing geomtrically until it gets resource-limited, which it mostly is by the time it gets symptomatic. The seeding mechanisms get less relevant once you’ve got lots of seeds. Also, take a situation like mine. I had an invasive core biopsy done in 5 areas of the tumor on my upper chest (almost above breast on chest wall). After the biopsy several bruises formed which did not heal. I am assuming that new blood vessels were forming in an attempt to heal that area. I then had surgery 23 days after the biopsy. My understanding is that the rate of growth for normal cancer cells is every 23 days. I can only imagine the rate of growth for aggressive cells. What may have happened to my body, cancer-wise, between the biopsy and the actual surgery?

This point has been raised here several times. One might expect that biopsies would enhance the spread of cancer, but retrospective statistics fails to detect such an effect. One reason is that metastasis isn’t simply a matter of breaking through a lypmh/vein wall, there has to be a change in the tumour to make is less cohesive. Normal tissues after all don’t go sheeding cells into the bloodstream . It seeems that if you biopsy a non-metastatic tumour it doesn’t make it metastatic. There are researchers currently examining the genes involved in the changes in cohesion, and the significant genetic differences between metastatic primary tumours and their metastases. This is a poorly understood area so far. <<There seems to be some sort of mutual suppression effect (perhaps a competition for scarce resources), which means that only a few grow to large size. But if you remove the large ones, more quickly pop up to take their place. Couldn’t removing the main tumor result in that happening as well? If that is the case, then why bother removing the tumor?

Well yes, it does, but only at stage IV. Usually we remove tumours in the hope that they have not yet become metastatic. In cancers where metastasis is already proven, then resectng the primary tumour would usually only be done for palliative reasons. The preferred treatment would be chemotherapy alone. Also, what takes place in someone when a lumpectomy is done and clear margins are not obtained? How does that affect that cancer and future proliferation?

If clear margins are not obtained then further surgery is done, usually within a division time, until it is clear, so there is no history of this situation. As far as surgery spreading the cancer is concerned, the same answer applies as for biopsy. <<This is why is it considered incurable. Although it doesn’t look much different from a primary, what is going on in the body is quite different. Now, if we knew how the large tumours suppress the small ones…. I had heard that theory and one dr. suggested that may be a reason for not doing a bilateral…

Maybe.

Response:

I don’t think so, I think someone has misunderstood. The phrase "systemic disease" is used in respect of metastatic disease where there are secondary cancers elsewhere in the body. Once a cancer has reached this stage and secondaries have been detected in other organs then it is considered systemic because it is assumed to have also spread around the body, even though it has not yet produced any other detectable tumours. Breast cancers begin in the breast and spread. If this were not true then removing part or all of the affected breast would not cure 95% of patients with small cancers detected early, as it does appear to. Of course one might argue that the -causes- of breast cancer are not uniquely in the breast, or even in the individual, but are related to social factors, pollution, lifestyle, race, diet, whatever your flavour of the month. But that is getting philosophical and I don’t think is what you meant. I think there is no question that the point at which a bunch of conditions come together to form what is recognisably a breast cancer, is an event which occurs in the breast. Tim Jackson (amateur, not pro)

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Metastatic Breast Cancer

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POLL : Who survived their time estimation

Question:

I know this seems meaningless. Could each of you post a person who you know of that lived longer, less or the same as what they doctors predicated, so I can get some idea of the time scales involved? Thanks Anth

Response:

Three years ago I was told I had a disease in my lung, I was told two months later I was in both lungs and therefore inoperable. I’m still here. auntie_biotic http://www.tbandu.co.uk

– Hide quoted text — Show quoted text – I know this seems meaningless. Could each of you post a person who you know of that lived longer, less or the same as what they doctors predicated, so I can get some idea of the time scales involved? Thanks Anth

Response:

Sure Anth! My wife was given 12 months on May 11, 2001. She is rallying at this time and seems to have stepped backwards about a month in her fight so I have no problem thinking it’s possible she’ll outlive their forecast by 100%!!! What you have been given is average survival time; some live longer, some shorter. A piece of personal advice from my wife and I: If you are doing something, chemo or whatever, that makes her life a living hell, STOP and find a different way to live. In other words, don’t do anything that ruins the time you have left. My wife quit the Oxaliplatin when it made her so sick. She recovered from the chemo and had 9 glorious months after that!!! Don’t let them ruin the time your Mam has left!!!! ((((((Anth))))))) CAT =(^-^)=

Response:

Three years ago I was told I had a disease in my lung, I was told two months later I was in both lungs and therefore inoperable. I’m still here. auntie_biotic http://www.tbandu.co.uk

<http://groups.google.com/groups?q=Charter++group:alt.support.cancer&h…

Response:

Hi Cat It’s supposed to be a weak chemo without any noticeable side effects. 5FU or something. Anth – Hide quoted text — Show quoted text – Sure Anth! My wife was given 12 months on May 11, 2001. She is rallying at this time and seems to have stepped backwards about a month in her fight so I have no problem thinking it’s possible she’ll outlive their forecast by 100%!!! What you have been given is average survival time; some live longer, some shorter. A piece of personal advice from my wife and I: If you are doing something, chemo or whatever, that makes her life a living hell, STOP and find a different way to live. In other words, don’t do anything that ruins the time you have left. My wife quit the Oxaliplatin when it made her so sick. She recovered from the chemo and had 9 glorious months after that!!! Don’t let them ruin the time your Mam has left!!!! ((((((Anth))))))) CAT =(^-^)=

Response:

It’s supposed to be a weak chemo without any noticeable side effects. 5FU or something.

Hello Anth, Would this be helpful? http://www.cancerbacup.org.uk/info/fluorouracil.htm Hugs J

Response:

My mom was given at most 6 months in dec 2000. she’s still here, and doing quite well, with lots of meds. Kristin (daughter to Verna, dx Metastatic Breast Cancer, dec ‘00)

Response:

Anth, I posted this in the thread: saddend as time grows shorter, but wanted to let you know that one of my best friends had breast cancer w/mets to her liver (it was about a year in between). Last February (2002), she was told this news, and the prognosis was 3 months — very bleak. She hung in there, tho, and had a great caregiving team….and she lived seven months. Regards, Trish

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Late last March, my grandma was diagnosed with lung and bone cancer…. prognosis was 3- 5 months…. she slipped quietly into a coma tonight…. just a little over a year after her diagnosis with small cell lung cancer……

Response:

anth, "guestimates" are just that and i know people who have lived much longer than what the doctors said and some who didn’t. my husband was given 3-6 months and and made it less than 6 weeks. i really think alot of it has to do with the type of cancer one has. love and prayers, jody

Response:

Hi Cat It’s supposed to be a weak chemo without any noticeable side effects. 5FU or something. Anth

Assuming she is getting the injections in a constant drip, she should have minimal side effects. My wife did that with no problems worth mentioning and also took the pill form of 5FU called Xeloda. The Xeloda caused absolutely zero side effects, so try to get her that if possible. It is expensive but that is why you have government funded health care! CAT – Hide quoted text — Show quoted text – Sure Anth! My wife was given 12 months on May 11, 2001. She is rallying at this time and seems to have stepped backwards about a month in her fight so I have no problem thinking it’s possible she’ll outlive their forecast by 100%!!! What you have been given is average survival time; some live longer, some shorter. A piece of personal advice from my wife and I: If you are doing something, chemo or whatever, that makes her life a living hell, STOP and find a different way to live. In other words, don’t do anything that ruins the time you have left. My wife quit the Oxaliplatin when it made her so sick. She recovered from the chemo and had 9 glorious months after that!!! Don’t let them ruin the time your Mam has left!!!! ((((((Anth))))))) CAT =(^-^)=

Response:

Jody what do you think it is ? Do you think it’s frame of mind? Anth

– Hide quoted text — Show quoted text – anth, "guestimates" are just that and i know people who have lived much longer than what the doctors said and some who didn’t. my husband was given 3-6 months and and made it less than 6 weeks. i really think alot of it has to do with the type of cancer one has. love and prayers, jody

Response:

- Hide quoted text — Show quoted text – anth, "guestimates" are just that and i know people who have lived much longer than what the doctors said and some who didn’t. my husband was given 3-6 months and and made it less than 6 weeks. i really think alot of it has to do with the type of cancer one has. love and prayers, jody Jody what do you think it is ? Do you think it’s frame of mind? Anth

I’m a little wary of blaming or crediting length of life as one deals with illness to frame of mind. There’s a bit of the "blame the victim" in that approach, though most of the time that’s not the intention. We know so little about cancer, Anth, and even less about death. Focus on loving and caring for your mom, and if you can, let go of your need to find answers that don’t really exist. Michele ps- in another post you wrote that your mam has started to eat. That is good news . One thing to be aware of is that many people get gas if they eat raw fruits and or veggies. It might be helpful to keep a food diary, so that you can track what your mam eats and how her gut reacts.

Response:

To break my self imposed silence to this group my girlfriend was diagnosed with NSCLC stage 3b on June 5 2002 and was given 6 months to a year to live depending if she opted for treatment or not. She sought aggressive treatment but on April 7th she was admitted into the hospital in very critical condition after she went into sepsis. With each day she has gotten better and with GOD’s help and the help of her critical care physician she may recover enough to return home again (again under hospice home care). We never believed in the numbers game as they never seem to have much relevence when applied to an individual. I do know that love, understanding, caring and a prayer now and then works wonders when all other treatments seemed to have failed. (Jack)ie

Response:

Statistics are just numbers … nothing more and nothing less. Was diagnosed in July of 1999 with inoperable liver mets and given a year to live. A friend of mine completed the same treatment two years ago last month for a large grapefruit size … 15 cm … liver met and is doing good. Over two years without chemo. Thank you God !!! I used to get hung up on statistics and numbers, but not anymore. Have lots of hope. …. Do you know what hope is ? … It’s magic and it’s free… It’s not in a prescription … It’s not in an IV … … It puncuates out laughter … It sparkles in our tears ….. It simmers under sorrow … And dissipates our fears … … Do you know what hope is ? … It’s reaching past today … It’s dreaming of tomorrow … … It’s trying a new way ……. It’s pushing past impossible … It’s pounding on the door … It’s questioning the answers … It’s always seeking more ..It’s rumors of a breakthrough … It’s whispers of a cure .. A roller coaster ride … Of remedies unsure … Do you know what hope is ? .. It’s candy for the soul .. It’s perfume for the spirit … To share it 409 for The Importance of Hope Take care and God bless. Cliff . . " Don’t deny the diagnosis try to defy the verdict. " Norman Cousins . . . " ALL things are possible. Pass it on. "

Response:

My wife has Met colon cancer 6-12 months. 3 years and she still here. My heart and my prayers to everyone – Hide quoted text — Show quoted text -I know this seems meaningless. Could each of you post a person who you know of that lived longer, less or the same as what they doctors predicated, so I can get some idea of the time scales involved? Thanks Anth

Response:

Hi Joe What stage was it when they gave her 6-12 months and was it inoperable? Anth

– Hide quoted text — Show quoted text – My wife has Met colon cancer 6-12 months. 3 years and she still here. My heart and my prayers to everyone I know this seems meaningless. Could each of you post a person who you know of that lived longer, less or the same as what they doctors predicated, so I can get some idea of the time scales involved? Thanks Anth

Response:

anth, i think that is a very debatable question that you ask. personally, i don’t think that frame of mind has anything to do with fighting cancer or any other serious illness. to me, it is kind of like mind and body aren’t in sinc (sp), if that makes any sense. you can take the most strong willed person with an aggressive, fast moving cancer and they can fight it with all that they have. as in surgery, chemo, alternative therapies, positive thinking, anything and everything that they have either heard of or someone has suggested to them and they can do it all. but the mind will continue to function even when the body has had enough and starts to shut down. does that make any sense? i know how hard it is on you having to watch what your mom is going through and the feelings that you have knowing that you can’t do anything for her. you have spent countless hours online trying desperately to find something, anything that could possibly help your mom, no matter how small. you have asked so many questions that there are virtually none left to ask and you still don’t have all the answers that you are looking for. and you may not ever find them. don’t beat yourself up with the guilt that you didn’t (or couldn’t) do anything for her. don’t let them do anything to her that will take away from the time you can have together (ie-anything that is going to make things worse for her). and if it comes down to it and they can’t do anything more for your mom, don’t let family members or friends try to make you feel guilty for doing your best to keep your mom comfortable. for your sake, try and spend quality time with your mom and make the most of it. cherish those good days that she has! and if you have something special that you want to tell her, tell her. make the most of it for both of you. i wish you the best, my friend. i know what you are going through and it is hard. i send you and your mom lots of prayers. love, jody

Response:

says… I know this seems meaningless. Could each of you post a person who you know of that lived longer, less or the same as what they doctors predicated, so I can get some idea of the time scales involved? Thanks Anth

I did, 8/2001 10% chance on surviving one year. Now, if the side effects of my emphesyma doesn’t kill me, longggggg (CEA back to 9, normal for a smoker, back from 142 in jan. 2 tumors gone, primary down to 1 cm. — I tried sniffing Coke once, but the ice cubes got stuck in my nose. Rian

Response:

– Hide quoted text — Show quoted text – says… I know this seems meaningless. Could each of you post a person who you know of that lived longer, less or the same as what they doctors predicated, so I can get some idea of the time scales involved? Thanks Anth I did, 8/2001 10% chance on surviving one year. Now, if the side effects of my emphesyma doesn’t kill me, longggggg (CEA back to 9, normal for a smoker, back from 142 in jan. 2 tumors gone, primary down to 1 cm. — I tried sniffing Coke once, but the ice cubes got stuck in my nose. Rian

Wow, Rian, That is great. How have you been? Glad to see you posting again! Take care, Trish

Response:

still diarhea and anorexia, despite the 4 week Iressa vacation. Have to start again on monday. Am afraid to get renal blood in urin again. That hurts like hell(like a constant bladder infection). I am the one lucky person out of 10.000 that gets that side effect! Lost 25 pounds, and should not lose much more, am now only 7 pds over my ideal weight. But my stomach shrank so much that 100 cals is about my max, and the codein in my paracod supps for fybromyalgic pain makes me sleep so much that I cannot eat every hour, or even find the energy to make something. Am still battling with insurance about supplements, but the endorsment came back with Mr. on it, so the pharmacy wouldn’t deliver. Then I wanted other stuff besides Ensure (it tastes horrible) so they had to make out a new one and only sent me a copy and not to the pharmacy. It was requested at March 13, I hope to get 2 packs a day by April 13th!!! I have a great recipe for instant jewish penicillin for the starved: 1 jar of chickenstock(the kind with a piece of chicken in it and you have to dilute it twice). half pound of ready to cook soupveggies. Cook the veggies, do stock and veggies in foodprocessor, mince. Put in pan, add 3-4 oz of alphabet or angelhair noodles. cook 10 minutes. Very thick, low sodium, delicious, easy to eat. Put in mugs, freeze open. Take out of mugs, store in freezerplastic. Take out one , microwave, presto, 150 instant calories, even traces of protein and veggies. That is my breakfast (at around 10, I am not a breakfasteater(blah). at 2 I take a softboiled egg with a bun. I like to dip into the yolk! At night, when I am not too sleepy or still full, I like some poached fish. I need the supplements for good stuff. 500 empty cals is not enough, not even when you are a couchpotatoe and only 5 ft.! — I tried sniffing Coke once, but the ice cubes got stuck in my nose. Rian

Response:

- Hide quoted text — Show quoted text – still diarhea and anorexia, despite the 4 week Iressa vacation. Have to start again on monday. Am afraid to get renal blood in urin again. That hurts like hell(like a constant bladder infection). I am the one lucky person out of 10.000 that gets that side effect! Lost 25 pounds, and should not lose much more, am now only 7 pds over my ideal weight. But my stomach shrank so much that 100 cals is about my max, and the codein in my paracod supps for fybromyalgic pain makes me sleep so much that I cannot eat every hour, or even find the energy to make something. Am still battling with insurance about supplements, but the endorsment came back with Mr. on it, so the pharmacy wouldn’t deliver. Then I wanted other stuff besides Ensure (it tastes horrible) so they had to make out a new one and only sent me a copy and not to the pharmacy. It was requested at March 13, I hope to get 2 packs a day by April 13th!!! I have a great recipe for instant jewish penicillin for the starved: 1 jar of chickenstock(the kind with a piece of chicken in it and you have to dilute it twice). half pound of ready to cook soupveggies. Cook the veggies, do stock and veggies in foodprocessor, mince. Put in pan, add 3-4 oz of alphabet or angelhair noodles. cook 10 minutes. Very thick, low sodium, delicious, easy to eat. Put in mugs, freeze open. Take out of mugs, store in freezerplastic. Take out one , microwave, presto, 150 instant calories, even traces of protein and veggies. That is my breakfast (at around 10, I am not a breakfasteater(blah). at 2 I take a softboiled egg with a bun. I like to dip into the yolk! At night, when I am not too sleepy or still full, I like some poached fish. I need the supplements for good stuff. 500 empty cals is not enough, not even when you are a couchpotatoe and only 5 ft.!

Couch potato? Only 5 ft? You’re my hero, Rian. So sorry about the mixup and delay on the supplement thing. What kinds of supplements, please? Do they have Parental Nutrition where you are? (I’ve posted about that before, there’s two spellings) "Parenteral and Enteral Nutrition" "eat while you sleep"? How’s about real chicken, put some fat back on ya, eh? I cook up basmati rice, throw in some previously baked chicken or turkey, add some previously steamed (or frozen) veggies. Voila ! instant meal that can be easily rewarmed. You’re right, Ensure has got to be the worst-tasting stuff ever known to man (except maybe urine and CAT’s PHP) Can you not find a pain med without codeine? ( ( ( Rian ) ) ) J- going looking for stomach stretching exercises for Rian

Response:

says… – Hide quoted text — Show quoted text – Couch potato? Only 5 ft? You’re my hero, Rian. So sorry about the mixup and delay on the supplement thing. What kinds of supplements, please? Do they have Parental Nutrition where you are? (I’ve posted about that before, there’s two spellings) "Parenteral and Enteral Nutrition" "eat while you sleep"? How’s about real chicken, put some fat back on ya, eh? I cook up basmati rice, throw in some previously baked chicken or turkey, add some previously steamed (or frozen) veggies. Voila ! instant meal that can be easily rewarmed. You’re right, Ensure has got to be the worst-tasting stuff ever known to man (except maybe urine and CAT’s PHP) Can you not find a pain med without codeine? ( ( ( Rian ) ) ) J- going looking for stomach stretching exercises for Rian

Can you first get rid of the wrinkles on my thighs, butt, arms etc? even my fingers look like I have been bathing for 10 hoours!. (last weigh in 51.9 kilo. chewing stuff is tiring, just swallowing lets me eat more. And I would never have a hose up my nose for food, I gag when a bit of water hits the back of my throat. Tonight I will nuke a salmon filet (3 oz), boil 2 oz instant tagiatelli and warm up half a jar of green asparagus. I just drank a big glass of blueberryjuice (at $US 5 for 11 oz) and had a banana Nutrimo also makes optidrink(csrbo) and Fortimel(protein). Those are nice. and Ensure banana is Ok. http://www.nutricia.nl/medisch/asp/show_group.asp?id=5&prod=10025 Paracod supps are free, just paracetemol supps that you can get OTC you have to pay for yourself. Besides, it does not get rid of all the fribro pain. I take one, when I have a visitor or have to go out, to be alert. — I tried sniffing Coke once, but the ice cubes got stuck in my nose. Rian

Response:

- Hide quoted text — Show quoted text – says… J- going looking for stomach stretching exercises for Rian Can you first get rid of the wrinkles on my thighs, butt, arms etc?evenmy fingers look like I have been bathing for 10 hoours!. (last weigh in51.9 kilo. chewing stuff is tiring, just swallowing lets me eat more. And I would never have a hose up my nose for food, I gag when a bit of water hits the back of my throat. Tonight I will nuke a salmon filet (3 oz), boil 2 oz instant tagiatelli and warm up half a jar of green asparagus. I just drank a big glass of blueberryjuice (at $US 5 for 11 oz) and had a banana Nutrimo also makes optidrink(csrbo) and Fortimel(protein). Those are nice. and Ensure banana is Ok. http://www.nutricia.nl/medisch/asp/show_group.asp?id=5&prod=10025 Paracod supps are free, just paracetemol supps that you can get OTC you have to pay for yourself. Besides, it does not get rid of all the fribro pain. I take one, when I have a visitor or have to go out, to be alert.

Wrinkles maybe Rian, but sagging flesh needs a refill of nutrients. (or cosmetic surgery) Ok, so I don’t know how to convert – 114 pounds? (maybe) and I don’t speak your language but do recognize the words chocolate or vanilla in just about any language. Rian, can someone not be there with you and wake you up to eat, just a little bit, every hour? Then walk you around a bit to get the digestive done and maybe walk off some of the fibro pain too? Is there a pain med that can counter the diarrhea? So you don’t lose nutrition that way? Is there not a spray for the back of the throat that can numb the gag reflex (lidocaine)? (this would only be until your handy-dandy nutrition comes through for you). I sure wish there was more I could do to help. I know, I’m probably a pest, but I do care and mean well. I’ll be thinking of you tomorrow when your Iressa vacation ends. ( ( ( ( ( ( Rian ) ) ) ) ) ) J

Response:

– Hide quoted text — Show quoted text – says… J- going looking for stomach stretching exercises for Rian Can you first get rid of the wrinkles on my thighs, butt, arms etc?evenmy fingers look like I have been bathing for 10 hoours!. (last weigh in51.9 kilo. chewing stuff is tiring, just swallowing lets me eat more. And I would never have a hose up my nose for food, I gag when a bit of water hits the back of my throat. Tonight I will nuke a salmon filet (3 oz), boil 2 oz instant tagiatelli and warm up half a jar of green asparagus. I just drank a big glass of blueberryjuice (at $US 5 for 11 oz) and had a banana Nutrimo also makes optidrink(csrbo) and Fortimel(protein). Those are nice. and Ensure banana is Ok. http://www.nutricia.nl/medisch/asp/show_group.asp?id=5&prod=10025 Paracod supps are free, just paracetemol supps that you can get OTC you have to pay for yourself. Besides, it does not get rid of all the fribro pain. I take one, when I have a visitor or have to go out, to be alert. Wrinkles maybe Rian, but sagging flesh needs a refill of nutrients. (or cosmetic surgery) Ok, so I don’t know how to convert – 114 pounds? (maybe) and I don’t speak your language but do recognize the words chocolate or vanilla in just about any language. Rian, can someone not be there with you and wake you up to eat, just a little bit, every hour? Then walk you around a bit to get the digestive done and maybe walk off some of the fibro pain too? Is there a pain med that can counter the diarrhea? So you don’t lose

nutrition that way? Wouldn’t Lortab or Vicodin (something with codeine in it) help to counter the diarrhea? They seem to have a constipating effect…..just a thought. Hugs to you, Rian! And to you, too, J! Trish – Hide quoted text — Show quoted text – Is there not a spray for the back of the throat that can numb the gag reflex (lidocaine)? (this would only be until your handy-dandy nutrition comes through for you). I sure wish there was more I could do to help. I know, I’m probably a pest, but I do care and mean well. I’ll be thinking of you tomorrow when your Iressa vacation ends. ( ( ( ( ( ( Rian ) ) ) ) ) ) J

Response:

Metastatic Breast Cancer

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Really, really bad night

Question:

I bid for a "used " copy on ebay. I won it for $11 + a few dollars shipping. Just make sure it is the latest edition. Also, they’re other good bc books on ebay for great savings. Joe

Response:

Thank you all so very much for the words of advice and encouragement. Had Dr. Love’s book out of the library (renewed it several times) but I don’t believe it was the latest one. As soon as I finish here I’m off to Amazon to buy my own. Mary in Maryland

Response:

one can also try used books at amazon.com and at half.com

| I bid for a "used " copy on ebay. I won it for $11 + a few dollars shipping. | Just make sure it is the latest edition. Also, they’re other good bc books on | ebay for great savings. | Joe

Response:

Mary, I don’t have any answers for you, but just want to suggest that you may be feeling pain due to the effects of chemo as well as the stress. I found a website where you can actually ask Dr. Susan Love questions on-line and you’ll get a response (probably from her staff, not her directly) in 1-2 weeks. It is http://susanlove.com/community_frames.html. Best, Michelle

– Hide quoted text — Show quoted text – Too much (uninterpreted) info is probably worse than none at all. As background, I had a lumpectomy for what turned out to be @ 3cm tumor of which 1.2 was invasive – stage 1, with the remainder considered stage 0. No lymph involvement. However, tumor was ER negative and HER2 positive. Because of the HER2 I elected chemo when offered – in addition to radiation afterwards. I have now had 2 AC with the third scheduled this coming Thursday. While browsing thru the web tonight on various breast cancer sites, I have become increasingly more worried about the HER2 situation and the fact that in addition to it being an indicator of more aggressive cells there were two other factors I had not been told of – resistance to chemo and adverse outcome. I’ve been concerned about chemo not working since I went to my support group the other night and learned that two of the members had either new tumor growth or recurrence while on AC. Scared me to death and they were not even HER2 positive. I am now very upset. My oncologist told me that I had an 87% survival rate without chemo and 92% with it. I know that most of the HER2 articles dealt with women who had lymph involvement and had metastatic breast cancer and maybe I should not be applying these to my situation but I can’t get it out of my head. Can anyone point me to some recent research? Some of the articles were several years old and I’m sure there must be more recent studies. However, every part of my body seems to be hurting at the moment making me feel like the cancer has spread everywhere. Mary in Maryland (in distress)

Response:

For the patient Dr Susan Love’s Book is the best!

When I was in hospital after my lumpectomy I asked so many questions (not worried, just wanted to know) that the ward sister dumped the Breast Book on my belly and told me to get reading. I did, it was wonderful and I wanted to bring it home but they wouldn’t let me, it had been donated to the Breast Care Unit by a patient who wanted to know as much as she could discover, just like me. Unfortunately she died later but she couldn’t have left a better legacy. That was almost five years ago. I had a birthday (64) and a wedding anniversary (43) a couple of weeks ago. Spouse gave me no present, that’s not unusual, he says he can’t think of anything, I’ve come to accept it. Nobody’s perfect but he comes pretty close in everything else Two days ago he had a phone call, something he’d ordered was in stock. He’d had an inspiration. It was Susan Love’s Breast Book, third edition, which I’m reading at every opportunity. I’d forgotten a lot and there is new stuff in it too. It’s by far and away the best gift you could have – either from yourself or from someone else. Don’t wait for someone to think of it though, mail Amazon today. That way you won’t have to see the old fashioned look the shop assistant gave Spouse when he first asked for "Susan Love’s Breast Book". He had to insist that it wasn’t pornography. I can see her face if she opened it when it came in – lots of pictures of breasts. In many states … none titillating. It’s beautiful. Don’t lose sleep, instead rejoice in case you’ll come through it. It makes just as much sense as worrying in case you don’t. And hang around here and let us know how you feel. There are some incredibly knowledgeable and comforting people here. I don’t claim to be one but everyone contributes something, even the snake oil purveyors give us a laugh. Hugs, Mary

Response:

The number one predictive factor of a distant recurrence is your node status which you are negative – Yeah! Noe Negative and Node positive status are very different and therefore you can’t compare the two as equal. I just went to a inservice where predictives factors where discuessed aand it thiought to be better Node negative and HER+ ( since there is an effective drug to treat HER+ – herceptin). The fact you are stage 1 is excellent meaning the physicans feel it was confined to the breast. Also you mentioned your 3 cm tumor was only invasive – did you have in situ which I heard is almost never lethal and often Her2 +? The aches in your body are related to the chemo you are getting- for my is felt like the "flu". For the most accurrate information… Medline you can search for medical literature and often they have reports from professional conferences. For the patient Dr Susan Love’s Book is the best! Her site is http://www.susanlovemd.com/ and medline via medscape http://www.medscape.com/px/mscpsearch?searchfor=searchform are the best ( you will have to register for medscape) Last point Lumpectomy and Mastectomy are equal for 5 year survival….but lumpectomy has a much higher ratte for local recurrence in the same breat meaning if you get anohter tumor you will have to have mastectomy and more chemo . Hope this helps …..Alex

Response:

Too much (uninterpreted) info is probably worse than none at all. As background, I had a lumpectomy for what turned out to be @ 3cm tumor of which 1.2 was invasive – stage 1, with the remainder considered stage 0. No lymph involvement. However, tumor was ER negative and HER2 positive. Because of the HER2 I elected chemo when offered – in addition to radiation afterwards. I have now had 2 AC with the third scheduled this coming Thursday. While browsing thru the web tonight on various breast cancer sites, I have become increasingly more worried about the HER2 situation and the fact that in addition to it being an indicator of more aggressive cells there were two other factors I had not been told of – resistance to chemo and adverse outcome. I’ve been concerned about chemo not working since I went to my support group the other night and learned that two of the members had either new tumor growth or recurrence while on AC. Scared me to death and they were not even HER2 positive. I am now very upset. My oncologist told me that I had an 87% survival rate without chemo and 92% with it. I know that most of the HER2 articles dealt with women who had lymph involvement and had metastatic breast cancer and maybe I should not be applying these to my situation but I can’t get it out of my head. Can anyone point me to some recent research? Some of the articles were several years old and I’m sure there must be more recent studies. However, every part of my body seems to be hurting at the moment making me feel like the cancer has spread everywhere. Mary in Maryland (in distress)

Response:

Metastatic Breast Cancer

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New Webstore Supports Cancer Research and Life After Cancer Diagnosis

Question:

I’m a breast cancer survivor with metastatic disease and I would like to announce my new website Blue Moon Videos and Books is a store that supports cancer research, over 50% of the profits we bring in go out to help other causes. Please visit us at http://kilaueavideo.com/?source=albr Namaste’ Toni

Response:

nothing of significance. but To get a glimmer of this "msprozac" … <http://groups.google.com/groups?safe=images&ie=ISO-8859-1&as_uauthors… and this http://msprozac.zoovy.com/ Well, never mind. sick ! sick ! sick ! J

Response:

Metastatic Breast Cancer

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Looking for new drugs

Question:

My wife has very advance metastatic breast cancer. She has suffered through almost all possible chemo treatments for breast cancer available and has been treated for many years at MD Anderson. Now the MD Anderson oncologists do not know what to offer. Where can I find more info on the latest treatments available and clinical trails?

Response:

http://www.clinicaltrials.gov/ct/gui?JServSessionIdzone_ct=jlqmnhbs51 Good luck, and you’re in my prayers! Kathy

– Hide quoted text — Show quoted text – My wife has very advance metastatic breast cancer. She has suffered through almost all possible chemo treatments for breast cancer available and has been treated for many years at MD Anderson. Now the MD Anderson oncologists do not know what to offer. Where can I find more info on the latest treatments available and clinical trails?

Response:

http://www.clinicaltrials.gov/ct/gui?JServSessionIdzone_ct=jlqmnhbs51

Thanks. Just what I was looking for….

Response:

Metastatic Breast Cancer

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"In Person" Support Groups

Femara is a medication used to treat Breast Cancer. Buy discount Femara and feel better today!

Question:

I find this to be a very responsibe arena for getting feedback on information. I tried a support group specifically for metastatic breast cancer and found it to be helpful for a while and then not so helpful as my needs changed and the people in the group changed. The nice thing about support groups, both online and in person, is that you should be able to drop back in when you need to. After all, they are about support. Chris – Hide quoted text — Show quoted text – Do you participate in a face-to-face, non-online breast cancer support group? Would you recommend such groups to newbies here? Why or why not? If you do participate in a group, in what ways is it beneficial, and in what ways is it kind of a drag? Has your group done something particularly wonderful or beneficial that others of us should try to get our group to do? I only went once and the group I attended did not meet my needs. I probably won’t have much of an opportunity to go again because the meeting time conflicts with the hours/day I work. I met a friend of my sister’s, an attorney, who is being treated at the same medical facility as I am, at one of my lsat chemo treatments. I had never thought about going to an outside group, but she invited me. A couple of weeks later I received a call from someone else–a friend of my cousin’s who was treated for b.c. My cousin told her to call me (after she first asked me) just because she had b.c. I wasn’t really sure I needed or wanted to talk w/anyone else at that point but the call happened to be quite informative. Her oncologist, a local private dr., had recently switched her from Tamoxifen to Femara, based on the latest research findings. Since I am interested in trying Femara, it was good to learn of a private oncologist who has been prescribing it. She also told me about different support groups at our local Wellness Center–one is for discussion and the other is for networking. So, when my sister’s friend suggested I come to the one at our health care facility I thought I’d try it–mainly for networking. Most of the participants were old-timers. Only two of us were new. The leader went around and had each person share their story. I was the 3rd person to go so I gave a brief synopsis as the other two had. When we got to the next new person, several persons later, she broke down as she told her story. She had been concerned about a lump for awhile. Initially the dr’s took a wait and see position. She finally convinced them to remove it. It turned out to be malignant but still early enough to be stage "0." I am very supportive, usually, but my gut level feeling was that I wanted to get the he&^ out of there. I didn’t need to hear/see someone who had a prognosis of 99% chance of a cure in that emotional state. I do realize, though, that the "C" word can be quite a scare to mani, if not most. Still, her reaction brought me closer to my own reality at that moment–my bc was pathologically at stage IIB and clinically at stage III with 9 positive nodes. I had at least 3 types of B.C. going on and was in the ‘gray’ area for alot of different things, including several rare factors (including an inflammatory component as well as being both er+ as well as her2+). I have no idea what my prognosis really is (not that any of us do) but do know that the type I had was very aggressive. If only I did have something closer to stage "0" that was or had been less aggressive…sigh… Anyway, instead of feeling positive after that group experience, I came away feeling more down and discouraged than I had been in quite awhile. Professionally, I have led many different types of parent support groups. I had some concerns about the way this one was led or ‘not led.’ There was no structure to it nor were any ground rules discussed–which can be okay for an existing group that doesn’t have new members. There was no mention of confidentiality which was of concern to me. I know and understand confidentiality etiquette because of the above; however, I am not sure the other new person did nor did I have any idea about the other participants. I have thought about seeking out other networking groups just so I know about other community b.c. resources should I ever need them. This includes info. re. which clinical trials are being done by which physicians or other medical facilities. I am sure there is still alot that I don’t know re. b.c. that I would find out about as well.

Response:

Do you participate in a face-to-face, non-online breast cancer support group? Would you recommend such groups to newbies here? Why or why not? If you do participate in a group, in what ways is it beneficial, and in what ways is it kind of a drag? Has your group done something particularly wonderful or beneficial that others of us should try to get our group to do? I only went once and the group I attended did not meet my needs. I probably won’t have much of an opportunity to go again because the meeting time conflicts with the hours/day I work. I met a friend of my sister’s, an attorney, who is being treated at the same medical facility as I am, at one of my lsat chemo treatments. I had never thought about going to an outside group, but she invited me. A couple of weeks later I received a call from someone else–a friend of my cousin’s who was treated for b.c. My cousin told her to call me (after she first asked me) just because she had b.c. I wasn’t really sure I needed or wanted to talk w/anyone else at that point but the call happened to be quite informative. Her oncologist, a local private dr., had recently switched her from Tamoxifen to Femara, based on the latest research findings. Since I am interested in trying Femara, it was good to learn of a private oncologist who has been prescribing it. She also told me about different support groups at our local Wellness Center–one is for discussion and the other is for networking. So, when my sister’s friend suggested I come to the one at our health care facility I thought I’d try it–mainly for networking. Most of the participants were old-timers. Only two of us were new. The leader went around and had each person share their story. I was the 3rd person to go so I gave a brief synopsis as the other two had. When we got to the next new person, several persons later, she broke down as she told her story. She had been concerned about a lump for awhile. Initially the dr’s took a wait and see position. She finally convinced them to remove it. It turned out to be malignant but still early enough to be stage "0." I am very supportive, usually, but my gut level feeling was that I wanted to get the he&^ out of there. I didn’t need to hear/see someone who had a prognosis of 99% chance of a cure in that emotional state. I do realize, though, that the "C" word can be quite a scare to mani, if not most. Still, her reaction brought me closer to my own reality at that moment–my bc was pathologically at stage IIB and clinically at stage III with 9 positive nodes. I had at least 3 types of B.C. going on and was in the ‘gray’ area for alot of different things, including several rare factors (including an inflammatory component as well as being both er+ as well as her2+). I have no idea what my prognosis really is (not that any of us do) but do know that the type I had was very aggressive. If only I did have something closer to stage "0" that was or had been less aggressive…sigh… Anyway, instead of feeling positive after that group experience, I came away feeling more down and discouraged than I had been in quite awhile. Professionally, I have led many different types of parent support groups. I had some concerns about the way this one was led or ‘not led.’ There was no structure to it nor were any ground rules discussed–which can be okay for an existing group that doesn’t have new members. There was no mention of confidentiality which was of concern to me. I know and understand confidentiality etiquette because of the above; however, I am not sure the other new person did nor did I have any idea about the other participants. I have thought about seeking out other networking groups just so I know about other community b.c. resources should I ever need them. This includes info. re. which clinical trials are being done by which physicians or other medical facilities. I am sure there is still alot that I don’t know re. b.c. that I would find out about as well.

Response:

Somewhere in one of the port-a-cath threads, Kaye mentioned her experience with a "live and in person" (i.e., not online) support group (. . . and several people mentioned that they wished this group would talk about something besides port-a-caths and related interpersonal controversy <g). So: Do you participate in a face-to-face, non-online breast cancer support group? Would you recommend such groups to newbies here? Why or why not? If you do participate in a group, in what ways is it beneficial, and in what ways is it kind of a drag? Has your group done something particularly wonderful or beneficial that others of us should try to get our group to do? My answer, for starters: I participate in a monthly BC support group. The meetings alternate between two formats: One month there’ll be a speaker or somesuch that takes up at least half of the two-hour meeting time. The next month, there’ll be "sharing" — just a roundtable discussion, with the attempt that everyone who wants to gets a chance to speak, and that newbies get extra attention. The first time I went, I wasn’t very thrilled. I’ve never been very good about traditionally-female gatherings (baby showers, women’s groups, etc.) — where I feel a misfit — and this had some of that same feeling. I didn’t feel like I had much in common with the other participants (other than the obvious!). But I had read about the research that said there might be survival benefits to support group membership, so I went back. Now, I’m a pretty steady attendee. I’m glad I didn’t give it up after the first experiment. I’d recommend it to others, and recommend giving it more than one try (unless the first meeting is just *majorly* awful!). What’s beneficial: The structured programs have gotten me information (and opportunities to ask questions of experts) that I wouldn’t otherwise have had. Like with this online support group, any BC-related problem one has, others have had, and one can get coping ideas, informed sympathy, etc. The people are very nice, and it’s interesting to hear the perspectives of people who don’t think about things just the way I do. What’s a drag: Sometimes, it’s still uncomfortably like that baby shower milieu, and I don’t feel like I belong. And you know how people use little jokes about what we all have in common as a way of group bonding? As a youngish widow, I’ve found that some of the "aren’t husbands funny" bonding jokes just break my heart, even though I know no one means to be insensitive (nor do I give any indication of how I feel, since I understand that others do benefit/bond from them). Ann

Response:

Metastatic Breast Cancer

0 RESPONSES

my mum

Question:

Hello, 7 years ago my mum had breast cancer and had a mastectomy. Post this she took the drug Tamoxifen. Soon after she was given the all clear. However, earlier this year, after suffering pains in her legs and back and having to push the doctors to take her seriously she has been diagnosed with growths in a number of locations. She is having a couple of lumps on her neck biopsied next week and starts chemotherapy at the beginning of Nov. Obviously my whole family is devastated and I just wondered if there was out there who could help me with some information/help/ideas … anything really would help so that i can better understand/ try to come to terms with whats going on? thks in advance

Response:

Hello Paul What awful news, and how painful, waiting for the results.. I guess no-one will really know what is going on until they get the biopsy results. 7 years is a long time to get a metastatic recurrence of the original breast cancer. If that is what it turns out to be then it would seem more likely that she had another undetected primary somewhere. Or of course it may turn out not to be breast disease at all, but something else completely, perhaps not even cancer. Fingers crossed, good luck. Tim Jackson

– Hide quoted text — Show quoted text – Hello, 7 years ago my mum had breast cancer and had a mastectomy. Post this she took the drug Tamoxifen. Soon after she was given the all clear. However, earlier this year, after suffering pains in her legs and back and having to push the doctors to take her seriously she has been diagnosed with growths in a number of locations. She is having a couple of lumps on her neck biopsied next week and starts chemotherapy at the beginning of Nov. Obviously my whole family is devastated and I just wondered if there was out there who could help me with some information/help/ideas … anything really would help so that i can better understand/ try to come to terms with whats going on? thks in advance

Response:

Paul, I can imagine what a difficult time this is for your family. I pray that her biopsies turn out to be benign. The best thing that you can do is be there for her. You didn’t mention anything about her personally but I know that some of us want to talk about what’s going on, some of us would prefer to remain quiet. It’s difficult to feel so helpless (can you tell that my mother has had a battle with cancer?) but your love and support are very important to her. Please let us know how things work out. Just based on your post, I’ll bet your mum’s on a whole passle of prayer lists. Take care. …lisa

Response:

- Hide quoted text — Show quoted text – Paul, I can imagine what a difficult time this is for your family. I pray that her biopsies turn out to be benign. The best thing that you can do is be there for her. You didn’t mention anything about her personally but I know that some of us want to talk about what’s going on, some of us would prefer to remain quiet. It’s difficult to feel so helpless (can you tell that my mother has had a battle with cancer?) but your love and support are very important to her. Please let us know how things work out. Just based on your post, I’ll bet your mum’s on a whole passle of prayer lists. Take care. …lisa

Hi, First of all thanks for your posts they all really help me to know that there are other people out there who are going through, been through and can sympathise and help. I personally find this and the other cancer newsgroup very therapeutic to share my experience. Lisa, some of me wants to talk to everyone i can, and i know being very like my mum she does to, but there is another part of me that just wants to dissappear and cry at the prospect of not having a mother. Then I think my god my mum is here and we have the chance to share time together, unlike all those poor people who were in the WTC. Also, being 27 I feel like I will be cheated if my mum is not there to see me go further through my life with me. How long have you been going through all this and how is your mum getting on? Tim, thanks for your mail… youre right the waiting is the worst part, but then its another day gone everyday isnt it…. thanks for your crossed fingers though. Dave, it seems your mum is of a similar situation to mine. what happens for her from here then, has chemo finished for good and do they just do cancer marker tests from here or is there another element to treatment? thanks again for all your mails, i cant express how much they help. PAUL

Response:

Paul asked: How long have you been going through all this and how is your mum getting on?

Thanks for asking. My mom is over 15 years out from treatment and she’s doing quite well. She’s now 78 and had a total knee this past spring. I, myself, hit my five year anniversary of my cancer diagnosis this November. You know, no matter how old we get, we’re still our mother’s children. My boys are teenagers – one just began college. They’re trying so hard to grow up and I get my share of, "Awww, mom…"s when I baby them too much. Please keep us posted on how things go…our thoughts and prayers are with you and your family. Take care. …lisa

Response:

- Hide quoted text — Show quoted text – Paul asked: How long have you been going through all this and how is your mum getting on? Thanks for asking. My mom is over 15 years out from treatment and she’s doing quite well. She’s now 78 and had a total knee this past spring. I, myself, hit my five year anniversary of my cancer diagnosis this November. You know, no matter how old we get, we’re still our mother’s children. My boys are teenagers – one just began college. They’re trying so hard to grow up and I get my share of, "Awww, mom…"s when I baby them too much. Please keep us posted on how things go…our thoughts and prayers are with you and your family.

wow 15 years on… your mum must be a real battler.. good on her.. and 5 years seems no mean feet in itself! Nice to hear about positive and ongoing good news for a change! thks again – Hide quoted text — Show quoted text – Take care. …lisa

Response:

Metastatic Breast Cancer

0 RESPONSES

alt tx for metastatic breast cancer

Question:

Hi all, I have metastatic breast cancer — thankfully under control now via hormonal tx (arimidex). I would like to supplement this tx with something complementary and non-toxic, to boost my immune system, and/or fight the cancer that is still remaining. Does anyone have any experience with alt clinics for metastatic br ca? in US or outside does not matter. I have been looking into Coley’s toxins, Burton’s IAT, Dr. Brodie in NV, PSK, Dr. Keith Block, Issel’s work… other stuff I have done: IP-6, beta glucan, molybdenum, co-Q10, Dr. Jeffrey Bland’s nutritional guidelines, stress management, water(!), Larix, NAC, green tea, etc. Thanks for your help! Generosity, kind words, doing a good turn for others, and treating all people alike: these bonds of sympathy are to the world what the lynch-pin is to the chariot wheel. Anguttara Nikaya II, 32

Response:

I belong to an email mailing list of women with breast cancer that are treating their breast cancer with alternative methods. If you are interested in joining, you can get information from this website: http://www.bcforum.org/amazon/curelink.html One of our members has an excellent website: http://www.annieappleseedproject.org/

Response:

thanks for these sites….I am sure they are very helpful to us women with breast cancer. Melissa

– Hide quoted text — Show quoted text – I belong to an email mailing list of women with breast cancer that are treating their breast cancer with alternative methods. If you are interested in joining, you can get information from this website: http://www.bcforum.org/amazon/curelink.html One of our members has an excellent website: http://www.annieappleseedproject.org/

Response:

other stuff I have done: IP-6, beta glucan, molybdenum, co-Q10, Dr. Jeffrey Bland’s nutritional guidelines, stress management, water(!), Larix, NAC, green tea, etc.

How did you take beta glucan? There are many kind of beta glucan (i.e. 1-3, 1-6)and taking it by tablet or pill doesn’t work. Or at least there is no clinical data about any beta glucan tablet, pill or extract. There are many reports about antitumor effect of beta glucan, but you need to take from natural form. I know because my friend who has stage 3 breast cancer. Her tumor shrunk 1/3 of the size, and immune system actually improving. She had researched many products, and found great product called "Royal Agaricus". www.agaricuspower.com Good Luck!

Response:

http://www.genesislaboratories.com I wish you well. Oh…. Oncolyn, cesium therapy, Ellagic Acid, Flaxoil/cottage cheese (Budwig protocol), Transfer Factor Plus, – Hide quoted text — Show quoted text -Hi all, I have metastatic breast cancer — thankfully under control now via hormonal tx (arimidex). I would like to supplement this tx with something complementary and non-toxic, to boost my immune system, and/or fight the cancer that is still remaining. Does anyone have any experience with alt clinics for metastatic br ca? in US or outside does not matter. I have been looking into Coley’s toxins, Burton’s IAT, Dr. Brodie in NV, PSK, Dr. Keith Block, Issel’s work… other stuff I have done: IP-6, beta glucan, molybdenum, co-Q10, Dr. Jeffrey Bland’s nutritional guidelines, stress management, water(!), Larix, NAC, green tea, etc. Thanks for your help! Generosity, kind words, doing a good turn for others, and treating all people alike: these bonds of sympathy are to the world what the lynch-pin is to the chariot wheel. Anguttara Nikaya II, 32

Response:

Metastatic Breast Cancer