Question:
anecdotal evidence can be the result of a cluster of people who experience the same thing…but there may be thousands of people they don’t know who didn’t experience them…just an odd statistical blip to find 5 (or whatever) together… theoretically. the research is done on a group much larger than 5… although, I am quite suspicious of this Taxol info…I suffered like a monkey on a rock with the pain, the neuropathy…and the pain, in addition to be painful, made me feel very nervous, like I was going to jump out of my skin…
| (Despite the problems I had with it, if I knew it were the best medication | around that might help, I would still opt to take it–even though I feel that | there is something wrong with the information that has been disseminated re. | the degree of potential side effects which, I believe, should probably be | further researched and probably corrected). | | | IME, your post is right on, Kaye. | | I know my Mom’s chemo nurses were much more "up" on the side effects of | Taxol and their remedies . Much more so than her oncologist. He briefly told | her of the possibility of neuropathy and that is all. What else he said was | "If you thought A/C was easy you’ll breeze through the Taxol" He obviously | wasn’t around when she was pacing the house all night because of the pain or | having trouble doing her work on the computer since she couldn’t feel her | fingertips. | | I find it odd, as you say, that the anecdotal evidence is so often contrary | to the information/documentation given out about Taxol by the pros. | | Karen |
Response:
My oncologist told me that most people did not experience the severe pain that I did. However, during my treatment one day I ran into 3 women I had gone to radiation with. Many formed friendships and are still in contact with each other. 3 of the 4 women that I knew experienced similar pain–which we would all describe made us feel like ‘climbing the walls’.
Others have commented on anecdotal evidence, underreporting by test groups, etc., which I agree with. In the "anecdotal" realm, I think that many people are more likely to enter into a conversation if they have a "me too" story (especially when the experience is particularly memorable, good or bad). This may be even more likely among women; I think we’re typically socialized to think that it’s somewhat impolite to disagree, thus more likely to keep quiet if our experiences differ. So I’ll jump in with a "not me", lest those just starting chemo think *everyone* has big troubles with Taxol. I was pretty sick on AC, but Taxol was much easier. Two or three days per cycle of mild bone pain, mostly alleviated with OTC Tylenol, maybe one or two nights when it was nice to take something stronger. Some peripheral neuropathy, which made me butterfingered, but didn’t prevent typing or anything like that (I probably would’ve had trouble with something requiring fine motor skills, like beading or embroidery). And fatigue. If anything, what I was told (and what other who’d gone through it told me) led me to expect less trouble than I had from AC, and more trouble than I had from Taxol. I know & understand that others’ experiences can be totally the opposite. Ann
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<< Like you said Crosem-the side effects are made so much worse by the anxiety of not knowing they are normal. Perhaps to some degree, but I have had an occasionall reaction to other medications that was unexpected and did not experience related anxiety. However, I cannot remember ever being in worse pain than I experienced while on Taxol. I think it must have been nerve pain–one example of just one of the pains that I felt under my toenail was as severe as a bad toothache that I once had which affected the nerve. Two days after getting Taxol these pains started and would occur in several areas simultaneously and migrate to different areas. This pain was on-going. I did not feel sick in any other way except when I developed a fever, I felt more tired. The degree of pain was not influenced in anyway by the fever which was also intermittent.
Response:
anecdotal evidence can be the result of a cluster of people who experience the same thing…but there may be thousands of people they don’t know who didn’t experience them…just an odd statistical blip to find 5 (or whatever) together… theoretically. the research is done on a group much larger than 5… although, I am quite suspicious of this Taxol info…I suffered like a monkey on a rock with the pain, the neuropathy…and the pain, in addition to be painful, made me feel very nervous, like I was going to jump out of my skin…
I know:) Anecdotal evidence is no evidence at all. It is just that, anecdotes. BUT, I find it very odd that out of the dozens of Taxol experiences we have heard about here and I, and others, have heard from patients elsewhere, it seems like more often than not, Taxol is much harder on them than they were lead to believe. It is an awful coincidental blip for a wide range of patient variables (age, health, stage of cancer, other medications) to go so far against the image of Taxol put forth by oncologists. The Taxol webpage seems to be pretty straight forward about itself. It notes that most people have neuropathy and pain is not uncommon. But I also found this page which doesn’t even mention the pain, and this person is researching Taxol? http://www.ch.ic.ac.uk/local/projects/farmer/sidefec.htm I am not debating the use of Taxol at all. The Taxanes have shown themselves quite effective in fighting BC, it’s the lack of accurate info that is being presented by some docs that is worrisome. Like you said Crosem-the side effects are made so much worse by the anxiety of not knowing they are normal. Karen
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<< My Mom found the EXACT same problem. It seems the side effects of the Taxanes are very much overlooked by the medical community. If the pharmaceutical company is not providing accurate information re. side effects re. this drug, it makes me wonder how valid their findings are re its effectiveness based on studies that they have funded? I know of one friend who could no longer work in her profession , due to peripheral neuropathy, after taking Taxol and was never able to return to that profession. However, I do beleive that she had been on it for a long-term (more than 4 cycles). She was a dental hygienist, and her fingers as well as feet became numb. Although I believe some feeling returned, the numbness effected her lower extremities enough, where she felt she had to move from a two-story home to a one-story, after she tripped on the stairs (related to unsteadiness from the neuropathy). There may be something very wrong with the way this drug has been marketed in terms of lack of this information being given and/or based on the populations used in the studies, per so many more negative reports of ‘real’ experiences. I would say that there is an ascertainment bias re. those who are sharing their stories of such on the internet; however, learning of 4 out of 5 women on Taxol (out of a total of at most 12 whom I had met while having radiation who were being treated for breast cancer at our health care facility) who had similar problems on Taxol (when at the time I had met maybe a dozen total who were being treated for breast cancer during my radiation treatments) Taxol while undergoing radiation treatment) suggests there is a much higher percentage of women who experience severe pain than has been reported by the company. Excuse the confusing sentence–while undergoing radiation, I met around 12 other women being treated for breast cancer. I know that at least 5 of them had Taxol. I do not think the others had Taxol, but I am not certain. Out of the 4 that had Taxol, 4 (including myself) ex[eroenced severe pain, that was was so much more intense than any discomfort experienced while receiving AC. Yet, I was told that most do not experience such to that degree. That was not what I learned after talking with other women. I am also wondering how many patients speak directly with their oncologists re. such. Initially, when I called in, I spoke with a nurse who spoke to another oncologist on-call about prescribing pain medication since it was on the weekend. I didn't see my oncologist again until 3 weeks after each treatment. He generally is not around while chemotherapy, which is administered by trained R.N.'s, is given to patients. My doctor's response to me may have been based on reports he'd read by the drug company who manufactures it as well as published research. Perhaps, there has been no research to correct this seemingly flawed difference in what appears to be what many patients' actually experience with Taxol and what has been published? (Despite the problems I had with it, if I knew it were the best medication around that might help, I would still opt to take it--even though I feel that there is something wrong with the information that has been disseminated re. the degree of potential side effects which, I believe, should probably be further researched and probably corrected).
Response:
(Despite the problems I had with it, if I knew it were the best medication around that might help, I would still opt to take it--even though I feel that there is something wrong with the information that has been disseminated re. the degree of potential side effects which, I believe, should probably be further researched and probably corrected).
IME, your post is right on, Kaye. I know my Mom's chemo nurses were much more "up" on the side effects of Taxol and their remedies . Much more so than her oncologist. He briefly told her of the possibility of neuropathy and that is all. What else he said was "If you thought A/C was easy you'll breeze through the Taxol" He obviously wasn't around when she was pacing the house all night because of the pain or having trouble doing her work on the computer since she couldn't feel her fingertips. I find it odd, as you say, that the anecdotal evidence is so often contrary to the information/documentation given out about Taxol by the pros. Karen
Response:
one possibility is that the RESEARCH subjects who were used to calculate the "real" risk of side effects underreported their complications. TO KAY301: I thought the pain in my bones from Taxol was very much worse than the AC. I wound up with 2-3 Duragesic patches at one time, which did not take away all the pain but most of it.
| << I think it demonstrates that the medical community's concept | of risk is completely out of whack with the general population and that | many people don't understand numbers. | | | That could be. However, after my experience with Taxol, I am not so sure. My | oncologist told me that most people did not experience the severe pain that I | did. However, during my treatment one day I ran into 3 women I had gone to | radiation with. Many formed friendships and are still in contact with each | other. 3 of the 4 women that I knew experienced similar pain--which we would | all describe made us feel like 'climbing the walls'. None of us had | experienced that intensity of pain which we did for so long while on Taxol | (lasted 6 days the first time for me)--not even during childbirth (at least not | for me--but then again, I had 3, relatively 'easy' deliveries). | Prior to getting Taxol for the first time I was given a short, one-page summary | of some possible side effects. Joint and muscle pain were listed, along with | peripheral neuropathy amongst others. However, joint and muscle pain were also | listed in the summary I got about AC treatments, and in addition I was shown a | video to help prepare me. | I was not given Zofran prior to my first Taxol, but I wound up vomiting soon | after the treatment started. I wasn't even told that would be a symptom. | However, prior to receiving AC I was given Zofran and then before I went home I | was given 3 different anti-nausea medications to take home. I never needed | anything, although I took a few more doses of Zofran, as had been prescribed. | | In regard to the nausea problem, I am not sure the drug company was at fault | since nausea is listed as a frequent symptom. In that situation I do think my | health care facility was somewhat 'negligent' in providing accurate | information. However, in regard to the degree of pain that many experience | with Taxol, I think that both the drug company and the oncology dept. at my | health care facility did not provide accurate information.
Response:
<< TO KAY301: I thought the pain in my bones from Taxol was very much worse than the AC. I wound up with 2-3 Duragesic patches at one time, which did not take away all the pain but most of it. What I found odd was the incongruency between the way I was 'over-prepared' for the AC and the lack of information provided before the Taxol. I assumed that the Taxol would be, if not easier, not any more difficult than AC. Since I had such an easy time with AC it never occurred to me to seek any further info before I started, especially since none was provided and no forewarning was given. I do not feel that the lack of info. in any way contributed to the difficulty I experienced, especially since I have a fairly high tolerance for pain. Also, afterwards, I did seek out info on two other b.c. forums and was surprised to learn that many others reported similar experiences to mine. re. pain associated with Taxol. Neither Tylenol nor Ibuprofin helped. Vicodan, if taken early enough, sometimes took the edge off. I was on the verge of even trying something stronger. Interestingly, my oncologist once told me that he does not 'listen' to the drug companies but bases treatment decisions on the research. However, if most research these days is funded by the drug companies, what are the chances of some of it being biased? One study I read in the recent past reported that 5% (or was it greater?) of published research was fraudulent.
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The current issue of The Lancet has a brief research letter[1, free access after registration] about how ordinary people estimate the risk of drug side-effects. I think it demonstrates that the medical community’s concept of risk is completely out of whack with the general population and that many people don’t understand numbers.
I agree with you. I also have learned NOT to read the package inserts at first. I start taking the drug, after confirming how to take it with the pharmacist, and ONLY if something starts acting weirdly do I read the list of possible side effects. I find there’s less scope for hypochondria that way. — Aloha, Catharine Character is what you do when no one’s watching.
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<< TO KAY301: I thought the pain in my bones from Taxol was very much worse than the AC. I wound up with 2-3 Duragesic patches at one time, which did not take away all the pain but most of it. What I found odd was the incongruency between the way I was ‘over-prepared’ for the AC and the lack of information provided before the Taxol. I assumed that the Taxol would be, if not easier, not any more difficult than AC.
My Mom found the EXACT same problem. It seems the side effects of the Taxanes are very much overlooked by the medical community. Everyone is so focused on the N&V control of the A/C that the debilitating pain that can be caused by the Taxol is brushed aside. Mom also breezed through the A/C and found the Taxol a miserable and very painful experience. K-
Response:
My ISP seems to have lost this post in a crash, at least I can’t see it. Apologies to anyone who sees it twice. I think this is a realistic view of the numerate skills of the general populace, although one might have hoped for better from Reading, the centre of the UK’s high-technology industry. I hope that a population of maths graduates would have done at least a little better. (Such questions should be made part of their degree paper.) I think most people have difficulty understanding probabilities outside the normal range found in horse-racing, i.e. down to about 2%, and even then only is it is expressed in the traditional form. Beyond that it is necessary to resort to recognisable example. For instance when beef on the bone was banned in England due to the BSE risk, a journalist pointed out that you had more chance of being knocked down on the road by Princess Anne than of getting BSE from a rib roast. This lack of understanding is much played upon by the tabloid media, e.g. in promoting fear of crime, and by lawyers e.g. in DNA evidence. I think this is the real meaning behind the famous quote "There are lies, damned lies and statistics." Tim Jackson PS. Lance, I have been contacted by a representative of an infinite number of monkeys, who would like advice on recycling several cubic parsecs of misspelled copies of Hamlet. :-) – Hide quoted text — Show quoted text – The current issue of The Lancet has a brief research letter[1, free access after registration] about how ordinary people estimate the risk of drug side-effects. I think it demonstrates that the medical community’s concept of risk is completely out of whack with the general population and that many people don’t understand numbers. The Lancet says that the EU recommends classifying drug side-effect frequency into 5 ranges like ‘very rare’, ‘rare’ and so on up to ‘very common.’ The terms are defined as: Very common – 10% of patients Common – 1-10% Uncommon – 0.1-1% Rare – 0.01-0.1% Very Rare – <0.01% The researchers grabbed 200 undergrads (Reading Univ, UK) and told them just about the terms – not the numbers – and asked them to estimate their own risk of side effects. The students thought their risk was: Very common – 65% Common – 45% Uncommon – 18% Rare – 8% Very rare – 4% The researchers had similar results after bothering people at libraries, railroad stations and who were shopping. What totally flabbergasted the researchers (and me) is when they told people about risk using numbers, people still grossly overestimated their own risk: People were told a side effect occurs in 2% of patients, People estimated their chances of getting this side effect as 9.5% People were told a side effect occurs in 0.02% of patients, People estimated their chances of getting this side effect as 7% This is the research equivalent of asking "What is George Bush’s first name?" and getting "Darlene" for an answer. The standard deviations were huge. It was ‘common’ that the SD value exceeded the mean. I’m guessing that some people got the numbers right, but then some people scored risk like 10 to 1000 times higher than reality. Being a numbers-type person, I don’t get it. Lance ***** [1] Research letters: Provision of information about drug side-effects to patients; D C Berry, P Knapp, D K Raynor; pp 853 www.thelancet.com
Response:
The current issue of The Lancet has a brief research letter[1, free access after registration] about how ordinary people estimate the risk of drug side-effects. I think it demonstrates that the medical community’s concept of risk is completely out of whack with the general population and that many people don’t understand numbers. The Lancet says that the EU recommends classifying drug side-effect frequency into 5 ranges like ‘very rare’, ‘rare’ and so on up to ‘very common.’ The terms are defined as: Very common – 10% of patients Common – 1-10% Uncommon – 0.1-1% Rare – 0.01-0.1% Very Rare – <0.01% The researchers grabbed 200 undergrads (Reading Univ, UK) and told them just about the terms – not the numbers – and asked them to estimate their own risk of side effects. The students thought their risk was: Very common – 65% Common – 45% Uncommon – 18% Rare – 8% Very rare – 4% The researchers had similar results after bothering people at libraries, railroad stations and who were shopping. What totally flabbergasted the researchers (and me) is when they told people about risk using numbers, people still grossly overestimated their own risk: People were told a side effect occurs in 2% of patients, People estimated their chances of getting this side effect as 9.5% People were told a side effect occurs in 0.02% of patients, People estimated their chances of getting this side effect as 7% This is the research equivalent of asking "What is George Bush’s first name?" and getting "Darlene" for an answer. The standard deviations were huge. It was ‘common’ that the SD value exceeded the mean. I’m guessing that some people got the numbers right, but then some people scored risk like 10 to 1000 times higher than reality. Being a numbers-type person, I don’t get it. Lance ***** [1] Research letters: Provision of information about drug side-effects to patients; D C Berry, P Knapp, D K Raynor; pp 853 www.thelancet.com
Response:
<< I think it demonstrates that the medical community’s concept of risk is completely out of whack with the general population and that many people don’t understand numbers. That could be. However, after my experience with Taxol, I am not so sure. My oncologist told me that most people did not experience the severe pain that I did. However, during my treatment one day I ran into 3 women I had gone to radiation with. Many formed friendships and are still in contact with each other. 3 of the 4 women that I knew experienced similar pain–which we would all describe made us feel like ‘climbing the walls’. None of us had experienced that intensity of pain which we did for so long while on Taxol (lasted 6 days the first time for me)–not even during childbirth (at least not for me–but then again, I had 3, relatively ‘easy’ deliveries). Prior to getting Taxol for the first time I was given a short, one-page summary of some possible side effects. Joint and muscle pain were listed, along with peripheral neuropathy amongst others. However, joint and muscle pain were also listed in the summary I got about AC treatments, and in addition I was shown a video to help prepare me. I was not given Zofran prior to my first Taxol, but I wound up vomiting soon after the treatment started. I wasn’t even told that would be a symptom. However, prior to receiving AC I was given Zofran and then before I went home I was given 3 different anti-nausea medications to take home. I never needed anything, although I took a few more doses of Zofran, as had been prescribed. In regard to the nausea problem, I am not sure the drug company was at fault since nausea is listed as a frequent symptom. In that situation I do think my health care facility was somewhat ‘negligent’ in providing accurate information. However, in regard to the degree of pain that many experience with Taxol, I think that both the drug company and the oncology dept. at my health care facility did not provide accurate information.
Response:
Lucy 