What Works for Me
I have joined Post-Polio Health International and would like to submit a question. I am a 56-year-old polio survivor who was diagnosed with breast cancer last year. I underwent a lumpectomy, chemotherapy, radiation therapy and my oncologist prescribed Aromacin for the next 5 years. I was unable to tolerate that drug due to its side effect of joint pain. My oncologist now wants me to take Tamoxafin and I am wondering if any other polio survivors have taken that particular drug and, if so, if they were able to tolerate it. My oncologist has never had a polio survivor as a patient before and I feel as if I'm having a difficult time getting him to acknowledge that I might have unique issues and/or needs. Thank you, Marilyn B.
Response #1 from Francine F., posted 8-8-06
Your note was forwarded to me by Joan Headley of Post-Polio Health International. I'm cc-ing this to her as well. This will be long because I really know what you are facing and have a lot to say about it.
I had polio in one leg and on up above my hip into my chest a bit, so I have a paralyzed ankle and foot, a slightly deformed hip, a very small and weak leg which is 2 in. shorter than the other, and am able to walk fairly well, usually with a cane, and have worn an ankle orthotic for 18 years.
I am 58-1/2 and had breast cancer exactly two years ago, mostly ductal carcinoma in situ. I had two lumpectomies, sentinel node removal (2 nodes), and 7 weeks of daily radiation. My tiny dot of invasive cancer was all extracted in my original biopsy, quite fortunately, and I had no node activity, so there was no need for me to have chemo.
I have three women doctors: surgeon, oncologist and radiation oncologist. The surgeon and oncologist treat me as a whole person and realize that while early phase breast cancer can be removed and treated, I can never remove the late effects of polio and I need to think about what makes my life functional and treat myself for full body health. For this reason, I chose not to take these drugs, and will delineate the why's for you below. I am not recommending that you follow what I do, just relating my experience. Breast cancer truly is different for each person and there are always treatment choices to be made based on one's lifestyle and body.
I also had hormone sensitive cancers, reactive to both estrogen and progesterone, so it was suggested to me that I try Tamoxifen and/or Aromacin or Arimidex. I did a lot of research on these drugs and did try Tamoxifen, but my oncologist and I were both fairly certain I would not be able to tolerate it, because I had taken Raloxifene to stave off osteoporosis, and Raloxifene has almost an identical chemical form. I could not tolerate either of them.
My response to both Raloxifene and Tamoxifen is that they caused me severe - and I mean frequent and severe - hot flashes and night sweats and insomnia. If you do not have these responses, you may be able to take Tamoxifen, or Raloxifene. Many people take them with little or no side effects. Raloxifene is also used for breast cancer and there is new and favorable reporting on it, even though it's an "old" drug.
I took Tamoxifen for a couple of months, and kept reducing the dose until I was taking 1/8 of the normal dose. But my insomnia was getting worse and worse; I was sleeping only 5 or 6 hours a night, having night sweats every night so that my sleep was never straight through, and then could not get back to sleep. People would say to me, "can't you just take sleeping pills?" but I did not want to become dependent on them, plus, I cannot afford to be groggy in the daytime as it will cause me invariably to trip and possibly fall. Plus I like feeling clear headed, I have my own business and work full time from Jan-Apr doing tax work. I don't have three hours in the morning to just wake up and wait to feel OK. Some people take Efexor, a serotonin reuptake inhibitor, to counteract the hot flashes, but I tried it and it made me extremely nauseous, and I read that if you have that reaction to Efexor, you will have it every day and it never gets better. The other thing with Efexor is that you have to keep the dose low or it can cause serious depression. I am very cautious about taking one drug to counteract another! Often little is known about long term use.
But like I say, you may try Tamoxifen and have no reaction or very little. I had a difficult peri-menopause and menopause with all these symptoms in spades, and the drugs just brought them back. I was crying and cranky a lot because I was so tired. I figured that if I had to be like that for five years, I was missing the last part of my "youth" and it was just going to wear me out, the last thing I needed.
I must tell you that EVERY BC woman I know, not just polio women, and both older and younger women, have had joint or muscle or bone pain with the aromatase inhibitors ("AI's"), Aromacin and Arimidex. I was in a support group and met at least 30 BC women, and we did a poll, and of the 15-20 who took these drugs, it was 100% that had pain, not the 15-40% that the drug companies say. We in that group now think, and of course this is anecdotal and no proven study at all, that it causes everyone pain and that there are different reactions: Intolerable - I know one woman who has been taking 2 Vicodan every 4 hours for the pain for about three years, which is very dangerous for the liver, besides which, it's addictive and will require her to keep increasing dosage; another younger woman just went off it because it was just really depressing her to be in so much pain and have to take pain killers. Tolerable - would rather be in pain than be in fear of a recurrence; these are women who possibly have less pain or are young enough that they are very active and this counteracts the pain (?). Possibly mistaken diagnosis - Think it's just their age and maybe arthritis, which even some doctors will support, because there is "chemo-induced arthritis" sometimes. But none of those reactions are good, eh?
I have one friend who had treatment very similar to yours. She could not tolerate Tamoxifen, but she tried Arimidex. They told her it would cause pain for a couple of months and then it would subside, but she took turmeric capsules as an anti-inflammatory and the pain actually ended after 10 days and she is now able to tolerate the Arimidex. I have thought of trying it, but, as a polio person, I already have joint and muscle pain and it just seems like inviting trouble (more below).
I was in correspondence with two women who were polio people who had breast cancer while I was in early treatment. One of them was very articulate and tried Arimidex and nearly ended up in the hospital with her bone pain. The other also indicated she was trying Arimidex and having pain with it. The first does hand crafts for a living and could not use her hands on the drug, and could no longer push herself up from her chair - you may, like me, need to use partly arm strength to get out of a chair. When it got so bad that she was about to go into the hospital for it, she went off it instead, as you did.
I saw pictures of her and she is chubby but not obese, which can be a factor in causing joint pain and also difficulty maneuvering. So, my opinion is that clearly the Arimidex was really bad for her, it was not some new arthritis or just pain from obesity. I did some web research and found that a study in Denmark suggested that polio patients might not fare well on the AI's and it was not recommended. (It also indicated that women who had a lot of radiation or chest x-rays as young polio patients had a much higher incidence of breast cancer. I did not have any chest x-rays or radiation at that time since my polio affected my leg, so I do not believe that polio or its treatments made me more vulnerable to BC, I just think it means I have to really think out and plan my treatment options.)
I had to think about whether I wanted to have radiation, because if I have a recurrence, I will not be likely to be able to have a lumpectomy. If I have a mastectomy in the future, I will probably not be able to have reconstruction based on using back muscles. But, there is innovative work being done, so, who knows. So that was a lot to face. I saw a reconstructive surgeon who said that it might be possible to do reconstruction if I ever had a mastectomy, and, chances were I would never have a recurrence, so he kindly told me not to worry, and he totally understood about the polio and the muscle use issues. It was a relief to talk to him.
My surgeon did not agree with my radiation oncologist, who really does not like it that I'm not taking an AI or Tamoxifen. The RO thinks this makes my chance of recurrence 20-25%. My surgeon, who is VERY well read in this area, thinks my recurrence risk is more like 15%. (Of course, there is only one percentage that matters: 0% or 100%. You either have cancer or you don't.) My regular oncologist thinks that it's fine that I am not taking any hormones - which these drugs are, they ARE hormones - since really the research is not very long term on any of them. Like, what are the chances of blood clots and strokes over 20 years? No one knows, but, they do know your chances of blood clots and strokes are higher on them. My surgeon says that the research shows that you may increase your chance of a heart attack or stroke as much as you decrease your chance of breast cancer.
With all that said, and of course these are tough choices, here's what I decided to do.
I keep my weight down as best I can, because weight increases your estrogen level and that can feed any stray cancer if you have the type of cancer that is hormone sensitive. I eat a fairly high protein diet, low in saturated fat, with lots and lots of vegetables, some dairy, a little fruit, and a little grain. I eat very little bread or sweets. Basically it is the "South Beach Diet," which is healthy and tasty. I have a stool to sit at the counter to chop them on days when I am a little tired. I do not take estrogen or progesterone, but I use a VERY low dose estrogen vaginal cream which I have compounded at the pharmacy. It is ESTRIOL cream, NOT estradiol, which is a totally different form of estrogen. I did a lot of research on this and this type of estrogen is not absorbed into the system as much as any of the other estrogen forms that they give you for vaginal dryness and elasticity problems.
I began seeing an acupuncturist who is a specialist in cancer early on. Although I found the acupuncture irritating, so he recommened I switch to massage, he and his partner have developed a regimen of supplements that both boost immunity and counteract all the biology of cancer growth. They study both eastern and western medicine and really are on the cutting edge of this kind of work. My husband is a scientist and researched every single supplement they have me on and they all have been in double blind studies with significant results. They are really expensive, but fortunately one of my BC buddies is a naturopath and she gets them for me at cost. That was just a lucky break. But I find that if you talk about what you need enough, someone often will eventually show up to accommodate!
I take a low dose of aspirin daily. One study showed that women who take aspirin frequently have a much lower incidence of breast cancer, but, of course they don't know why yet. My oncologist said she thought it was a good idea and that she is a big believer in the benefits of aspirin. She is a whiz kid from Stanford with a very good reputation.
I get regular exercise in a pool. I had the program designed for me by an Easter Seals physical therapist in 1999, and then had another polio specialist PT in San Francisco check out the program to see that it was appropriate. I started that long before I had BC, but I continue it and am now able to do over twice as much exercise, meaning I have almost twice and much strength and stamina, as I did 7 years ago. I am in the pool about 3 to 5 hours a week, doing walking, kicks, stretches, arm rotations, and some swimming. Exercise can reduce your chance of breast cancer by as much as 20%. This is part of why my surgeon thinks my recurrence risk is lower, and even my RO is supportive of this. They are all three pushing exercise, and, since as you know this is a tough one for us as polio people, I just make it an absolute priority. I never wear myself out, but, I turn down tea dates with my best friend (even if it annoys her) if I need to get in that pool. And I do gardening and errands. Then I rest, I take naps and get enough sleep at night as best I can.
So, I decided that for me, making my physical health program my top priority was my best defense. Diet, exercise and the supplements, which I will take for another 6 to 12 months and then re-evaluate. The longer it's been since the diagnosis, the lower your recurrence risk gets, and at five years, you have only slightly worse risk than someone who's never had it.
If you are interested in contacting the cancer specialist acupuncture and Chinese medicine organization that I consult with, their name is Pine Street Foundation and their web address is www.pinest.org. You may be able to communicate with them by email. I may be the only BC-polio patient they have, but, it might be worth a shot. I can also send you the list of supplements, but I'm warning you that they are very expensive. Pine St. is not attached to your buying them from them, however; they encourage people to buy them wherever they can for as cheaply as possible. When I asked which ones I could cut out, my practitioner, Michael McCulloch, suggested I just take a half dose of each supplement, until I was fortunate to find the woman who gets them for me at cost. Also I do not think it's wise to take things like this without having someone who sees you and knows your physical condition be prescribing them for you.
Hang in there. I STRONGLY recommend that you see another doctor or two for a second opinion. You need a doctor that respects you as a total person, and doesn't just see you as a walking example of breast cancer, the thing he thinks he knows how to treat. I have two out of three who know that polio affects me every day of my life no matter what other disease I have. You owe that to yourself, to have a doctor that respects and understands your situation. Also, if you get into a BC support group, someone in there can probably recommend a doctor she loves! Very best wishes, Francine F.
Response #1 from Anne J., Torrance, California, posted 8-8-06
I received your question about breast cancer and PPS from a friend (Francine) and am writing you myself.
I had polio at the age of two in 1945 and have had PPS for a long time. I was diagnosed with breast cancer in 2002 and had a lumpectomy, six months of chemo (lots of bone pain) and radiation. I was put on Arimidex which is an aromatase inhibitor (which would include your Aromacin). All aromatase inhibitors have the potential to cause great bone pain in anyone, but with PPS, it's almost a given. Arimidex almost put me in the hospital. My arms and legs were swollen; my fingers wouldn't bend and I was in agony with pain. My oncologist took me off of it but it took three months for it to get out of my system. I then went on Tamoxifen, which I am still taking. I have more bone pain than I used to but it is probably due to PPS. My oncologist (very open to my PPS situation) says Tamoxifen generally doesn't cause pain. I met three other women during my treatment and only one is still on Arimidex. It's the wonder drug of choice, apparently, but if patients can't take it, Tamoxifen works fine.