Forum Discussion
arpie
6 years agoMember
The Choice to walk away from AIs ...... some women are!
An interesting article on AIs and those choosing to not take them.
I’ll continue taking mine tho .....
The Choice to Walk Away From Aromatase Inhibitors
September 1, 2017
RELEVANT TOPICS
Aromatase inhibitors cause unwanted side effects. More and more women are choosing not to take them, but is this a good idea?
The decision to walk away from taking aromatase inhibitors is a choice many women are now making. No longer do they blindly follow the advice of doctors to take medication for the next five to 10 years that may or may not prevent the recurrence of breast cancer. Women are choosing to make informed decisions. They’re doing their homework and learning more about the potential side effects of drugs like Tamoxifen, arimidex, aromasin and femara. Their health care responsibility has shifted from the shoulders of their medical team into their own capable hands as women are discovering they have a right to choose.
Standard adjuvant therapies after a breast cancer diagnosis often include one or more of the following: chemotherapy, radiation treatments, surgery or long-term medications such as SERMS (selective estrogen receptor modulators). According to an article Posted by Breastcancer.org, “Tamoxifen, the generic name of nolvadex, is the oldest and most-prescribed SERM.” It has been used in both women and men diagnosed with hormone receptor-positive breast cancers to reduce the possibility of recurrence. Tamoxifen is the first choice for premenopausal women while aromatase inhibitors are used primarily for postmenopausal women; however, in cases where postmenopausal women cannot tolerate aromatase inhibitors, Tamoxifen may provide an alternative option. Tamoxifen may help reduce the risk of new cancer growth, shrink tumors, help prevent bone loss and lower cholesterol levels.
But even with all of its benefits, Tamoxifen does come with side effects. Some side effects are mild while others are more severe. Common side effects include: hot flashes, fatigue, changes in mood, depression and night sweats. Some of the more serious side effects of Tamoxifen include blood clots, stroke, endometrial cancer and memory loss.
Aromatase inhibitors (AIs), like arimidex, aromasin and femara, are also used to help fight cancer cell regrowth. These drugs work to block cell receptors like estrogen and progesterone in breast cancers that are hormone receptor positive. Aromatase inhibitors have similar side effects to those of Tamoxifen but also affect bone health. Women taking AIs are periodically asked to take a bone density test to rule out physical problems such as osteopenia or osteoporosis.
With a high risk of unwanted side effects, many women are opting out of taking the recommended anti-hormonal therapies recommended by their oncologists. Instead of taking oral medications, these women are choosing to manage their own health through preventative measures such as weight loss, diet, and exercise. Along with these choices, some women choose to add natural supplements to their health care regimen. These decisions are made carefully and are often weighed with the help of family members. Some women make their decision to stop taking medication after trying one drug for a period of time and then possibly switching to another only to find the same debilitating side effects occur. The decision to have a better quality of life becomes paramount. I was one such person.
In my particular case, I was post-menopausal when diagnosed with stage 2B invasive ductal carcinoma. I also had lymph node involvement. After surgery, I met with my oncologist to go over the recommended treatment plan. My plan included chemotherapy, radiation and medication. I talked with my oncologist and asked to be given time to weigh the pros and cons of each treatment option. After taking several days to research and discuss with my family members, I chose not to follow my doctor’s advice for chemotherapy. I did not make the decision lightly. I weighed several factors such as my family medical history, my oncotype DX and fluorescence in situ hybridization (FISH) scores, my stage and grade of breast cancer along with the number of lymph nodes involved. I did agree to radiation treatments and went through 28 rounds of radiation.
When it came time for me to begin the adjuvant therapy of medication, I didn’t expect to have any problems and gladly began taking the first prescribed medication, arimidex. I was told I’d need to take it for 10 years. After several weeks, I began noticing some unwanted side effects. The most prevalent side effect was severe bone and join pain. At that time, I was 56 years old, but felt more like I was in my mid 80s. With the bone pain came horrific mood swings and depression. I found myself crying all the time, which was very abnormal for me. My sleep was disrupted to the point I need to take sleeping pills. I began to experience hot flashes that were more intense than when I was going through menopause. I contacted my doctor and told him I didn’t think I could continue to take arimidex. He explained there were many other aromatase inhibitors and we could try another.
Feeling like this was an important part of my health care, I agreed to try another drug. I was placed on aromasin. Once again, I tried the medication for several weeks with the same type of side effects. I was unwilling and unable to continue suffering the physical side effects and contacted the doctor once again. This time, he recommended I try tamoxifen, which I did reluctantly. For the next few weeks, I took tamoxifen once a day. Every day, I felt worse than the day before. Tamoxifen made me feel even more horrible than I felt on the arimidex or the aromasin. I made another call to my oncologist. My main complaint with tamoxifen was uncontrollable mood swings and joint pain. He recommended we add a medication called Effexor to the mix. Effexor was an antidepressant drug. I argued I wasn’t depressed although I didn’t feel quite like myself. I didn’t want to add another medication to my growing list. At that point, I needed to reassess my situation.
I began to study nutritional supplements and their possible effects on preventing a recurrence of breast cancer. The more I learned, the more I realized I needed to walk away from the prescription medications. Quality of life was important to me. I didn’t want to spend the next five to 10 years feeling physically uncomfortable.
It’s been a little over two years since I made the decision to stop taking arimidex, aromasin and tamoxifen. During that time, I’ve added a host of natural supplements to my daily anti-cancer regimen. I’m happy to report I’m feeling good! No longer do I deal with severe bone and joint pain. No longer do I suffer from gigantic mood swings, depression, bouts of constant crying, and overall fatigue. My decision to stop taking the medication was right for me.
On several breast cancer blogs and forums, I’ve found there are many women who’ve chosen to stop taking their aromatase inhibitors. The majority of them made their choices due to unbearable side effects. When I explained my desire to stop taking the medication to my oncologist, he assured me the side effects would lessen over time and even if they did not, there were other medications that could be added to combat unwanted side effects. I asked, “Why would anyone want to take one medication to prevent the recurrence of cancer and then have to add more and more medication to keep side effects under control?” It doesn’t make sense to me. What makes more sense is to find a way to keep cancer at bay in a natural, healthful way.
I’m so glad I made the choice to walk away from AIs and tamoxifen. I shudder to think how I’d be feeling if I were still taking those drugs today. I hope doctors will begin to listen to their patients and register their concerns. We all deserve a good quality of life, don’t we? Perhaps in the future, doctors will find a better way to help cancer survivors have a brighter tomorrow and hopefully, prescription medication won’t be the answer.
For those who’ve been prescribed aromatase inhibitors and are able to take them, good for you! They have been proven effective in preventing a recurrence of cancer. I would never suggest you stop taking your medication. I am not a medical professional and do not claim to be. I would suggest, if you notice an inability to tolerate side effects, you talk to your doctor and seek advice. There may be a better solution. Each individual must make their own choice based on the information available. Choose wisely. It’s your life. Listen to your body. There’s no reason to suffer in silence.
http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen
12 Replies
- FlatNinaMember
Lots of brave women sharing their stories and their personal decisions here, it makes me feel so close to you all, even though we’ve never met. Thank you all for sharing as it helps countless women faced with similar tough choices.
The one question I personally found to be the most informative was “what is the statistical likelihood of cancer recurrence in my specific case?” From there you can work out the benefit of taking an AI, Tamoxifen etc. They can halve your likelihood of recurrence.
In my case I was told 6% chance of recurrence in 15 years so I would derive a 3% benefit. I chose not to take the drugs given how debilitating my menopause symptoms were. However faced with a much higher percentage likelihood of recurrence my decision would probably have been to try it. Everyone’s case is different and your informed decision is going to the best one for you.
Getting your specific stats is crucial. We know that many, many women have greatly benefited from AIs etc. Equally other women have suffered through treatment that offered little benefit through lack of information. The question is what benefits will YOU derive.
- SisterMemberI agree that it is side effects from lack of oestrogen but, of course, that is what the AI does. I was in menopause (officially) a few weeks before I started chemo although I had been all but for the previous year. I had very few problems from menopause but I have had so much since the remaining oestrogen has been stripped from my body. But I choose to look on this as hopefully meaning I'm having a good response to the drug. The problems are something I have to find out how to manage. At some stage I hope to have an AI holiday but my onc is not keen yet unless I just can't cope any more.
- kmakmMemberJust yesterday when my son mocked me for moving like an old woman (an age to which I aspire), I reminded him that I was taking the drug causing the problem for him.
Letrozole has treated me very badly but I am very determined to keep taking it. I am dealing with a double digit % benefit. So hopefully it's delayed gratification on a massive scale!
I respect the right of everyone to make their own decisions when it comes to their bodies and lives, as long as they are fully informed. - AfraserMemberBoth @primek and @Deanne make good points. Some people are too afraid of both chemo and AIs to try, which is potentially denying a considerable benefit. While deeply sympathetic to those having bad experiences, your own may be different. Being post menopausal before diagnosis, increasing exercise, and taking a small amount of supplements may all have assisted me in reducing/not having some of the most difficult side effects of an AI. I still have some side effects, but they are manageable for me, and like @primek, my bone density has improved in some areas and is certainly not getting any worse.
- DeanneMemberMy experience of this aspect of treatment is that you need to have good information about your own particular situation and discuss side effects with your oncologist. I will have been on either Tamoxifen or Femara for 7 years in November this year.I have had excellent quality of life on Tamoxifen and coped well for most of my 3 years and 3 months on Femara. I have also made many healthy lifestyle changes over the last 7 years. I think some of those may have helped to reduce the impact and number of side effects. But I know that those changes alone would not be enough for me to feel I was doing everything I could to reduce my chance of recurrence.My experience also seemed to be that side effects changed over time on these medications. It took time for my body to adjust to the sudden lack of estrogen (I was 47 at diagnosis) and then I managed pretty well. Femara seemed to be too much for my body to manage after 3 years on it but my oncologist was very supportive and changed me back to Tamoxifen. For me, I think this gives me a good quality of life and better general health.I can understand that everyone has a different personal situation and that these medications can have serious side effects for some. Making informed decisions with good support from your oncologist is important for peace of mind. You cannot base decisions on other people’s experiences.
- primekMemberI think what bothers me is the belief that the side effects are because the medication gives it to you. In reality the side effects are an unfortunate side effect of estrogen suppression.
I went through natural menopause just prior developing breast cancer. I had mood swings, slept very poorly, had lots of hot flushes and just didn't feel like myself. As my body adjusted to the change it settled. I was concerned I would experience the same symptoms again on an AI.
Initially I had such terrible joint pain I took pandol osteo 3 times a day. Weight loss, fish oil and an improved diet settled it down. On letrozole 3 years on my joint pain then got worse. I had bilateral bursitis. I had awful sleep from pain. My oncologist suggested a break from letrozole to see if it was contributing. 3 weeks later my shoulder pain gone and movement was back, my back pain I'd become accustomed too was gone and ankle stiffness gone. I swapped then to anastrazole and thankfully it gave me much less issues. It is definitely worth trying another. I know I can manage it 10 years and my bone density actually improved over last 2 years with vitamin D and exercise.
Although AI block the bodies ability to use the circulating estrogen each drug does it slightly differently.
I know for many women they can't be tolerated. But most can. The stats really do show the advantages of taking them if you can. My concern on these articles is people deciding to not even try for fear of side effects. Our treatment for breast cancer can be brutal yes, but I'm alive 4 years on as I had options that 1,000 of women didn't and get to be here to complain about it. I'm not diminishing the struggles some women experience on AIs by saying this, but it is not all.
I remind us to appreciate the battle and less options women have with tnbc who would gladly swap the opportunity to take a medication that can make a huge statistical difference with survival even with side effects. At least we have a choice. - SisterMemberYep, same here. The side effects of active treatment and now the debilitating impact of the AI for the foreseeable future are hard to take and I get so damn resentful but the alternative is worse. I, too, feel that I have a responsibility to be here as long as I can for my kids.
- ddonMemberI agree Zoffiel. Alternative treatments - ie dietary supplements etc seem very attractive in comparison with a drug that makes you feel ordinary. No one likes taking medication that gives side effects that make you miserable. But none of us want to die of cancer either. And the dying process will make a person feel much more miserable than side effects from the medication to hopefully keep it bay. The problem I think is that in the early stages, breast cancer doesn’t make us feel unwell. The treatment makes us unwell. So, we hate the side effects from the treatment - we went from feeling normal to feeling yuk. We forget sometimes that progressing metastatic cancer will make us feel much worse than side effects. I promised my children that I will do all that is in my power to live as long as I can - for their sake. Regardless of the side effects of medication. It may not work but I will give it my best shot. Not for me. For the ones who love me.
- ZoffielMemberWhile I can well understand the desire to stop taking AI meds, I feel one element that was suggested in the article should come with a monster red flag; alternative therapies will not provide the same level of protection against cancer recurrence. Diet, lifestyle, supplements etc can influence your health, but any suggestion they can used as an alternative to medication that restricts access to the fuel your cancer needs to grow is irresponsible.
Yes, the author adds her own caveat that the decision to stop is her own choice and she has no medical knowledge, however you only have to look at the survival rates since these drugs have been routinely prescribed to realise they do serve a purpose. Much as we hate taking them. And I do hate taking them. - ChezaHMemberYes I am also checking this out, I am not sure I can put up with more side effects from the tablets, I have had lots of side effects from all my chemo and been so sick, and I don't think I can do it for another 5 years. At my age I want quality of life Good to hear what options there are Cheers Cheryl