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 Bonnie Annis 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
Lower dose tamoxifen
I have taken tamoxifen 20mg for 6 years,I have now had a year off tamoxifen as I stopped taking due to side effects, my oncologist would like me to persist and start taking it again as I’m in my 40s and he considers this young. my surgeon said I could just take less,he said there has been research that says it may be as effective,or I suppose it’s better than not taking it, has anyone doctors been happy for them to take less tamoxifen than 20 mg? And if you take less have you noticed an improvement in the side effects? If so do yo take 5 mg or 10 mg a day?
Nausea after 3 days on Exemestane?
I tried Exemestane for 3 days and felt really nauseaous and stopped taking it. Nausea went away next day. Has anyone else had this side effect after such a short time? I found one old post on Reddit saying the same thing. My oncologist questioned that I could get such an extreme reaction after such a short time.
Letrozole - compound pharmacy
Hello I was wondering if anyone has had any luck with getting Letrozole made by a compounding pharmacy to reduce the fillers and preservatives that come with the commercial Letrozole? I am about to start Letrozole and am trying to minimise side-effects as much as possible from the get-go to increase my chances of staying on it - I am very sensitive to meds, preservatives, etc. With that in mind, I’m very interested in hearing people’s stories and experiences with compounding chemists and hormone therapy. Thank you all :)
Using 'the oil' for Exemestane side effects
Hi there, I'm curious to hear from people who've been using 'the oil' to treat side effects of hormone therapy. I've noticed people don't say the actual name of it, assuming it gets flagged?! To cut my long story short... Diagnosed in June, mastectomy in July, radiotherapy in August/September, and then started hormone therapy September/October. I'm on Goserelin every 28 days, plus Exemestane daily. I'm told this is the plan for the next 5-10 years. However, my joint, ligament and muscle aches are horrible! I've read similar side effects from others on here - where there's a joint, it aches, particularly overnight - I didn't even know elbows and knuckles could ache! My feet are so painful to walk on any time I get up from sitting/lying down. I'd heard a few people say the oil has helped them with these side effects. I've been taking it for 5 weeks now and am quite disappointed that I feel very little effect. I'm taking Altreleaf C B D 100 ISO - 100mg. I take 0.5ml in the morning, 0.5ml at lunchtime, then 1ml at 8pm. He gave me one containing T H C too (because I asked for it ;-) but I can't really use it as you can't have it in your system at all when you drive. I'm 46 and a mum of two young girls so driving is a pretty essential part of my daily life. I'd love to hear it others have tried the oil and had similar disappointment, or any success. I'd also love to hear from anyone who's been on Exemestane and changed to another drug - because I'm told it's brutal and not many women stay on it. I'm thinking my only option really is to switch to something else but worry it'll be the same! Thanks in advance!
Duration of endocrine therapy in premenopausal Australian patients
Hello all Very long time since I’ve poked my head into this discussion forum. I’d like to hear what other younger pre-menopausal patients around the country are being recommend regarding duration of total endocrine therapy. I myself am now onto year 6 of ovarian suppression and AI, a choice I have continued although I could have switched to tamoxifen alone. Please comment with your doctors advice and your stage/diagnosis. Are you doing: 5 years ovarian suppression and aromatase inhibitor 7 years ovarian suppression and aromatase inhibitor 10 years ovarian suppression and aromatase inhibitor 5 years tamoxifen +/- ovarian suppression and then further 5 years ovarian suppression and aromatase inhibitor 10 years tamoxifen alone
Letrozole aches and pains
Hi everyone, I hope everyone is having a good day today :) I was put on Tamoxifin in March after my BC treatment, and then I found I had PALB2 so I had an oophorectomy and my Onc changed my meds to Letrozole now I have no ovaries. My sister in-law is a naturopath and kinesiologist and after all my chemo and radio she tested me and gave me a herb concoction to "clean up the mess". I told her what ever she gives me needs to be hormone free and compliment Letrozole, she has treated many cancer patients before and said all is ok. So, I was feeling ok, well, as ok as you can be for being put into chemical menopause, you know, hot flashes, a few aches and pains, brain fog.. hmmm maybe a bit more than a fog :) not great but I was managing, so my Onc says she isn't happy with me being on the herbs, she cannot know if they are still giving me hormones (or what ever it does) so she told me to stop, she said my body basically needs to go cold turkey on hormones and she needs to be sure nothing is effecting my medication. So, I went off them straight away and literally a week later....hoolie doolie I feel like I've been hit by a truck! My aches and pains in my back, legs, elbows, shoulder, neck are horrible, my legs have that tight tense feeling like they are just about to cramp...all the time! Sleeping is almost impossible, either waking up and staying awake or waking up and tossing and turning from my legs being so restless, and my ears constantly ringing all night. I wonder if those herbs were amazing and helping me through this or they were hindering the hormone therapy. I wish we had a way to find out. I really don't like feeling this way and the lack of sleep just effects everything else in my life and I just feel like I am complaining about my aches and pains all the time. I don't have another appointment with Onc for 12 months now, BC surgeon in 4 months. So my question is...does it get better? I am 3 months into a 7 year course. I am doing light exercise with light weights 4-5 times a week, eating pretty healthy, but I seriously feel like I can't stand, sit, lay, squat down, get back up...anything with it hurting like I have done a 3 hour intense workout and over done it and all I can think right now is that 7 years is a long long time!!! Any advice or feedback will be greatly appreciated, be it good or not so good :) Thanks for listening Sam
Letrozole and GERD
Was taking Letrozole for 13 months when I started getting severe pains around my breast bone (like an alien trying to burst out). I thought it was my heart. Medical oncologist felt it was the Letrozole interacting with my diagnosed GERD and told me to stop for a month then try Anastrozole. Over that month the pain slowly left leaving me very relieved to know I wasn't having a heart attack...lol Been on the new med for 10 days and so far so good. No side effects (touch wood). When I started Letrozole I had hot flushes, joint pain, headaches, immediately. They eased off to just very occasional hot flushes but an enormous weight gain (12kgs). Fingers crossed this new medication is much kinder to me.
Aromatase Inhibitors
Just need some help in deciding on the next step, in Feb I was diagnosed with IDC ER, PR + HER2-, & DCIS in my right breast, no lymph nodes involved. I had surgery & have just completed 15 days radiotherapy & got quite a bad burn area under my arm around the outer breast. I am using Flamigel, salt water flannels to cool & was prescribed some steroid ointment by my GP for burn area. I'm waiting to see how the next 10 days go. Then comes the next hurdle, how do I decide whether to go on hormone therapy or not. I am 73, I was on HRT right up until the diagnosis as I had osteoporosis diagnosed at 49, I have had osteoarthritis since my mid 40s & need a knee replacement, I have a family history of high cholesterol & heart disease, I have Factor V Leiden blood (sticky blood), & have 3 surgeries to remove uterine polyps. I have gastroparesis, & I take several medications already including Palexia tapentadol. I am very tearful (but only when I'm by myself), I'm having trouble sleeping, keep getting hot & cold, & by June I need to decide if I should take medication that may thin my bones & make my joints even worse, & increase my risk of heart attack or stroke. My husband can't see the problem & says just take it. My daughter says the same. I know I am lucky not to have needed chemo, I know I am older when cancer can be expected, I know I will have to die of something, but in my head all I can think about is why would I take a medication that will possibly make all my current problems even worse, just in case breast cancer returns. How do I stop cancer returning if I refuse hormone treatment? Can anyone help with advice?
After 13 years and 2 diagnoses today the biggest celebration yet...
After 13 years and 2 diagnoses today my Oncologist gave me a discharge. A day I NEVER believed would come or would be possible. To anyone who is at the beginning, don't let go of hope that you will get through this. It's definitely not lost on me the many that don't make it this far. So I feel humbled and incredibly reflective of the 13 years that have brought me to this day and to my new normal of who I have become. In 2011 I was diagnosed with ER+ left breast cancer, underwent biopsies, surgery, radiation and tamoxifen. Until 2015 at my yearly checkup the unthinkable, impossible happened, I had a recurrence in the same spot in spite of all the treatment. My world shattered for a 2nd time, another surgery and chemo which was no picnic but I look back and think wow kid...you did that! it was damn hard and you were so sick, but you made it out the other side, put on Arimidex and switched to Aromasin. 1 year on 2017 I was recommended to follow with a mastectomy, so I had a single done and diep flap reconstruction, massive op and difficult. So 6 monthly visits to the Surgeon and Oncologist since 2015. I gave the AI's away about 2 years ago, I had been taking them for 10 years. Thrust into menopause during Chemo, so that was hard to contend with. 6 months with an Exercise Physiologist to help me. Prolia injections 6th monthly for 8 years and today is the day the Oncologist gave me wings to fly...a feeling I've not known throughout the whole ordeal. A closure to this chapter and a possibility of moving forward with my new normal. I managed to get back to work in 2017 and haven't stopped. I work full time in Education particularly in behaviour management and my biggest passion was to publish a book of Poetry which I did recently. Something I may never have done if not from walking this path. I feel more connected to me than I ever was. So today I celebrate just for now I will sit with no thought of what tomorrow might bring. Live a great life everyone, and trust that you are brave enough and strong enough to get through it. PS: This is a link to my first book https://amzn.asia/d/i1vI8JN for anyone who is curious. Hugs xo Melinda