Aromasin and weight gain, now I know Im not going mad...
Hey all, I had to share this as Ive thought I was going mad all these years, but now I know I'm not. I finished my treatment for my 2nd diagnosis in 2015 and was placed onto Arimidex, I was then changed to Aromasin. Post chemo I put on 6kg, this has blown out into 8kg now, to many they would say it wasn't much. However, in 3yrs I have tried EVERYTHING! exercise and diet, I would lose a little but it would reset itself back or more and now I know why. I am stuck on this for a further 2 yrs after discussions with my Oncologist, but Im upset that this is not discussed in depth with patients. I say this only from the point of full knowledge and understanding, not as to whether I would take it or not. This is purely for knowledge and knowing WHY I cannot get this weight off and so I can stop blaming myself and beating myself up. I will still continue to exercise and watch my diet, eventhough I know whilst on this medication not much will change, knowledge is just power isn't it? in a way Im relieved. Its hard to not get caught up in this post recovery of finding your new normal, but it doesnt help when we aren't told everything. There is light at the end of it I hope LOL Exemestane (AROMASIN) is a steroidal Aromatase Inhibitor (AI) Your extra weight may hang around and increase after chemotherapy if you also take hormonal therapy (tamoxifen or an aromatase inhibitor). If your body shifts into menopause because of chemotherapy, there's a tendency to gain weight. ... It's important to know that the hormone estrogen suppresses LPL activity on fat cells. The enzyme lipoprotein lipase (LPL)plays a major role in the metabolism and transport of lipids, and consequently is a participant in the development of obesity•One of its roles is to remove triglycerides from the blood for storage in both adipose tissue and muscle cells.••Enzyme activity may also explain why some people who lose weight regain it so easily. After weight loss and weight stabilization, adipose tissue LPL is increased and its response to meals is heightened.•People easily regain weight after having lost it because they are battling against enzymes that want to store fat. Fat storage is efficient, and fat oxidation is not•The activities of these and other proteins provide an explanation for the observation that some biological mechanism seems to set a person’s body weight or composition at a fixed point; the body will make adjustments to restore that set point if the person tries to change it. Hope this helps others understand why they can't shift that extra weight post treatment and know you too ARE NOT GOING MAD!!! Hugs everyone, am wishing 2 more years away as currently am 8yrs on combined medications and had enough! xx M
Exemestane and Joint/Muscle/Tendon Pain
I know this subject has probably been done over and over but I am interested in finding out if anyone has had success with controlling severe pain caused by aromatase inhibitors. I have had endometrial cancer and breast cancer. Both primary cancers. Both hormonally driven. As a result I need to stay on HIs possibly for the rest of my life. I'm 54. This journey started when I was 49. I did 14 months on Letrozole and 11 of them were pure hell. The pain I felt was unrelenting. It started in my hands but quickly moved to hips, knees, ankles, feet. Standing was horrible. Walking any distance impossible. I tried: Exercise - aqua aerobics and swimming Tumeric Duloxitine Magnesium Ibuprofen Celebrex My oncologist changed me to Exemestane and I have been on that since February this year after a 4 week break. It is much better but I still have pain when I stand and walk and have developed issues with my Achilles tendon which is very painful. I have dropped the Duloxitine and Tumeric (the pain didn't get worse because of this), still take 100mg of Celebrex morning and night. Use Voltaren emugel and Magnesium (soluble) at night. I take Vitamin D. I have been going to a specialised gym that works with cancer patients and that has also helped but currently I am not going because of the Achilles problem. I have seen a rheumatologist, a physiotherapist, exercise physiologist. I really would like to find a pain medication that actually takes the pain away when I walk so I could walk and get back to the gym a some semblance of normality. I have recently also stopped working, partly because of these issues. So, any suggestions/ideas I can talk through with y medical team.
Aromatase inhibitors
I’ve started reading about this treatment as it has been recommended for me . One article firmly stated chocolate , alcohol and coffee were not recommended. Is that what you all understand?? I mean that seems quite drastic if it’s for ten years 😳 Do you think say a wine once a week would be ok? And I just love my one fresh brewed coffee in the morning. What are you doing if you are on this treatment ? I’d really love to hear your advice . XxAfter 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
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?
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
CDK4/6 inhibitors PBS
Hi, Can someone share their experience or knowledge of who can access CDK4/6 inhibitors? I’m trying to establish what my situation would be in the current PBS environment if I became stage 4. I am on an AI for endocrine therapy. The wording in the PBS documents is unclear it says exclusion criteria - treated with AI for more than 28 days. Is this for mets though or all stage cancers? Given that AI is now preferred choice of endocrine therapy for hormone positive cancer, does this mean if those of us on AI for early stage would not be able to use palbo, ribo or abemociclib if we progressed to stage 4 under PBS ruling and would need to self fund? Thanks everyone.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
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?Arimidex - first 6 months
I was terrified of this drug and the side effects and I even posted on here looking for support and info back in Jan. (The tone police intervened and I have stayed away from this site since because I was too scared to come back. Despite this, I am checking in one last time before I delete my account, in case it is of benefit to anyone newly diagnosed (like I was at the time, truly traumatised and then told I will be starting anastrazole). I want to share that my news is positive in relation to anastrazole. I don’t have any joint or muscle issues, pain, soreness, stiffness, whatsoever (which were my biggest fears). I have a few hot flushes in the evening and a bit of insomnia. I think my hair and skin is more dry and I need to use more leave in hair treatment now. My weight gain is entirely explained by what I have been eating during lockdown and not so much the drug! From the long list of worrying side effects you will doubtless end up reading, I have experienced enone that are ruinous. (I know I will have to monitor bone density.) Maybe things will change over time but I do remember I felt desperate to know or get some reassurance from someone about what the first few months would be like on an AI and was there an actual chance I would not get the worst effects? I hope this account may help someone facing anastrazole for the first time and knowing that it can be okay. Yes I could do without the hot flushes and longer term risk to my bones, but it’s not as bad as I imagined in my head, terrified and newly diagnosed, with little info to go on, or not the info I perceived as useful to me while having a very cold and underwhelming oncologist. I hope others will get the info that they need, here or elsewhere, and feel confident to speak the truth and advocate for what they need.