Letrozole and dermatitis?
Hi all - I have been on letrozole for about 10 weeks now, following a lumpectomy and radiation for hormone positive ILC. Over the last couple of weeks I have developed a terribly itchy red rash over my legs and arms. My GP is investigating the cause, but I wondered if anyone else had experienced this as a possible side-effect of letrozole? I have seen other posts about rashes being a side effect of other AIs but not so much letrozole? thanks!
Hormone Blockers Weight gain & GLP-1s
Hi Everyone, I am 53 yeards old and 3 years into hormone blockers and am managing (barely) all the side-effects except for one. Weight gain. I have always been fit and active and I am working out more than ever and eating incredibly healthy and nothing seems to make a difference. I have slowly increased from a size 10 to almost a 14 since commencing hormone blockers. I have seen some medical evidence that GLP-1's at a low dose have been helpful for not just weight loss but also a reduction in other side effects as well. Has anyone else had a conversation with their oncologist regarding using GLP-1's and potential benefits? I don't like the thought of taking yet another drug but I am getting to the point of worrying about everything I eat and also cannot afford to keep buying another size up! If anyone has any info on this topic or knows of any specialists in this space I would appreciate it very much, Thanks!!
Letrozole or Tamoxifin?
Hi Fellow Hormone blockers :-) Really need some advise , my situation 60yrs old with thin bones Had 15cms DCIS removed via mastectomy and a 5mm invasive cancer. The oncologist is giving me the choice between the 2 drugs for 5 years. If I was to go on Letrozole it will thin my already thin bones so would need to go on a drip 2 times a year with a bone strengthening drug in it also need permission from the dentist. Tamoxifin apart from the similar side effects it also can cause blood clots and uturus cancer, Im really conflicted. The oncologist is going to mail a lot of material out to me then in a months time we will make a decision. I really wanted to talk to the real people taking these drugs, your experience and if you have been on both your preference? Appreciate your help with this decision :-)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