Has anyone quit or reduced dosage of the hormonal therapy?
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I’ve been taking anastrozole for almost 2 1/2 years and stopped taking it on Sunday night. The aches and pains have become unbearable. I contacted my oncologist and he took me off of it for 1 week and then I am to start taking exemestane. I’m hoping this will be better but I’m not going to stay on it if it isn’t. I will just have to risk it
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you may do better. And if not try letrozole. I’ve tried them all including brand name arimidex. So far letrozole is the best. But I was on Lupron with the exemestane and may try it again due to cholesterol issues.I’m taking it every other day. Arimidex and it’s generic we’re the worst on my arms and hands.
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Jinx27, thanks for the update on the liquid tamoxifen! I was really curious about it. I hope it keeps on being easy on you!
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My oncologist and his office have very little time for me. My other symptoms like depression, foggy brain/memory loss, severe headaches were the key issues (I truthfully had every single side effect of anastrozole one could have) but the MD's up here in Prescott AZ are grappling with a 5x increase in breast cancer due to women not getting their timely mammograms during COVID 19 and now they are swamped with folks who have much more advanced cancer that they are trying to help.
I'm a singer, so my sore throat is very concerning, just not as concerning as other side effects.
I did get approval through Anthem BCBS to try the Aromasin Brand (1131 dollars per month without their support) by trying two generics first and failing. It has been a grueling process.
I have decided if I begin to get the serious side effects I had on exemestane generic, that I'll take this into my own hands and try every other day. Although no MD will recommend that, at 61 I fit into the "elderly" category and I did find a clinical trial that was looking at AI toxicity in elderly people and they did suggest that taking one every two days might improve outcomes for those older folks.
I truly wish that when 50% of women left the clinical trials of exemestane, letrozole and anastrozole that they would have tracked those women for recurrence rates. With my cancer being caught so early, HR+ HER2 negative, Grade 3 Stage 1A, no spread to nodes; why on earth hasn't pharma come up with an AI molecule that doesn't have these horrifying side effects?
Frustrated, scared and don't know what the right thing to do is here. My husband wants me off of them, I'm pretty sure my work would prefer to have a cogent fundraiser...
Kate
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I'm going to try every other day, against doctors orders! I read a clinical trial of "elderly" patients that was entirely about toxicity of AI's in the elderly. At 61 I think I'm elderly and they did conclude that the elderly on a daily regimen had a high percentage of "toxicity" and they even mentioned having those trial participants take them every other day to avoid that pitfall. So AMA I'm going to do that!
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Kate - I am 68 and I take letrozole every other day. I too read some things that suggests that older people don't clear the drugs as fast as younger people and that it can be a concern. My oncologist does not like it, but she has accepted it. Another study I saw said that a MWF dose schedule provides the same benefit (and unfortunately the same side effects) as a full dose. There are those though who say they do feel better and don't have as many side effects on the lower doses, but the study I saw said they noticed no difference in side effects regardless of the dose level or frequency of taking it (this is letrozole of course). I started taking this in January 2019 and I am so miserable with the side effects, even with the every other day dose, that I'm thinking of even going to the MWF idea next January, which would be my 2 year anniversary on this poison.
The other AI's that you've been on and/or tried might be different, but I totally understand your thinking and wish you lots of luck!
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I am on Letrozole too. My main c/o's are being tired and joint pain. Onco ordered Tamoxifin which I have not filled. I'm 63. Have been taking it 1 1/2 years. SE don't seem to be getting any less. Maybe time to try something else. Onco felt a change to a different Al wouldn't make much difference as far as SE went.
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I was originally dxd in 2011. Had the maximum surgery for the smallest cancer.
At that time I got to skip chemo and rads, but the MO insisted on Arimidex. I took it for six months with increasingly severe SEs. She gave me a one month drug holiday and all the SEs disappeared. Went back on Arimidex for another six months and had to quit. Got another one month break, then started Femara. The SEs were disabling and I had no quality of life. I used a walker even for short distances. I became incontinent. I couldn't close my hands without multiple trigger fingers. I cried every day, begging for relief.
The MO finally said that given the details of my cancer and surgery, she felt confident that I could go off the AIs completely. I did, and all the SEs disappeared.
A few weeks ago, I had a biopsy on two tiny nodules in the skin just above my suture line. Pathology report came back positive for papillary carcinoma with microinvasion. It's a new primary, not a recurrence of the original cancer.
I would have celebrated ten years next month.
Now we're looking at trying Tamoxifen. My head is spinning, but I don't regret for a minute having gone off the AIs.
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Blessings2021, I am so sorry about your new primary. What an awful thing to happen! I hope you'll be doing better on Tamoxifen. Sending you positive vibes and thoughts for strength.
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KID1919 - I was offered Tamoxifen too, but declined. My understanding is that overall it is less effective and then to me, the side effects involved with that sound even worse, maybe more dangerous! My sister had tried it for 2 weeks back in 2001 I think. and she just stopped on her own and said "no way!" after experiencing what she felt were intolerable side effects. She had a very small tumor with no spread and now 20 years later she seems to be just fine in that regard. It also sounds to me like the other AI's aren't really any better - 6 of one, half dozen of the other. I've decided to stick with the devil I know.
I've also seen where some research is looking at 3-4 month breaks and even 6 month breaks with the idea that the person taking the AI really does get a break, but then apparently the cancer cells aren't able to develop the resistance that they can when the drugs are taken every day.
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Blessings2021, very sorry to hear your news!
ThreeTree, Maybe I should just suck it up and plan to kinda suffer for at least the next 5 yrs. I hate taking pills to begin with
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Thank you, Rain88 and KIDI919 ....
As much as I whine about the AIs, I will *probably* start the Tamoxifen in September.
Sigh...
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Blessings - so sorry to hear about the new cancer. I had fewer side effects from Tamoxifen (2009-2014) than from AIs. I was already menopaused in 2009, but the oncologist had more confidence in tamoxifen than AIs. I did experience some muscle cramping in one calf muscle, but that mostly went away when I started taking more magnesium. I switched the Mg-CA supplement from 100% CA/50% Mg to 100% Mg/50% CA. But check out the tamoxifen threads, some women experience really bad SEs.
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Aw, Blessings, I am so sorry to hear you are going through this. Personally, I wouldn't rush to take Tamoxifen. I would definitely weigh the pro's and cons. Tamoxifen has a lot of downsides, blood clots, uterine and ovarian cancer etc. Don't rush, write down all your questions and talk with your doctor.
I had IDC and ILC (15 years later in the same breast), had my mastectomy with reconstruction, 6 months on Letrozole and I don't plan to do anything more. I don't plan to do yearly mammograms on my single breast since chance of getting cancer in that breast are only about 8% and that is after 20 years. Of course I am older and doubt I will be alive in 20 years regardless of cancer.
It is definitely a personal decision and you need to do whatever you think is best for you! I don't base what I do on anyone else because in the end it doesn't matter what anyone else does, only what we decide to do for ourselves.
Wishing you all the wisdom and strength to deal with this chapter in your life.
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Thanks, BlueGirlRedState - glad you fared well on Tamoxifen. I will definitely check out those threads.
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Thank you, Mavericksmom... I'm definitely older (70) and due to other comorbidities, will be researching Tamoxifen thoroughly. Unfortunately, no matter how much investigating we do, it's still kind of a crap shoot how we will react.
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Blessings sorry to see you have had a new primary. That stinks. I hope you do well trying the tamoxifen.
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It's been very interesting reading through this thread and reading everyone's experiences with hormone therapy drugs. I'm 63, I've had a lumpectomy with a re-excision and I will start radiation therapy in the next few weeks, and then after that I need to make a decision on whether I want to start hormone therapy. Originally I thought it was a no brainer to take a daily pill but after doing a lot of research and learning about so many other peoples experiences I just don't think I want to even begin. I'm so confused about what to do. Thanks everyone for sharing your experiences so I can factor everything into my decision.
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Im happy you were able to read our grievances, feedback and concerns about hormonal therapy, its quite informative. However I hope that you aren't discouraged from taking it altogether. These drugs can prolong your life and lower a chance of recurrence, there are threads on here that show research proving that.
What I can say is that finding the sweet spot with your medicine (for lack of a better word) takes times. At times it will be trial and error. I think its takes vigilance and advocacy from the patient (you) to speak up about any side effects and keep yourself knowledgeable. You can learn from us!
I hope this helps you decided.
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Jasmine2717: I'm also in my early 60s and started AI a year and a half ago. I've gone through all three of them and finally, I think I'm okay. Honestly, I don't think I'm having any side effects at this moment. I started with letrozole, switched to exemestane and now am on anastrozole. So my advice is to start, if it is recommended. If you have major side effects, you can switch up. Hopefully, you'll find one that works for you. Good luck.
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Thanks, Rah2464!
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Thanks Jinx27 and Kamoboka for your encouragement. Last night I stayed up late reading through a lot of posts on here as well as watching YouTube videos discussing medications and side effects, and while I'm still VERY confused, I think you are both right that it should be tried at least. Silly me to think that surgery would be the hardest part of this whole darn thing!!
I have a question about tamoxifen, on the paper the oncologist gave me it said you can't drink alcohol while on taking this drug! I am not a huge drinker but part of my enjoyment in life is the occasional glass of wine or bottle of beer. Is this really true?! Yikes! Of course I may not even be taking this drug, just curious.
Take care everyone!
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Jasmine - the AIs seem to be successful for some and not so successful for others. There are several AIs out there. SEs are a huge spectrum, minimal for some, severe for others. Talk to your MO about options and why they recommend one over another. If you decide to take an AI and experience SEs, talk to your MO. The MO might be able to counter it, might reduce the dose, or might try a different AI . Many people post on different threads what relieved some SEs for them. Somebody mentioned a Breast Cancer Index, which is supposed to provide information on which one might be better for an individual based on the tumor and their genetics. https://www.breastcancerindex.com/resources-providers?gclid=EAIaIQobChMI-8_urMC28gIV7z6tBh0fbAUMEAAYASAAEgITcPD_BwE&gclsrc=aw.ds
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Jasmine2717: I have been taking Tamoxifen for over 16 months and do indulge in an occasional glass of wine. I did not experience any ill effects on those occasions. I was never told that I shouldn't drink while on Tamoxifen, but maybe I should take a closer look at the information that comes from the pharmacy when they fill my prescription 🤷♀️ Perhaps it's yet another example of how some people experience certain side effects and not others. Good luck with whatever you choose to do.
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Jasmine - I take letrozole, but with that one too, they say you shouldn't drink alcohol. I have tried the occasional glass of wine without too much trouble though. Like you, I enjoy an occasional glass of wine or beer. The letrozole does make it all less desirable though, at least for me. I take my letrozole every other day rather than every day like you are supposed to, and if I do have a glass of wine, I take it on the day I don't take the pill, because I found that if I have the wine on the same day I take the pill, I get a bad headache real fast (as if I've had 5 glasses of wine) and it can even last for days!
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Jasmine, my MO said alcohol was fine, if not in excess. However, I found I would not enjoy it that much cause it made me feel queazy. I guess like many other SEs, it can be different for everyone. I am currently off Tamoxifen, waiting to switch to an AI. Good luck, wishing you no nasty SEs.
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Forgot to mention that I also take one of the antidepressants that helps with hot flashes. It really worked for me. I guess the side effect is not being depressed.
So in saying that, there are options to help with side effects as you try out the AI.0 -
I have a similar diagnosis ( node negative, Grade3) and my oncologist wants to put me on endocrine therapy after chemo. For me it seems more challenging than chemo and I’m reluctant to do it
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Hi Traci,
I'm 71 and have been on Tamoxifen for almost 4 years. My only SE is excessive sweating and hot flashes whenever the weather is even a tiny bit warm. But, to me, that's nothing. I too tried a couple aromatase inhibitors and had similar issues. My fingers and hands were killing me, I couldn't sleep and a bunch of other crazy side effects. Plus, they wanted me to go on Prolia which is a problem for people like me with really bad teeth. Tamoxifen has been around a very long time so I trust it and has side effects I can manage. Quality of life matters. Good luck to you.
Susan
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Just dropping by to give an update regarding my liquid tamoxifen journey.
I started taking it on 08/01/21 and today makes day 23. So far Ive experienced the following;
1) Vaginal dryness, atrophy itchiness and a slight odor
Solution: vaginal suppositories seem to be doing the trick, I just have to stay consistent. I also take Seabuckthorn oil and a blend of Omega's to help increase "supple" vaginal tissue.
2) insomnia
Solution: Using CBD oil (sublingual or vape) that is strongly Indica based to help "coach" me to sleep. I have a nightly routine with relaxing music and a candle light shower. This tends to work wonders.
3) increase in hot flashes:
This one is hard to control sometimes, I just let them happen to be honest BUT the Omega blend I take in the morning has Evening Primose Oil in it. Ive read that it can lower the occurrence of hot flashes and is not estrogenic. When I was more physically active I would have less hot flashes, I noticed that. I might have to buckle down and do my walking.
Has anyone take Evening Primose Oil to help with hot flashes/night sweats?
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