Has anyone quit or reduced dosage of the hormonal therapy?
Comments
-
Hi blessed girl,
I don’t know if it makes you feel better but I had a lumpectomy in August. I didn’t get my re-excision until January for the DCIS. I was told the same thing- that the DCIS wasn’t a threat so could wait. I did chemotherapy between surgeries, which normally doesn’t treat DCIS.
Just thought I would share that your not the only one. Wishing you well.
0 -
Blessed girl, I had a prophylactic hysterectomy/ bilateral oopherectomy because of my BRCA2 mutation, with the added "bonus" that I could take an AI instead of Tamoxifen. I would love to tell you that it wasn't a big deal, but I'm sure you would like honest stories. I started on arimidex just a couple of weeks after my surgery, and being slammed into menopause like that was tough. My hot flashes were really severe with what felt like panic attacks at least once an hour. I also had pretty debilitating joint pain within a month or so. Those were the major problems, but there were others things as well- fatigue, loss of libido, hair loss, weight gain, etc.
Because I started the AI so soon after my surgery, I didn't know which side effects were from the arimidex and which ones were just due to the sudden menopause. I highly suggest that if you go that route, give your body time to adjust to being in menopause before you throw an AI into the mix. That way you can have a clear picture of how your body reacts to the AI. I wish I had thought to do that. Nobody was rushing me to start on the arimidex after surgery, but at that point I was scared to not be on something.
Surgery-wise, everything went smoothly and I recovered pretty easily. My surgery was done laproscopically so my incisions were pretty small.
I do hope that helps and I'm sorry that I don't have a better report. You might try searching the forum for more stories, since I know that some women do tolerate induced menopause better than I did.
0 -
thank you so much for your stories. It is so helpful to hear them from someone that has gone through something similar, I appreciate you guys sharing them
0 -
Blessed girl, I started lupron shots to suppress ovaries in order to take AI. It lasted for 4 months and I was miserable. A friend who is a doctor suggested having ovaries removed. It was my 3rd surgery within 3 months and it was very easy. I was taking letrozole before the surgery, during, and after. I don't know if SE were attributed to surgically induced menopause or letrozole or a combination of both. I do believe it was letrozole because my symptoms were getting worst and I had to change letrozole to another AI, exemestane. Surgery and recovery were easy, it was a peace of mind that I was in menopause and I didn't have to deal with monthly lupron shots.
0 -
Question for those who took a break from AI.
I get Eligard shots each month ( anyone else get this and not Lupron?!) and at MO’s suggestion, I’m taking a 2 week break from Letrozole. I’m on day 7 and the last 2 days have been having what feels like bad period pain. No sign of that, but it’s like my left ovary really is hurting. Wondering if this is a usual response to stopping AI. I hate to bother my MO with yet another fricking question.
0 -
Hi,
I've had a year of trying the 3 aromatase inhibitors. They are poison to me. My joints hurt so bad that I was popping oxy, prescribed by my pain dr, like they were jelly belly's. I made the decision to stop them completely. Against the recommendations of my oncologist. I had gained 40 pounds from not being able to exercise and just lay around all day, every day.
I read on the NDBI network website that has a cliniclal trial and dosing of letrozole. It states that there isn’t a difference in result with taking a half dose, or taking a full dose every day or even taking 2.5 MWF. I decided I was going to try a lower dose. During the month off, I started eating a plant based diet, starting getting some exercise and meditations. I started taking a half dose of letrozole March 24th. I haven't had any issues so far. I have talked to so many people about these horrible pills. A couple of people have tried them and quit, a lot of times. Then the 3rd or 4th try they didn't have any problems. Also, a few that decided they weren't going to continue at all.
I will tell you, I went in for a check up last week on a lump I found. It's right under my scar. They did an ultrasound and a dye infused mammogram. They decided that they can't be sure it's not benign, I have very dense breast tissue so I have a biopsy tomorrow. Is it because I haven't been compliant? No one will ever know, but I do wish I wouldn't have had issues with them.
Good luck!
0 -
Lillyshere,
I tried all 3 AI”s, bad SE with all. I went back and started on a half dose of Letrozole and I am doing ok on it. I know quite a few people that have tried and tried them and then took a break and went back on one of them and didn’t have any SE’s. I would tell you, take breaks and then keep trying if you can. You never know if/when it’s going to work for you or not.
All the best
0 -
ladyc2020, when I took a break from Letrozole I had slight bleeding one day. I am 65 so that should not happen. I told the dr and they weren't concerned. Currently I am taking Anastrozole which I seem to be tolerating better.
trippositive, I hope all goes well with your biopsy.
0 -
trippositive - fingers crossed for you, definitely hope you get a benign result.
I did read that taking a break can reduce resistance and has the same results for those who do not take a break. I am going to ask about the other AIs and perhaps try one of them.
0 -
My wife is giving serious consideration to stopping the Lupron shots. She has had them for a year, and finds they exhaust her. She is always complaining of being in pain. Any alternatives? Any one done this?
0 -
Vidal1993, I removed the ovaries in order to stop Lupron. It was a very easy procedure and I felt better than lupron. Other medications though have their own SE.
0 -
Hi: I stopped taking Arimidex on April 24, after 11 months (and 2 months on Tamoxifen before then). I stopped because I got carpal tunnel syndrome and trigger thumb. I'm supposedly on the wait list for an operation, but the trigger thumb is improving with a cortisone infiltration--and maybe because I stopped the medication. My oncologist finally agreed with my decision, saying my cancer isn't high risk and the side effects are intense (at least, I consider them that way). She said that with my twice-yearly check-ups, I should be OK. I don't know if this is any help to you gals.
0 -
I started on Letrozole 1st and then switched to Anastrozole in Feb. for a total of 2 1/2 years therapy. I am sick and tired of the SE. I have stopped taking the Anastrozole end of June and the joint pain is better. I don't know if my brain fog is getting any better... HA HA. My oncotype was 18 and with predict I have a 65% chance of living another 15 years with surgery alone. With AI that percent goes up to 70%. Is it really worth 5% to feel miserable for the next however many years I have left? IDK if I'm looking at all this wrong or I'm just in a poor mental state right now. I did read that Cymbalta can help with the SE. Has anyone tried this? I see dr in Sept so I'm just going to stay off of everything for now. Thoughts anyone?
0 -
My onco doesn't talk much about percentages. She said she thinks there is a 5% better chance of survival to 15 years with hormone suppressors. She said, "you did chemo for only a 1-2% raise in survival, so why won't you do the AIs for 5 years?" She's fine if I choose on no further type of AI, but recommended Femara. It is on my desk unopened.
I was 65 at diagnosis, and lately, after stopping Anastrozole, I feel wonderfully well for the first time since surgery/chemo/rads/covid/AIs. I have no serious health issues except heartburn and take no daily meds.
Since my onco was unspecific, I ran the Predict model. It says a 70% chance of living 15 more years without hormone suppression and a 72% chance of living 15 more years WITH hormone suppression. 2% difference. Also, Predict also says a 24% chance of dying of something OTHER than breast cancer in the next 15 years. 24%. And if breast cancer is taken out of the picture, there is a 76% chance of survival to 15 years more. The numbers are messing with my head, as is my fear of trying Femara and feeling so awful like I did on Anastrozole. I just love feeling so well and healthy right now. Gosh the last year has been so hard, but I must say that I feel very lucky that my type of breast cancer was surely not as serious as many ladies have had on this sight. I honestly probably shouldn't be complaining about anything.
There really isn't anyone else for me to talk about this with. My husband HATED my emotional roller coaster on AIs, and was like "You HAVE to get off of those pills." My doc says only, "It's your choice". And I am wavering back and forth like I always do about big decisions knowing that bottle of Femara is just sitting there unused.
So comments from anyone reading this would be appreciated.
0 -
I can understand your dilemma. I took Tamoxifen for 5 years and at the end of the 5th year my MO told me to gradually wean myself off of them. She was concerned that blood clots was a possible side effect and I had one when I was 16 plus my BC was early stage 1b, Grade 1 IDC. I had a lumpectomy and 33 radiation treatments which also made a difference. I was not considered a high risk for a recurrence. My Oncotype score was 11. 8% chance of recurrence.
I didn't have any unmanageable side effects with Tamoxifen but I know women who did. Something has to be said about quality of life. It sounds like from your post that the advantages of taking the drug is minuscule at best.
I would probably chance it given how much better you feel without the drug. Obviously if it were a life and death decision it would be different but it's not.I never considered not taking Tamoxifen because I was scared not to. I never ran the percentages although my chance of a recurrence % was based on taking it for 5 years so I really had no choice.
Good luck in your decision. Do what's best for you and your husband. Life is too short to do otherwise.
Diane
0 -
oldladyblue and edwards750, thank you for your thoughts. i am a totally indecisive person...i buy something and return it 2 days later. I am a worrier and always have been. I literally can not fall asleep some nights thinking about shit that happened 30 years ago. UGH! Oldladyblue, I too feel like there is no one to talk to about this. I called the breast CA navigator, and she just went on about where are you getting your info, why are you reading these articles and yes they do see people with reoccurrences. I know there is no magic answer but on the other hand do we just get treated like everyone has the same dx and tx plan? Anyways I'm staying off AI's til I see dr in Sept. Rereading my posts I know I've gone on and on about the same indecisive decision-making anxiety. My apologies. And i do feel fortunate that my ca was early stage.
0 -
You made me smile, kidi919, you sound like me describing myself: indecisive... shopping and returning things... changing my mind often on unimportant as well as important things... waking up worried at night...
Please don't apologize for your other posts, posting here is a good thing, it helps me a lot to see others' thoughts. I came off the AIs totally in June when my husband's doctor's office receptionist called the Sheriff to have me removed from the office as I started yelling at him when he demanded payment on a 2 year old bill I didn't believe we owed. I just couldn't back down, got too emotional. I can't discuss my fears with my husband at all he is so against the AIs.
0 -
Hi everyone , my onc told me to stop lupron in March '22 and in June check my hormones with blood work. The blood work came back as pre- menopause,so he said to keep off of lupron. Is that ok? I am on Aromasin...it really scares me to be off lupron
0 -
Hi everyone , my onc told me to stop lupron in March '22 and in June check my hormones with blood work. The blood work came back as pre- menopause,so he said to keep off of lupron. Is that ok? I am on Aromasin...it really scares me to be off lupron
0 -
Kiascia, gosh, I know nothing about Lupron. I hope someone sees your post that can help.
I am realizing that I have too have more questions for my doctor, and should get them answered. My treating hospital is the VA, and there are several doctors there. I got a second opinion once before and I think I will ask for one again. The head doctor was MUCH better at going over statistics with me than my regular onc. Maybe you can get a second opinion too.
0 -
This post is super helpful. I'm 43, and was told to start taking arimidex as soon as I finished rads. I finished rads on 6/15, and had my single remaining ovary out on 6/9. I'm still struggling with some side effects from chemo (think cardiotoxicity, anemia requiring transfusions, etc.) Even so, I started the arimidex on 7/1. I was off of it by 7/6. Couldn't handle the mood swings and joint pain that popped up almost instantly, and I wasn't getting any sleep. At this point, I need to shed some side effects before starting any more new meds. I see a new MO next month (mine moved out of state), and hopefully she is on board. I still need to be able to work and exercise and feel good, so there's kind of a high bar for what I'm willing to tolerate in SEs. I regret chemo, and the predicted benefit of that is double my predicted benefit from AIs. We'll just have to see how things play out.
0 -
I stopped the Letrozole about a month ago and my brain fog is gone, my eyes do not feel dry, etc. and I am almost back to feeling like myself except for the normal joint pain I have anyway. I am nearing 70. I am also heading to a scheduled knee replacement on Aug 12. There is no way I would take Tamoxifen with the blood clot risk for joint replacement and the Letrozole was awful. My onc gave me a script for Anastrozole which I filled but doubtful about restart. I am not going to experience that awful brain fog again especially when I have to go to PT (by myself) and care for my home and life alone. I have been too independent for years to have to put up with 5 years of feeling horrible. I also get tired of the unsympathetic medical community always charting "stopped the AI" in their notes as if to cover themselves and not try to understand these toxic side effects women experience. I feel like handing them the bottle and asking them to take them for a couple months and see what they think.
0 -
Racheldog - After 2.5 years, I'm continuing to trudge on with my Letrozole, but I totally understand all of the things you are saying, and I consider doing what you have, every single day.
I also think a lot of what those doctors do is "covering themselves" from legal liability and those chart notes really reflect that. The implication is that everything is "on you,", i.e. they tried but you just wouldn't follow their advice. That said, many of them are nice and understanding, but I too wonder how they'd feel about a lot of this stuff if like you said they just took this stuff for a couple of months to get the idea. I just don't know if I will make the full 5 years, much less 7 or 10. It's hard to believe they don't have a better option than these AI's.
0 -
Thank you Threetree. Being on the AI -- every other day-- as I was doing them---sure proved to me in my own mind how powerful they are in dumping estrogen quickly. The side effects of Letrozole were plentiful just on that dosing. One of the responses I got from a provider was "so when are you going to ramp up the dose?" So unsympathetic to even listening to patients IMO. I cannot believe how the brain fog issues and other side effects have gone since I stopped. Will think about restart but not until I have this surgery which you need all the brain and muscle power you can muster to get through PT, etc.
I am still looking for articles on de-escalation for older women on these toxic drugs.
0 -
Hello everyone! I just saw my MO yesterday and asked her opinion of me taking a break from tamoxifen. She said she didn’t like the idea but said a 4-6 week break probably wouldn’t hurt. We did discuss the risks of stopping completely. I am low risk on my mammaprint but clinically high risk. She of course said stopping would not be the best thing for me. She did say that according to some studies 10mg can be as effective as 20, but followed with the fact that doesn’t really apply to my cancer. She said 10 mg was better than nothing and we agreed that I would take the break and then start back on 10 mg to see how I feel.
The reason behind this is that I have extreme fatigue on tamoxifen, and I describe my emotional state as if someone took away my ability to feel joy. I don’t recognize myself anymore, physically or mentally. One comment that got me was that she said that taking the break will tell me if it is the tamoxifen or “just aging.” I have felt like this since a couple months into starting this med and I was 46 when I began taking it. I am now 50, If this is how I feel now due to aging I am going to be useless by the time I am 60. I did take a break when I had a surgery and started to feel like myself so I am hoping I can tolerate the 10mg better.
0 -
Dani that "break" will be very helpful for you. Tamoxifen can be a very difficult drug to take at least it is for me. Its a struggle mentally and physically with the fatigue. Do you know if you are menopausal yet? Is an option to try an AI? I am four years in on the T and the breaks help me keep my sanity.
0 -
Dani, I am now on week 5 of a 6 week break from Tamoxifen. I chose to do this without discussing it with my MO because I was desperate for some relief from the side effects, even if it’s only temporary. Much to my dismay, I’m not feeling much better, and in some respects I am feeling worse. On the plus side, the horrible night time leg cramps have decreased, but the hot flashes, fatigue and brain fog actually seem worse. Wasn’t expecting that! I plan to start taking the Tamoxifen again next week, and will start with 10mg and add the second 10 mg dose after about a week.
I hope that your experience off of Tamoxifen is better than mine has been. Best of luck going forward.
0 -
I started the Anastrozole in March, and have been off now a few months. I am staying off of the AIs. The unopened bottle of Letrozole on my desk isn't bothering me anymore, I didn't try another AI and am at peace with my decision. The months on Anastrozole were messing with my mental stability and body energy, and the pain was so constant. If I hadn't had severe side effects (my feeling that they were severe, as I can't really compare myself to others, only to myself) I feel the quality of life was so much lowered for me on the estrogen suppressors. I am back to "normal" now, lots of energy, good outlook on life, no blazing instant arguments, sleeping well most nights. If I hadn't felt so badly on these, I would have taken them for 5 years without question, as I don't like disobeying doctors' recommendations. Good luck to all of you with your own treatments. There are so many individual choices! I turn 66 in November and will probably throw myself a party now that cancer and covid (2 shots, 2 boosters and recovered from Feb illness) are over for me.
0 -
Dani, Rah and Mom2, I was on tamoxifen for 3.5 years when i really started to revolt and asked my MO what he thought about reducing the dosage. I suggested 10mg from 20, he suggested 20mg every second day.. so I chopped my 20 mg tabs in half and took a half every day for 6 months and then I started taking a half one every other day... I made it to 4 years and like 10 months and had enough.. my hair was falling out in clumps, my skin was dry and my fingers cracked all the time, I had scales on my scalp and i just felt like shit. Since i stopped taking tam 18 or so months ago, i feel so much better.. in every way. Then a few weeks ago, after my annual mammo i was recalled due to microcalcifications. I had a core biopsy and am having another lumpectomy on the 11th.
Do i think this is because I stopped taking tam? i have no idea but I still feel great and if it is cancer, it's a new primary, it's very new and highly treatable.
There are risks. There will always be risks. there are risks if we've had cancer or we haven't, we have to balance our QOL with the risks and do what We think is best for US. Make choices that you know you can live with the consequence of ...
0 -
Changing the medication is very helpful to most of us. I was in letrozole for over 2 years and SE were getting worst by the day. It was like a poison, drop-drop every day and my body and mind couldn't take it anymore. I turned yellowish even though the liver tests were fine. I finally told my MO in February and he gave me a break for 6 weeks and started on Aromasin. What a big difference! It is been 5 months in Aromasin and I feel so much better.
For us users of AI, we have 3 options: letrozole, anastrozole and aromasin (exemestane). While the first 2 are the same family, Aromasin works differently and can be a better replacement if letrozole or anastrozole doesn't work for you. My MO told me I needed a break for 6 weeks for the body to clear letrozole SE and reset before going to the next medication.
On the other hand, we need to be realistic that these anti-cancer medications are strong and have SE but hopefully, they are keeping cancer under control. I imagine that removing our most important hormone, estrogen, is not easy in our bodies.
Dani44, I can see that you have ILC like me. I thought tamoxifen is not the best for ILC.
0
