Tamoxifen withdrawal

[kearnan]

After 3 and 1/2 years of good run with 2 50 mg. of verzenio daily and one monthly falsodex injections. That kept me for three and a half years. I stopped taking the 150 mg. and then the 100 when I continued to have severe diarrhea. So i was right that alot less did the same trick and I felt normal

Well, now it has spread to my liver and in the 90 days before my ct scan (in which she never took me off the Verzenio and falsodex injections, the liver tumors increased significantly.

So last Tuesday, I had another CT, on Thursday I met with her and the cancer in my liver was still spreading. She told me to stop taking the tamoxifen (20 mg. and afinitor) that I had been on for two full months. both were taken daily

I was waiting for the new drug to come from the speciality pharmacy so still waiting. WIthin the past three days, I started having chest pain and thought it seems like really bad acid reflux or maybe I slept on my hands.

Today I woke up (less than a week after stopping the tamoxifen and afinitor, I woke up at 8:30 am in a panic. I had such severe chest pain that I felt like an elephant was sitting one me and my one leg was in such pain. I had no clue they could be related.

I live alone and was scared. But I thought I was going to have a major heart attack. I was besides myself and then it calmed down a bit. Out of the blue not even considering it, I googled tamixofen withdrawal and when a person suddenly stops it, one of the withdrawal effects is SEVERE CHEST PAIN and some others also experience leg pain.

I was shocked. How did she not know this? Why did she not warn me. I am livid and angry bc I came close to calling am ambulance for myself thinking this was different from my cancer.

HAS ANYONE BEEN TOLD TO STOP TAMIFOXEN AND FELT SEVERE CHEST PAIN? How could she not know this. I am livid and going to giver hell tomorrow.

Please, she is calling me at noon (EST). If anybody else has suffered with withdrawal effect and has anyone else's doctor prescribed them something to help withdrawals. As has any one your doctors gave you some other kind of drug to help with the withdrawals. I am at the end of my rope with her. I want to be able to show her (I have the medication question and answer) but would like to know if any of you had withdrawal of severe chest pains when told to stop. Or did you doctor prescribe something else in case you got severe chest pain.

Please bc I want to show her facts. Plus what is the name of the trial drug I seen some mention enhdmu (something like that).

Any information would be greatly appreciated bc I am really upset by my fear of having a heart attack and the pain in my leg. I did not even connect the dots until it hit to google and sure enough they are withdrawal syndromes.

I will be reading this as early as 8 am (EST) bc I want to show her that others have suffered with these effects and some have been prescribed medication to wean the withdrawal. I want to be able to present information to her. I am really beyond angry.

Thank you.

[mariootsi]

I don't blame you for being so upset! I would be too. Let us know what she says.

[kearnan in reply to mariootsi]

I meant to type ( and I need to edit it) but SUDDEN chest pain. I had it two days straight (and I stopped the tamoxifen and the first two times it was sudden and sharp and I thought possibly acid reflux but then the other morning, it hurt so bad and it started the minute I got up., I did not even link it to meds, and then realized if you take opiates, xanax, ambien, every day for two months, you are going to suffer withdrawal.

She said she never heard of that. I said I just googled it, and it came up. Obviously, you are unaware of it, but I am letting you know bc I almost was calling to call an ambulance for myself and you should know this going forward. I said just google it.

She said I should also get myself checked from my primary. My onco does not like know that I am four years into this, that I question things she says that I know are not true.

[8576]

I have not had this experience and have never heard of this before. I have been off and on Tamoxifen with different drugs. Just as an aside, you can do just as well on 5mgs. Tamoxifen as u can on 20. Maybe that is the answer. Don't be so sure you are right until you hear what she has to say.

Cheers, June S.

[kearnan in reply to 8576]

Well I was on the 20 mg. lf tax and also an afinitor and after bloodwork, she kind of new it was not working. I said I do not want to spend another month (when my 3 mo. scan was due) if I am taking meds that are not working and the cancer is spreading.

Sure, enough she made the scan five weeks early and about a week and a half ago, not only did the tumors double in size, and fairly huge, but two new ones have started. So going to a lower dose was not the answer.

She took me of that immediately (told me not to tape it, thus the "withdrawal syndrome") and I am waiting for the Xeloda to arrive 8 pills a day, 4 pills twice a day at 500 mg. each). I am so so dreading this bc I read the side effects. You get used to a certain way of being able to get through from day to day and then boom.

She has me on a week on and a week off. I am already depressed about this. But these are hard med drugs. I can't imagine that nobody suffers from any withdrawal when just told to stop. It would have been interesting if I went to the hospital that she works for their cancer center to find out it was bc drug withdrawal.

[KMBL_]

I’m sorry that happened to you. Enhurtu, I believe is the drug you may be asking about. It’s just been approved for HER2 low, which I am. I’m considered HER2-, but it was 1+.

[kearnan in reply to KMBL_]

I am done. After starting the Xeloda today (8 pills, 500 mg. each twice per day). OMG. I could not take the first dose until noon bc I never eat for a few hours since cancer and the other drugs I were on it didn't matter if you took them with or without food.

I took 4 of them at noon (after forcing myself to eat a bowl of cheerios). Took about two and half hours and I was completely fatigued and just laid in bed, my arm and legs muscles are hurting so badly and I feel so sick. That is only 1/2 of my first dose.

This would be my fourth line of treatment, With the other drugs, I never felt fatigued, I was able to go for walks, clean, do laundry, just some nausea. No, I do not want to extend my life for another year if it involves laying in bed because of fatigue, the diarrhea (which already started today) and the overall sick feeling. I am not taking the second dose.

She said without treatment probably 4-6 months. I want to enjoy the end of my days. Doesn't make sense for me to possibly extend my life a few months but feeling like this and from what I read, one does not get used to it. It is cumulative and gets worse.

The time from I stopped the last treatment and waited for the Xeloda to arrive (a slight delay) so for 8 days, although I was still on pain medication, I was on no type of chemo meds and I forgot how great it felt.

I am not doing this. I do not have children, siblings, parents or anyone that depends on me. I just want to enjoy what time I have left feeling as normal as I can.

[KMBL_ in reply to kearnan]

I replied to your other post to me as well, but I can totally understand where you’re coming from. I hope you feel better tomorrow.

[Hidden]

Yes Enhertu is the drug that was recently approved for HER2 low which includes 1+ or 2+. According to the FDA you must have had a prior chemo. But that does include xeloda. Hope that helps!

Mandy

[kearnan in reply to Hidden]

I am waiting for my Xeloda to arrive. 8 pills a day at 400 mg. One week on, one week off. I am already dreading the fatigue that I have read about. I have not had that for a while so the thought of going back to how bad I felt on Ibrance on my week off, I am thinking this is not going to do anything for me but cause alot of side effects.

She had told me that was my last option. I then emailed her saying I was going to go for a second opinion. Within seconds, I get an email from her that she will have her asst. set up a telephone consult with me to discuss other options.

She never in four years did this. She then said Well, once you said you were going for a second opinion, I did not want this doctor to think I told you that there were no other options.

She said I am sorry if the way I said it was misinterpreted. I said no, there was no misinterpretation, that is exactly what you did say to me.

She called me only bc she feared another doctor's opinion of what she said to.

[Hidden in reply to kearnan]

Sounds like you need a new oncologist or at the very least a true second opinion! That does sound like a high dose. Give it a go! You can always reduce it.

I will be starting the highest dose kisqali in replace of ibrance. My markers have shot up over the last few months. But, I’m trying to hold on to first line meds (letrezole with cdk inhibitor) for as long as possible.

Fingers crossed for both of us!

I know it’s hard but try to go into it with a little positivity!

❤️Mandy