One more time - To Pill? Or not to Pill?

MarcieB

In Dec, my doctor advised changing my anastrozole to Tamoxifen because I cannot handle the bone meds one has to take with aromatase inhibitors. She said, I had a *complete response* to my chemo so I would be a good candidate to take this drug. I decided to switch, but first I took a pill vacation for over a month. I can't begin to tell you how good I felt to be off the anastrozole! Reluctantly I have been taking Tamoxifen for the last three weeks and my insomnia, leg pain, and acid reflux is back. I also have the lovely addition of a slight discharge with a slight odor (which is driving me bats!) I awake at night and worry about blood clots, uterine cancer...brain fog. I really want to say forget it to the whole pill follow-up thing, but that would worry my husband and I hate to do that. He lost his first wife to breast cancer, so this is hard enough for him.

Please - everyone, tell me what you are doing? What is working for you? I very much need your input.

2943

My docs mentioned low levels after biopsy and all the additional tests, that I was borderline for need to take. I did take aromatase for a year and ended up with shin splint linke neuropathy. A secon opinion gave me peace of mind to stop. Good luck. Second opinion is a good thing. Hugs

MelanieIIB

I struggled with whether or not to take Tamoxifen. This was about 8 years ago. I decided to take it and did for about 2 years. Then tried Letrozole for about 9 months and decided to stop it too. I did not like how I felt on the drugs either; leg cramps, heartburn, joint pain (which I was later diagnosed with Rheumatoid Arthritis (which I truly believe some of the drugs I took for cancer activated it).

You are the one who has to deal with the side effects; no one else. I understand your husband not wanting you to come off the drug for fear your cancer will return. My husband was the same and was not happy I stopped the drug. There are no guarantees that cancer won’t return, even with you taking the drug. I am at a place where I am at peace, fully trusting Christ for forgiveness of my sins and trusting Him with my future.

You have to weigh benefit vrs. risk for you. (I had infiltrating lobular carcinoma, stage IIB, sentinel node positive for cancer, HER2 positive, ER positive, axillary dissection removing 17 lymph nodes; I have lymphedema because of the removal of all those lymph nodes.)

suemartin

My doctor also switched me from arimidex to Tamoxifen. The only side effect I saw was the discharge, I ate some yogurt every morning and it really helped!!

Dltmoll

I also tried all three AIs before switching to tamoxifen. For me the difference was night and day. I have had a couple of instances of uterine thickening, which has meant one d&c and ultrasounds every six months. But for me it's worth it, since mine was a stage 2 type 3 tumor. When I made the switch my breast surgeon agreed with the oncologist, saying that my quality of life was just as important a consideration as anything else. I agree.

MarcieB

I so appreciate hearing these experiences! I have heard there are tests you can take to determine your risk factor, but I keep forgetting to ask my doctor about them? Are they blood tests? Overall I do like Tamoxifen better that the AI. I didn't realize how much it affected my joints until one day, about three weeks without it, I RAN up the stairs without even noticing until I got to the top of the stair and realized what I did. I just don't feel good about taking anything.

2943

The test I had was run off the tumor. Many times they still have samples and can still run them. Your doctor should have and may have done them. There is so much that comes at us so fast in the early stages of this and a whole new dictionary of terms. I forgot all about it until I was having such a hard time and brought it up to oncologist. He said I was in low risk category and I said that is it, I am done. 6 years ago. Hugs!

Bengal

After chemo/radiation I was put on anastrozole. I was supposed to be on it for TEN YEARS!. I stayed with it for a little over a year but just couldn't accept the idea of living with side effects for another 9 years of my life. I was miserable with bone and joint pain, fatigue and just a general feeling of malaise. My oncologist tried me on letroszole but side effects were similar so we tried exmenestane. I had a frightening allergic reaction after 1 pill so was done with that! Dr wanted to go to tamoxifen. After learning this pharmaceutical could trigger endometrial cancer I said "No way" ! Having been through the ordeal of treatment for breast cancer why would I take any chance with a drug that might give me an even more horrible cancer. I was done. No more drugs. It is nerve racking but at least I am not sick all the time. Just had my 5 year follow-up and (fingers always crossed) all is well.

2943

Bengal… such a similar story. Tried all three aromatase. Then asked about risk test then threw in towel. I advocate feeling like you are the captain of this team ( and you are) and asking questions, getting answers, second opinions, etc. I went to a top 10 national medical facility for my second opinion and stayed. Took advantage of clinical trials, being prepared for appointments by having a typed list of questions and on. You just had to go for it. Hang in there!!!

MarcieB

It's the malaise that is getting to me the most right now. When I was taking nothing I was always in a cheerful mood and I felt enthusiastic about everything. Now I am in a dark place? What is this? Has anyone else on Tamoxifen noticed a brain foggy moodiness? Or maybe I am just going through winter doldrums.

MelanieIIB

MarcieB, Yes, I have definitely experienced mood changes and brain fogginess while on Tamoxifen, and other drugs for that matter. I would tell your doctor and she what he/she says. It could be that you have to give the drug a certain amount of time to be in your system to see if this side effect goes away.

Bengal

That's what I was told about anastrozo!e. Just give my body time to adjust to it. What I got instead was that I just felt worse and worse as time passed. After a year I bailed. It's a tough decision to make. I agonized over it but chose "quality of life" in the present over a possible slight decrease in my chances for recurrence at some unknown point in an unknown future. You should talk to your doctor and your husband but the decision it ultimately yours..

Ashera

Hi Marcie!
I'm one of 'those' that Nike'd it. Just said NO. I researched to death - both Tamoxifen and the aromatese i's...and the promise of the various side effects that would come with both...the added 'percentage' of protection vs taking my chances - didn't tip the scales.
I'm six yrs out, have my chemo-related issues - but feel good without the added promises of these two classes of drugs thrown in to the mix.
It's the being in the middle...the what-iffing...that drove me crazy. Once I made the decision, had my onco's blessing with my decision - have never looked back.
Remember, IF it's going to come back - it will with or without benefit of Tamoxifen. They 'think' that these drugs lower the risks but there's no proof. They come with known side-effects. You have to choose. For me - I leaned heavily into the quality of my life.
Warmly, Pam