Quitting Tamoxifen

dbhadra said:

I need to do more research
I;ve been feeling very anxious about these decisions that I will need to make after surgery and rads. Just today I was talking with my therapist about needing to do more research for myself on side effects vs effectiveness of tamoxifin, AI drugs, ovary removal, etc.

I;m sorry to hear some of you are having side effects, at the same time I am glad to read everyone;s comments here, since it helps me to know I am not the only one struggling with these issues. Since my dx in Dec the amount of new information about cancer and cancer fighting drugs that I have gotten is just amazing - definitely much more than I EVER wanted to know. As tjohn son said, sometimes it feels like we are damned if we do and damned if we don't. It's all about the tradeoffs, I guess.

For some reason I was not as afraid of the chemo as I am of the drugs that I would take afterwards. I am trying to remind myself that I am lucky that I am 100 ER+ so that I do have the option to take drugs to reduce my risk. But I am still very afraid of the side effects. Maybe it is just the cumulative anxiety about everything that is getting to me.

Laura

Different Ballgame said:

Difficult Decisions
Dear Kelly,

Anything we do connected with the cancer and the prevention of cancer carries a consequence. What do I value? I value quality of life. I value the right to make a decision, even though it may not be the popular decision or the "right" decision.

There are many women who have no side effects to Arimidex, Fermara, or Tamoxifen, but then there are women who do have side effects to these drugs.

No one can relate to the intensity of those side effects unless they have experienced them. We are all different and we all react in varying degrees.

I had side effects to Arimidex, then Anastrozole, and finally Femara. After being on Arimidex for 6 months, the side effects exploded. Anastrozole's side effects waited one month, and then appeared. Femara's side effects took 2 weeks to appear. From my experience, it takes more than one month for the drug to leave the body. In my case, it is many, many, many months. I am curious to see what my body will feel like after being off the drugs for one year.

I am 70 years old, basically in excellent health, and debated 2 months on whether I wanted to take Tamoxifen. One day I said, "yes" and then the next day I said, "no". I was a yo-yo. My final decision, for me, was NO after discussing it with my hematology oncologist. She will continue to test my blood every 3 months and examine me every 3 months. My surgeon will see me twice a year as opposed to once a year. My radiation oncologist sees me twice a year.

I feel I am fairly well covered for body examinations. I am also pursuing other holistic methods.

Kelly, do not have fear in your body...that is a negative. Decide for yourself what is best for you. Be positive. Positive is powerful.

Lots and Lots and Lots of Hugs,
Janelle

cahjah75 said:

Kelly
it is difficult to know what's best. I was depressed going through perimenopause and gained 80+ lbs over a couple of years. At 5' tall I was dealing with the weight, sadness and menopause issues all at once. Recently my gyn tried my on a few different anti depressants to help with the hot flashes but nothing did so I'm not using anything. I suffer through them. Only you know how you're feeling on or off the drugs.
{{hugs}} Char

I have been on Tamoxifen for just about the 5 years they told me I would be on it.  Was also on Taxeltere, and my hair didnt come back like everyone else's did.  I was hoping that after I stop Tamoxifen it would come back.  I dont see much hope on any website.  I have been wearing a wig since my hair fell out in 2007.  I get terrible hot flashes day and night and the wig doesnt help any.  I used to like the warmth but I hate it now.

My hair did almost the same thing. I had longish hair and it started coming out. My husband said it looked like Sasquatch was in the shower after me. It would just come out in clumps. I couldn't believe how much it affected me. It was horrible! Finally, I just went and got it cut really short. I have since let it grow out again and although it's not as long yet I am not losing it anymore.

I looked on line to see if this was a side effect and it did say thinning of hair, but who knows? Never said anything to my Dr. he thinks it is very important to take the medicine and I know he wouldn't take me off it. Hope this makes you feel less alone in this battle.

Hello!

I was recently diagnosed with stage 1 breast cancer.  I have had a lumpectomy and I will begin radiation soon.  I am trying to decide if Tomoxafen is worth the side effects, or if there is another medication suitable for someone that is pre-menopausal.   I have already had mood swings, depression, and weight gain as I go through menopause, so I am nervous about the side effect Tomoxofen would bring.  I am honestly considering not taking anything, but of course that is scary too.  I would appreciate any suggestions!

Clementine_P said:

Why not give it a try

A lot of women suffer no side effects at all from Tamoxifen.  I had stiff joints for a couple of months but once that settled down had no discernable side effects.  I've been on it for 6 1/2 years now.  You can start it and stop it if you suffer disabilitating side effects. 

Clementine

Clementine,

Thank you so much for your response!  I am considering taking the medication on a trial basis.  I have one of the greatest jobs anybody can have (first grade teacher) but emotional stability, patience, and high energy are job requirements.  From all that I have read, Tomoxifin takes a big hit in these areas.  I have also been told by the Medical Oncologist that many women take Effexor to help with these side effects.    I just wonder if the benifit outweighs the cost.  My genetic testing suggested a very low chance of recurrance (Luminal Type A).  I am really wondering if a 3.3% benifit is worth the possible side effects, and possible second medication.

lintx said:

I agree with Clementine

I will be at my 5 yr point, taking Tamoxifen in September. I recently had my onco annual, and she said I can discontinue the med or stay on for 10 yrs. I'm not sure yet, but I've had no side effects. I suggest trying it.  Believe me when I say I was terrified to swallow that first pill.  Now I'm afraid to stop! Go figure. Linda

Same here. My appointment was in March and the doctor told me to take it another five years. I've decided to do it. I no longer have side effects, and I probably wouldn't lose much weight anyway since I'm 51 now. I keep my weight down with exercise, so I don't think I'd see a big change. I figure I've got nothing to lose staying on the drug. OOOXXXX Anna