Femara to Tamoxifen ???

toninasky
toninasky Member Posts: 102
edited March 2014 in Breast Cancer #1
Well the oncologist agrees, no more Femara. The joint pain in my hands is horrid, and I have had to have a doppler on legs. Waiting for those results.
He does want me to do Tamoxifen, but I am truly not sure I want to go that route either. UTERINE CANCER AS A SIDE EFFECT !! I am 65 and want a quality life for whatever time I have. I keep thinking about the years that these drugs were not available and people did survive. I am truly frightened of the s effects. I would like to hear good and bad re this drug, before I make a decision. I would appreciate hearing from anyone who has taken it successfully and those who were not so successful as far a side effects.
Blessings and thank to all.

Comments

  • iammomof3
    iammomof3 Member Posts: 4
    I am so glad to hear that you are off the Femara. I took if for 4 months and that drug was so painful! It is good that you are researching Tamoxifen before you make a decision. Its your body and you have the right to decide what to take or not take. Too many doctors forget that sometimes.

    My oncologist would not put me on Tamoxifen after I stopped Femara because the cancer had already spread into my spine. She said tamoxifen would not work for me at this stage.

    Because I have never taken Tamoxifen, I can't really answer your question personally about its side effects. But I completely understand your concerns about quality of life - especially after coming off of Femara - so I wanted to write and offer some support.

    Sending prayers and healing thoughts your way, "to nina sky." I don't know if that's how you say your name or not but its lovely :) Be well
  • newboobs
    newboobs Member Posts: 121
    iammomof3 said:

    I am so glad to hear that you are off the Femara. I took if for 4 months and that drug was so painful! It is good that you are researching Tamoxifen before you make a decision. Its your body and you have the right to decide what to take or not take. Too many doctors forget that sometimes.

    My oncologist would not put me on Tamoxifen after I stopped Femara because the cancer had already spread into my spine. She said tamoxifen would not work for me at this stage.

    Because I have never taken Tamoxifen, I can't really answer your question personally about its side effects. But I completely understand your concerns about quality of life - especially after coming off of Femara - so I wanted to write and offer some support.

    Sending prayers and healing thoughts your way, "to nina sky." I don't know if that's how you say your name or not but its lovely :) Be well

    I finished my 5 yrs of TAM this past March. I was 38 when dx'd and started the TAM right after I finished chemo. It did make me ache the first several months, but that eased over time. I dealt with some fatigue, but I learned to listen to my body and rested when I needed to. Avoiding fatty and sugary foods and exercising REALLY helped with the aching and tiredness. Overall, it wasn't that bad. Bec. I was premenopausal, I took every dose of it. When I finished the TAM, my energy sprung back within a month. It's great! I'm now 44 and trying to have my first baby.

    Do your research, talk to your doc, and follow your heart. I'm glad I took it - I know that I've done all I could to remain cancer free. But it is truly a decision only you can make.

    You'll be in my prayers

    Karen
  • cruf
    cruf Member Posts: 908
    Hi! I was on the Tamoxifen for the full 5 years. I was 48 when I started it. I can honestly say, I really had minimal difficulties on it. I did go into immediate Menapause so got the hot flashes and some vaginal discharge but totally managable. I have internal ultrasound every 6 mos. to watch for any abnormal uterine changes. Then, after the 5 years, I went to Femara and immediately had joint pain etc... After 8 mos, switched to Aromasinfor 1.5 years and those joint pains along with wt. gain, hot flashes(worse than Tamoxifen), dry eyes, hair loss , high cholesterol ,etc..continued. I'm now off all meds for 1 1/2 mos,(7 years post surgery) and I'm waiting for all those side effects to lessen.So, what I'm getting to is that I found Tamoxifen pretty benign and would do it again if I had to. As long as you are vigilent in check ups, if anything in the uterus were to develop, they could catch it early. It's your decision and you will make the best decision for you. Good luck with whatever you chose. Let us know how you are doing. Feel free to e-mail me here if you have any questions. HUGS!! Cathy
  • KathiM
    KathiM Member Posts: 8,028 Member
    Toni,

    You probably already know my story...but just in case....

    I had a total hyster as part of my rectal cancer treatment. So, I was eligible for Femara/Arimidex.
    BUT my DEXA scan showed deep osteoporosis (-2.7T). Since These guys CAUSE bone loss, my onc and I decided on Tamoxifen instead...it can increase bone density, and Actonel, for 2 years. I have an occasional hot flash (1.5 years on it now...), altho at the beginning, the flashes were pretty frequent. Other than that, well, I tolerate it well...no joint pain, neuropathy, anything...

    I keep myself well hydrated, always.

    Uterine cancer can happen...but you just need to be vigilant about keeping CT scans, etc in your life....

    Hugs, Kathi

    PS. I know some BC survivors that don't take anything, and are NED, and some that take this stuff and have a reoccurance on it....even the aromatase inhibitors like Femara...Any of these are designed to REDUCE the risk of reoccorance...they don't ELIMINATE it...sadly....
  • phoenixrising
    phoenixrising Member Posts: 1,508
    I know exactly how you feel. I didn't want Tamoxifen either. Imagine that, taking a listed carcinogen for cancer. But it's true
    and even the chemo is a carcinogen and can cause leukemia.
    I hated it all! I wanted the aromatase inhibitors but my bone scan gave me another surprise.....osteo. So I had to take the tamoxifen. I've been on it since May and have had some heavy duty hot flashes, (I am post menopausal) some abdominal cramping (felt like I was going to start my period) and insomnia. That's about all I can blame the TAM for and they all come and go in waves. Here for a while, gone for awhile. One of my biggest fears about TAM is resistance. Becoming Tamoxifen resistant where it turns around and actually starts feeding a tumour. That scared me. But I keep going over the numbers and there definitely are alot more women who have used it successfully then those not. Unfortunately my mother-in-law (my best friend) died from breast cancer and the tamoxifen didn't help her even though she was early stage and initially the prognosis looked good. This weighs heavily on me as I find myself following in her footsteps.

    I did however ask my doctor for an endometrial ultrasound to measure the thickness of the endometrium for future reference and will have another one in a year. My cholesterol and other blood work were also checked.

    Quality of life was high on my list of priorities when I first discovered this cancer. Every move we make puts that at risk.
    I tried to protect my left arm (mastectomy side) by not letting them take out ALL the lymph nodes and gave them the sentinels only. It's fine but the right arm is buggered due to the destruction of the vein from the anthracycline. It's hard as rock.

    Guess what I'm saying is that every step of the way puts our quality of life at risk. Surgery, chemo, rads, hormone therapy.
    Sometimes I think "what's going to be is going to be" and the more I try to avoid something, the more likely it is that I will experience it.
    Like I tried to avoid cancer and osteo. Other times I think I can actually control the situation.........ha.....what a joke!!

    At any rate I do understand the difficulty in this decision and hope you are able to be comfortable with whatever decision you make.

    Best
    jan
  • toninasky
    toninasky Member Posts: 102
    Just to say thanks to everyone for your responses so far. I am really pretty sure of what I will decide, but I am still listening and praying for the right decision.
    Blessings and love to all
    Toni