Does anyone else in the community take Tamoxifin?

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I was tested a couple of years ago for the BRCA gene (linked to breast cancer). I tested positive for the BRCA2 gene and have been on Tamoxifin for that same length of time. I am becoming so dicouraged because I am constantly bloated and have also put on a few pounds that I cannot seem to lose.
I walk at least 6 days a week in the morning approx. 2miles then again in the evenings approx. 2-5 miles. I stagger the walks with jogging. I eat very healthy, limit alcohol, and drink a ton of water. I am so discouraged. Since February I have gained and lost the same 2 pounds. However, my fiance, on the other hand has been doing the same exercise, and eating the same type of food that I am and has lost 14 pounds in this amount of time. I started to get really down about it so I went off my meds for a week just to see. I lost four punds immediately. My fiance found out about me going off my meds and encouraged to go back on it. By day two of being back on I gained all four pounds back.
I am so discouraged. I talked to my doctor and this is the only med that is available right now for me to take and so I am stuck with it.
Is anyone else out there going through the same thing? What have you done or are you doing to combat the weight and bloat?

Replies

  • dinaanne
    dinaanne Posts: 34
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    I was tested a couple of years ago for the BRCA gene (linked to breast cancer). I tested positive for the BRCA2 gene and have been on Tamoxifin for that same length of time. I am becoming so dicouraged because I am constantly bloated and have also put on a few pounds that I cannot seem to lose.
    I walk at least 6 days a week in the morning approx. 2miles then again in the evenings approx. 2-5 miles. I stagger the walks with jogging. I eat very healthy, limit alcohol, and drink a ton of water. I am so discouraged. Since February I have gained and lost the same 2 pounds. However, my fiance, on the other hand has been doing the same exercise, and eating the same type of food that I am and has lost 14 pounds in this amount of time. I started to get really down about it so I went off my meds for a week just to see. I lost four punds immediately. My fiance found out about me going off my meds and encouraged to go back on it. By day two of being back on I gained all four pounds back.
    I am so discouraged. I talked to my doctor and this is the only med that is available right now for me to take and so I am stuck with it.
    Is anyone else out there going through the same thing? What have you done or are you doing to combat the weight and bloat?
  • keiko
    keiko Posts: 2,919 Member
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    I'm bumping this up in hopes that someone who is taking it sees this post and you can connect with them.
  • mzaccardi
    mzaccardi Posts: 29 Member
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    I feel your pain! I have been on Tamoxifin for 4 years. I have one more year to go and then I'm done. Four years ago they found a lump in my breast which turned out to be non-cancerous, but when they biopsy the area the found LCIS (cells that have the tendency to become cancerous) so I was put on tamoxifin for a five year run. (are you on for the same amount of time?) Your story parallels mine. I have not been able to loose weight and when I do, it's the same 10 pounds every time. When I asked my doctor about the side effects of tamoxifin, the biggest was weight gain. The fact that I have stayed the same weight is do to the diet and work outs. I try and eat healthy and walk 6 six days a week and strength training every other day. I look forward to when I am off the pills and hopefully my weight will start to come off. Everyone I have talked to has shared the same story and some have gained has much as 30-50 pounds! The bottom line is cancer vs. overweight. I decided (and I thought and prayed long and hard over the decision because I am also diabetic) to take care of the LCIS first and then the weight. My Oncologist basically said be happy that you are not gaining and just maintaining. SO if there is one silver lining to this is that I am maintaining and not gaining. Stay on the meds, I know it may not be what you want to hear, but stay on the meds. I've lost family members to breast cancer and lymphoma, I'm watching another sister in the Lord fight the battle with breast cancer. Lord willing, I will not travel the same road and neither will you.
  • jbrascia
    jbrascia Posts: 16
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    What kind of medication is that and is it really necessary????
  • mzaccardi
    mzaccardi Posts: 29 Member
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    For me, I made the decision that it was necessary for my health. I know some women who have elected not to go on it because of the side effects.

    This is from the Web MD site:

    Tamoxifen is prescribed for different reasons, including the following:

    treatment of advanced, early stage, and invasive breast cancer following surgery and/or radiation
    prevention and treatment of cancers that test positive for estrogen receptors (ER+)
    prevention and treatment of cancer in one breast to reduce the risk of cancer in the second breast
    prevention of invasive breast cancer in women at high risk
    treatment of ductal carcinoma in situ (DCIS) following surgery and radiation
    prevention of osteoporosis fractures in some postmenopausal women
    stimulation of ovulation
  • jojo52610
    jojo52610 Posts: 692 Member
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    Me I was on it for 2 years after Breast Cancer - they just switched me to AROMASIN a few months ago - between the Chemo and the Tamoxifin I now have have to take Boniva for bone loss.

    the side effects with the hot flashes were rough but the Aromasin is just as bad, I have gained weight and really didn't associate it with the Tamoxifin until you just mentioned it.

    I have not been this heavy since I had my first child - I did gain some weight (12lbs) while I was getting Chemo - which I was thought was due to the steriods - but my weight has been creeping up . I would go to the gym - every day and even hired a personal trainer - and lost 17lbs - but as soon as I stopped training it went right back on.


    I am struggling trying to loose weight no matter how much I excercise and watch what I east - I can barely loose a few pounds .

    But by far I think for me the benefit of these drugs way overweigh the alternative - I was lucky I had Stage 1 Cancer - I had a lumpectomy - Chemo and Radiation -my tumor tested positive for estrogen receptors (ER+) and it's been a little over 2 years and I'm still in remission -
  • mzaccardi
    mzaccardi Posts: 29 Member
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    :flowerforyou: jojo congrats on being in remission!

    I forgot about the hot flashes!

    I am really struggling to loose weight as well, I just look forward to the day I am done with this medication.
  • chrissyh
    chrissyh Posts: 8,235 Member
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    Tamoxifen - I have to pick up a refill today!

    I've been on it for almost 3 years - 2 more to go then I'll take Arimidex (sp?) for 5 more....my cancer was ER+, stage 1, bi-lateral mastectomy, chemo, and I've also had reconstruction. I was 34 when I was diagnosed.

    My side effects: mood swings, being tired all the time, weight gain, joint aches, night sweats...no menopause yet - we'll see....

    You can loose weight while on it - I am....it's not easy-you really need to set your mind to do it...I've noticed since I've lost weight that the night sweats are really the only side effects that are noticable.

    I had lost 47 pounds right before being diagnosed, lost 3 more pounds after mastectomy which at the time was my goal - bitter sweet after what I'd been thru - once chemo started, I started gaining and kept gaining up to 239 pounds - I've now lost 60 of that so I am feeling really good about my health!

    We are survivors ladies and we have fought the battle for our lives now we're fighting the battle of our lives....we will conquer our weight as we conquered cancer!
  • chrissyh
    chrissyh Posts: 8,235 Member
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    What kind of medication is that and is it really necessary????

    It blocks estrogen

    I feel like benefits far out weight the side effects and risks
  • chrissyh
    chrissyh Posts: 8,235 Member
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    :flowerforyou:
  • MJA1970
    MJA1970 Posts: 32
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    I have been taking Tamoxifen since August '07. I was diagnosed with stage 2 breast cancer Oct., '06. I have definitely noticed a change in my weight, as far as not being able to drop it as easily as I did before (but I am also 38...so age may have something to do with it too) ;-) In the meantime, I won't complain too much. I am thankful that this drug is available, and if it means that I will hang on to an extra 10 lbs. for as long as I take it, then so be it. I'll just have to work a little harder to try and drop the weight...I'm not giving up!
  • chrissyh
    chrissyh Posts: 8,235 Member
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    Do you think with all the drugs we took to get rid of cancer - chemo, pain killers, radiation, etc that we now have super powers????

    I think so - we fought the biggest battle of our lives and we are SURVIVORS!!!!
  • MyAngelAndMe2
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    Do you think with all the drugs we took to get rid of cancer - chemo, pain killers, radiation, etc that we now have super powers????

    I think so - we fought the biggest battle of our lives and we are SURVIVORS!!!!




    :heart: that sums it up :heart: