Has anyone taken Lupron for IDC?

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Mcs05
Mcs05 Member Posts: 3
edited June 2014 in IDC (Invasive Ductal Carcinoma)

In July of 2008 I was dx with stage 3 IDC. Partial mastectomy, 5/19 lymph nodes positive. HER+.  I did AC chemo, Taxol Chem, Radiation, 1 yr Herceptin and then 2 yrs (monthly shots) 7.5mg Lupron.

I am 50 yrs old and feel like 90 yrs.  I have bone/body pain, numbness in my feet and hands (maybe from Taxol), fatigue, and major chemo brain.  I'm not sure if anybody else has taken Lupron for breast cancer.  I've looked at may sites to find out how long I will be feeling these horrible SE, however I cannot find anything other than people taking Lupron for Prostate cancer and or endometreosis.  I used to be a very active person full of energy.  Now I find it difficult to get out of bed.  I am totaly disabled.  Does anyone else feel like this??? 

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited March 2013

    I'm on Lupron for stage 3 IDC but I've only had one shot so far. I have minor hot flashes but I was having them before dx. My doctor has scheduled the shots for every three months. But I'm thinking about having an oophrectomy. If I do, I will not need Lupron.

    Are you also on Tamoxifen or an AI? I know Tamoxifen can cause bone/body pain. And believe it or not, you want it to. Women who have hot flashes and joint pain on Tamoxifen have fewer recurrences than women who don't. I wish I had bone/body pain but I don't and it's freaking me out!

    I'm so sorry you feel bad. I really believe you need to force yourself to get out of bed and move around as much as you can. After chemo I started by going up and down a flight of stairs in my home and worked my way up from there. It took time and effort. And consider an ooph. It's one less substance you have to put in your body.

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  • Mcs05
    Mcs05 Member Posts: 3
    edited April 2012

    Posy1, thank you  for your post.  I tried to take Tamoxifen for 3 months but I was experiend nightly leg cramps, so my doc took me off the Tamoxifen and started with the monthly Lupron shots.  I try to move as much as possible, however the pain is unbelieveable. I worked (8 -10 hrs daily) thru all my chemos and thru my radiation. I started feeling bad around my 3rd or 4th Lupron shot.  I finally finsihed all 24 Lupron shots in Dec.2011 and I am trying accupuncture for the evil SE.  

    Please don't freak out.  Everyone's body is different. Just because you don't feel the SE of the Tamoxifen doesn't mean it's not working. Consider yourself lucky! Please continue all your treatment. I know that I am not happy with all the horrible SE of all the drugs I had to take, but I am happy to be alive!

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited April 2012

    Hi

    I have lupron shots once a month..... have had them since summer of 2009--so it is 3 years.... overall, they have been fine.... but I am getting ready to go off.... I would like to get off this summer if at all possible.... I thought about ooph--but I really did not want to have surgery and no one thought I needed my ovaries out..... I am on femara...which, at first, made me stiff--- and it was hard to move around-but since I exercise regularly, I have found that has all resolved over the past 3 years-- -very little of it now-- you just really have to keep moving all the time--the only time I am in one place and still is when i sleep!!!!

    since you have had some of the se's since your treatment, have you talked to your onc?  maybe go off tamoxifen and onto an AI and lupron to change it up????

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  • Sukiann
    Sukiann Member Posts: 310
    edited April 2012

    I have Lupron shots every three months. In fact I'm going in tomorrow. I've also thought about having my ovaries out but I just don't want to go through another operation. This july it will be three years with the lupron and arimidex. I'm 47 and premenopausal, I went the lupron/arimidex route because tamoxifen has a higher risk of blood clots and I am at risk for them.



    At first I was very stiff but that could have been from the arimidex as well as the lupron. The aches have subsided. Maybe because my body got used to the mess or maybe because I take tumeric which I really do think helps. I also think that the lupron has caused weight gain. That's a whole other story! I really don't want to get weighed in tomorrow. It's very depressing for me since I've gained 20 lbs since treatment and I can't seem to lose it. :(

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  • Mcs05
    Mcs05 Member Posts: 3
    edited April 2012

    Hi Sukiann,  so sorry for your ordeal.  Did you have any chemo or radiation?  

    I too have gained 40 lbs and have tried to loose it by altering my diet and trying to be more active but I have had no luck. I only gained the weight after the Lupron shots started. I understand how you feel. Maybe it will go away in time.....(wishful thinking!).

    You said that you are taking tumeric. Is that the spice tumeric?  How do you take it?  At this point I'm willing to try anything for the pain/stiffness. 

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