weight loss instead of hormone blockers.

Pamela48
Pamela48 Member Posts: 9
edited February 2020 in Stage IV/Metastatic Breast Cancer ONLY

has anyone tried weight loss and was able to successfully off hormone blockers for MBC her positive

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2019

    I think if someone does this, they are not going to have their oncologist's approval. I say that because studies are only now being done on whether or not weight loss AFTER diagnosis helps breast cancer patients whether Stage IV or earlier stage. With no evidence from studies to point to, Oncs will not approve. Of course, you can't be forced to take a med that you don't want to take, but it will be against medical advice if you forego hormone therapy.

    Personally, I would not do it either. My own experience - I had lost 50 pounds BEFORE my 2cm lump appeared. Then lost 20 more after being diagnosed. I have not refused AIs - I am going to use every weapon at my disposal. Sad to say, I have gained 15 lbs of the weight back since going on AI's . I am trying to get more active again and watch my diet. It is a struggle and I partially blame the AI (not totally - certainly some of it is my own lack of effort).

    Regardless of lack of evidence, I still think weight loss is a benefit, especially for hormone positive women. But I would not try to replace hormone therapy with it. Just my own feeling about it.

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  • pajim
    pajim Member Posts: 2,785
    edited July 2019

    Pamela, losing weight isn't going to help the basic problem. If you have ER+ metastatic breast cancer, your cancer cells need (and use) estrogen to grow.

    Yes, if you lose weight your body might make a little less estrogen, but it will still make a lot. It's a drop in the bucket. That's why you need to block as much estrogen from being made as possible. For women who are pre-menopausal, that means shutting down the main source (your ovaries). In addition you take tamoxifen or an aromatase inhibitor to keep the rest of the body from making estrogen.

    What this does for you is to starve (and kill) the tumor cells). No estrogen, no food, no reproduction.

    That does not mean that you shouldn't maintain a healthy weight. It's always better to exercise and have a healthy weight. It's just that it won't kill all the cancer cells.

    Pam

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2019

    Hi Pamela,

    I agree with everyone else that maintaining a healthy weight is a good idea, but not considered a replacement for anti-hormonals. I have always been thin, yet my tumor was 100% ER +, so clearly a body can produce lots of estrogen even if not overweight.

    I have been NED for 8 years on AI’s only, no chemo. Although it would be impossible to directly attribute my good outcome to the AI’s, bc is more complex than just one factor, I am fairly certain that taking them has been an important part of it. Wishing you the best.

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  • Pamela48
    Pamela48 Member Posts: 9
    edited July 2019

    thank you for your replies. I know you are correct. I’m feeling desperate. I’m taking fasoldex and am having a very difficult time with it. I have always been over weight, not obese though. I’ve had a complete hysterectomy years before my first diagnosis . But the hormones just keep on giving 😡. I will stay on treatment, thank you all again!

    Pamel

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  • GG27
    GG27 Member Posts: 2,128
    edited July 2019

    Pamela, tell us what problems you are having on Faslodex & perhaps we can help you mitigate the side effects.

    GG

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  • pajim
    pajim Member Posts: 2,785
    edited July 2019

    Pamela, when I first started Faslodex lo these many years ago, I gained 7 pounds immediately. And I mean immediately. I lost my waistline. I freaked out and they did an ultrasound to make sure there wasn't fluid in there.

    But I'm with GG here. I took Faslodex for 4 years. How can we help you with it? What problems are you having?

    I'd like to get you to the point where you too can say "lo these many years ago". . .

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2019

    Im not on Faslodex but Arimidex. Not sure if SEs would be the same but I felt horrible on Arimidex for about six months, worse than chemo. Extreme fatigue and the muscle cramping was constant. I was going to ask to switch after six months but then the worst of it subsided. It seemed like my body just adjusted to it. I’m still a little more tired than I’d like to be but not every day.

    Walking, stretching and other light exercise can help with achiness and muscle cramps, I find. Even helps me sleep better which then makes me feel less fatigued and more energized. Hopefully, it will get better for you and the other ladies can help you more withspecific suggestions!

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  • Pamela48
    Pamela48 Member Posts: 9
    edited July 2019

    thank you all again for your support. I have been taking faslodex for 5 months now. Each month it gets worse. I have over all pain, even my skull. It appears out of the blue for Two or three days, disappears for 24 hours then it’s back. I am extremely fatigued. I sleep off and on all day then again at night. I’m still tired.

    I had a good talk with my oncologist. This might also be caused by clinical depression. We are skipping the faslodex for two weeks and see how an antidepressant will help. It’s called venlafxine generic for effex or. I’m at the end of the two weeks so I’m guessing it’s getting out of my system (the faslodex) no pain at last! Too early to tell if the antidepressant is working.

    I am still sleeping off and on all day. Anyone have experience with depression along with the faslodex? Thank

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  • GG27
    GG27 Member Posts: 2,128
    edited July 2019

    Pamela, sorry that you're struggling but here's what worked for me, as for the pain, it took a lot of trying different things along with both of my Dr's we finally figured out what works for me. I take one oxycodon at bed on days 2-5 after my shots, then at 5 am or there abouts, I take a tylenol & an ibuprofen this time varies to when I get up to pee, I don't wait for pain to start. Tried & tested for me, it halts the cycle of bone pain which I used for get for 2+ weeks.

    I think ongoing pain can be so debilitating that you may find you feel better if you can get a handle on it, but you & your Dr know what's best for you, so please ask if this might work for the pain. Also, is there a palliative care unit where you are treated, they have lots of tips on how to treat the side effects of these drugs & let you live your best life. GG

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  • BevJen
    BevJen Member Posts: 2,523
    edited July 2019

    On another thread (maybe Ibrance?) some people talked about this effect of Faslodex. Their suggestions were invaluable. First, they said NOT to stand on the leg for the side that's getting the shot, so I've been leaning on my opposite leg for each shot. Then, they said that the faslodex injection needs to be VERY slowly given, and also that it's best when the substance is heated. I am treated at Hopkins, and the nurse who has been giving my shots knows all of this, but I don't think they all do. Finally, some folks suggested taking Claritin two days before, the day of, and two days after the shots. I have been doing that. I've only gotten my loading doses (two) so far, but I've not had any pain other than right where the shot goes in, and that's pretty brief. The nurse also gives me ice packs that I place on the shot locations on my ride home. That helps too.

    Bev

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited July 2019

    hi Pamela,

    I’m not on Faslodex, but I was having terrible aching awful deep bone pain during the first 6 (?) months of my treatment with Lupron, Xygeva, Ibrance, and letrozole. I think that pain may have been a side effect of the meds and also a die off of the actual bone tumors themselves? Also, I was extremely depressed and grief-stricken and believe that played a role in it all too - the meds can all cause or enhance depression, unfortunately.

    I found the two things that worked to help me get past all the pain were exercising, like really exercising. 30 minutes of cardio and weights 4-5 times a week. The second thing that was quite lovely was starting an antidepressant. It changed my world and a lot of my achiness has calmed down quite a bit.

    Hope you feel better ASAP! I know how painful it can be!! I am not in pain anymore, aside from the joint pains that everyone pretty much gets.

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  • VQT
    VQT Member Posts: 1
    edited February 2020

    Hi, Pamela - I've been away from this forum for a long time but just checked in to see about faslodex and depression and found your post. I'm into my second month on Faslodex (three treatments so far) and depression is really coming on strong. I'm feel very unmotivated and don't want to do anything but lie in bed and watch rerun movies on tv. Fortunately I have a job so I can't actually do this, and I get out every day. But my productivity has plummeted on writing projects that I just don't care about any more. It dawned on me that maybe it's actually depression and maybe it traces to the new Faslodex. I switched off of Letrozole because of the fibromyalgia but this is worse.

    If you feel like sharing, I'd be very interested to hear how you're doing regarding this SE, and if others are dealing with it as well. I think many of us are so used to battling pain, fatigue and the disheartening task of slogging through life with chronic fibromyalgia that the onset of actual depression may be hard to spot.

    (BTW, I spent the last hour trying to update my signature to include my progression in 2015 and related treatments (brain met and treatments, various lesions, Kadcyla, etc.) but I can't figure out how to use the system to do this. It has changed since I first signed up and there seems no way to add dates for metastases and treatment changes like before. The "new diagnosis" interface requires info on breast cancer even though the form lets you indicate a recurrence and distant met. I can't find any info in "Help" on how to do this or anyone to contact to ask. Help would be greatly appreciated from anyone with the patience to assist.)

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