Advice please? Tamoxifen and other options

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Noni
Noni Member Posts: 327
edited November 2016 in Stage IV/Metastatic Breast Cancer ONLY

So... I stopped taking tamoxifen about a week ago. From early on, it caused the worst bone, joint, and all over body pain which has only gotten worse. I've been telling my doctor about the pain and he brushes it off, saying it's not from the tamoxifen. I've asked about other options and he claims that none are as easy as tamoxifen, but then he doesn't recognize that it's not at all easy for me.

Last week during a monthly check up he told me that he thought my pain issued might be fibromyalgia. I got mad, so I went googling to see what I could find.

I found countless women who were taking tamoxifen who also complained about the s/e but were brushed off by their oncologists. They were told fibromyalgia and told to find a specialist.

So, many of the women took it upon themselves to go off the meds and see what happens. As expected most of the s/e stopped and life became rosey.

The only problem is, those women were not stage 4. They were using tamoxifen for preventative measures. Whereas I am using it to (hopefully) shrink my tumors and extend my life.

Well, the tumors aren't shrinking and my QOL is messed up. In fact, the tumors have grown 25% in size since the beginning of the year. The pain and all the rest makes life pretty awful and it seems to be getting worse. Only it's not getting worse because the cancer is getting worse, it's getting worse because of the tamoxifen.

The one thing I do agree with my oncologist is that my bone and joint pain, gastro issues, fatigue, complete fog brain, insomnia, hot flashes, muscle spasms, and overall miserableness is not due to the cancer. The cancer is causing coughing and breathing problems, which are causing the vomiting.

Since I've been off the tamoxifen I'm feeling better. My plan is to stay off them until after Thanksgiving when I get my next blood work and scan. If between now and then all the s/e come back I will go back on the tamoxifen and admit that it wasn't the cause.

There's a chance that this could really blow up in my face and my next scan will show major progression in tumors and tumor markers. I don't think that's going to happen but honestly I am willing to take the chance. I cannot live with this poor QOL.

Honest input, please? I plan on calling my MO tomorrow and schedule an appt to discuss. I really can't believe there are no other options out there.

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited October 2016

    Noni, there are other options than Tamoxifen. QOL is so important with Stage IV! I was on Tamox for 5 short months and they were the worst of my life, and yet some women I know barely have SEs on it. It's so very different from one person to the next. If your MO doesn't want to change tx, get a second opinion or change docs. There are options out there that will suit you better. You are your best advocate, good luck!

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  • Goodie16
    Goodie16 Member Posts: 446
    edited October 2016

    As Linda said, there are other options! I couldn't tolerate Tamoxifen either. So my onc decided to give me Lupron injections to put me into menopause and be able to switch me to an AI. Unfortunately the Lupron wasn't affecting my estrogen levels quick enough, so I had my ovaries removed in July. Since then I've been taking Arimidex with no real SEs.

    Advocate for yourself with your onc and if he/she won't listen, find another one. No one deserves to suffer thru awful treatment SEs, especially when there are other options. I'm also concerned with your reported tumor growth on Tamoxifen...to me that would indicate hormonal therapy isn't working and you should think about moving on to another treatment.

    Best of luck!

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  • jpr143
    jpr143 Member Posts: 26
    edited October 2016

    Noni,

    I was having trouble with tamoxifen in the beginning too. I was only on it for about 4 months when I guess I finally complained enough that my onc took me off to see if the SE's would go away. Some of them did, some of them didn't. In the meantime, this same onc kept brushing me off about some other bone and joint pains I had been having for months. I decided I just couldn't put up with him any longer. IMO your onc should be part of the solution and if he isn't, get another one if you can. You are going to have to be in the care of this doc for quite some time and he needs to do everything in his power to help you have a good QOL while fighting the cancer.

    I have a new onc now who really listens and gave me several options for hormonal therapy. I decided to retry the tamoxifen but instead of 20 mg in the morning, I take 10 mg twice a day. My body seems to tolerate it better and I'm feeling pretty good now. Also, I am so glad I left the first onc. I found out he wasn't doing enough to check on my heart while I was on Herceptin. Per procedure at the cancer institute I go to, he was supposed to get an ECHO test every 3 months and I only had two in the 12 months that I took it!

    P.S. I hope you don't mind me responding. I was only a Stage 1 but I saw your post in the Bottle of Tamoxifen thread. I really hope you are able to find something else that works for you!

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  • indenial
    indenial Member Posts: 504
    edited October 2016

    I was on tamoxifen for 2 1/2 years and completely miserable the whole time. So many awful side effects. Finally I stopped the tamoxifen on my own, because I had zero QOL. Side effects disappeared within a few weeks. I felt almost normal!! Very very slight met growth... I had my ovaries out and started femara. Been on femara about 6 months and it is a million times more tolerable than tamoxifen for me. My side effects are so much more mild and tolerable. Can't believe I suffered so long on tamoxifen.

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  • pajim
    pajim Member Posts: 2,785
    edited October 2016

    Noni. your quality of life is the most important thing. There are many many options. All the symptoms you describe can be side-effects of any of the hormonals. You seem to be hit worse than most.

    First of all, your onc is not listening to you. Either that or he's not understanding what you are saying. That's a major problem. It may be time to look for a new oncologist.

    It probably won't hurt you too much [in terms of tumor growth] to stop tamoxifen for a few weeks. It'll reassure you that the side effects are from the drug. It is always your right to refuse to take a treatment and move on to the next. The doctors work for you, not the other way around.

    The next line of treatment is usually to stop the ovaries (either surgically or medically) and take an aromatase inhibitor (Femara or Arimidex), with or without Ibrance. It's possible that the side-effects won't be any better but you can try.

    To tell the truth I'm surprised your ovaries are intact. Or are they? Are you menopausal?

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited October 2016

    You live in your body. The doctors don't. Yes, some of these drugs really do impair the QOL and it can get ridiculous how forceful one must be to impress that point upon a doctor. Noni, what distresses me even more is that you state you have had a 25% progression since the beginning of the year. While 25% is relative to the size of the mets starting out, you also reported that you have coughing and breathing issues. I AM SURPRISED that you are not already switched to something other than Tamox. What are they waiting for?

    As the ladies have mentioned, a popular alternative would be an aromatase inhibitor (AI) and they have also said that if you not already menopausal (not just Tamox. induced, but for real as in having a blood draw to check for proper low estradiol level) you would also need ovaries out or a chemical form of ovarian suppression.

    Something else to discuss might be whether you could have targeted radiation to shrink whatever it is impairing your breathing. Usually radiation is just given to one main mass (or one general area) so if there are several areas causing trouble, they might just pick the main one for treatment. I do not know if this is done concurrently while on chemo, so maybe find out the proper sequence of having it.

    Finally, if your MO is not taking your well-being seriously, well, you would not be the first woman here to switch to a new MO. Yes, it is a bit of a hassle, but when you get a new one that actually listens to you and informs you of your choices, that effort is well worth it. Good Luck!

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  • NormaJean65
    NormaJean65 Member Posts: 234
    edited November 2016

    Noni......I agree with all the gals that have responded to you. The only thing I can add is during my last onco appt. he told me it takes 3-4 mons. for the Tamo to be completely out of your system. That sounded strange to me as often women are told to stop Tamo 2 wks. prior to surgery.

    I do understand your frustration with the Tamoxifen as after 6 yrs I have side effects caused by something!!!??? My onco was just as frustrated with me and told me I have 2 options.......take it or don't. I am now in the process of going to a new onco. This is awful and I now feel like you.....I have no QOL.

    Please update the list to how you are doing especially w/ the breathing issues. Holding you in my prayers.

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