Chemotherapy induced Menopause and Arimidex suitability.

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thewisearchitect
thewisearchitect Member Posts: 4
edited September 2017 in Stage IV/Metastatic Breast Cancer ONLY

Hi All,

Many thanks for reading my question. I am a concerned brother. My sister in in stage 4 of metastatic breast cancer.

Just to point out that she lives in a third world developing country (Pakistan), therefore please bear in mind that the medical profession is not as closely regulated as one would ideally want (like here in the UK).

My sister (then 34 years old) underwent mastectomy 3 years ago (she was already in Stage 3/4 then). She was then put on Chemotherapy (which also resulted in Menopause since). She was also prescribed Nolvadex (Tamoxifen). After taking this med just for a few months she asked her doctors to find an alternative (due to the hot flashes and potential risk of secondary cancer developing due to Tamoxifen). Her doctor changed her medicine to Arimidex. She has taken Arimidex for last 2 years.

Since taking Arimidex her aches in her bones have increased. We took her for scans and found out that spots have spread throughout her bones all through these two years. My concern is that the doctor has NOT focused on the fine print that Arimidex is only applicable for post-menopause women OR perhaps the doctor is considering the chemo induced menopause as the same thing as natural menopause. Either way my suspicion is that Arimidex is NOT working on her.

I want to understand if I am thinking on the correct lines or not. If I am correct, should she not go back to either Nolvadex (Tamoxifen) or perhaps use the new anti-estrogen med called Faslodex?

Also what concerns me is that her doctor never asked her to do a blood test to check the levels of Estrogen to confirm if Estrogen levels are down. Is is normal to not ask for such a test?

Thanks in advance

Aamir.

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  • Goodie16
    Goodie16 Member Posts: 446
    edited August 2017

    Aamir,

    Much of what you wrote is correct. Arimidex is known to cause bone/joint pain that is sometimes worse than Tamoxifen. For me, it was the opposite, I couldn't handle tamoxifen but could tolerate arimidex. Before taking Arimidex, my doctor tried suppressing my ovaries with a drug called Lupron. When this wasn't working fast enough, I had surgery to remove the ovaries and uterus. I then began taking Arimidex and have been doing well on it for the past year.

    In your sister's case, it seems that she had a progression on Arimidex as the scan showed spots on her bones. In this case, I would recommend you ask the doctor for a new treatment. Some doctors will treat with another anti-hormonal (like Faslodex) and others will want to do a chemo regiment again. I would also encourage you to ask your sister's doctors to test her estrogen levels via the Estradiol or FSH tests. If she is no longer in menopause, taking Arimidex, Faslodex, etc isn't appropriate as these drugs affect estrogen in the body differently in women in not in menopause.

    Best of luck to you and your sister.
    Carrie

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited August 2017

    Aamir,

    I am living proof that you can be post-menopausal, and not respond to Arimidex. Chemo induced menopause is considered "real" menopause, as far as treatment goes, if verified by a blood test.

    What is worrisome is that she was on Arimidex for two years, possibly having progression the whole time, and that this was not picked up by a tumor marker blood test, or imaging.

    PM a member here by the name of Best Bird, and ask for a copy of her guide to metastatic breast cancer treatment. She has created a wonderful treatment resource, and it could be useful as it seems that your sister's doctors aren't keeping up with standard of care.

    I am used to treatment protocols that include:

    1. Monthly blood tests to check tumor markers. For some women, TMs aren't diagnostic, but you need to run the tests, correlated with imaging, to find out.

    2. Frequent imaging: approximately every three months when one isn't stable, every six months if newly stable, and yearly for those lucky ducks who have been stable for a year or two.

    3. Monthly check-ins with the Oncologist to discuss symptoms and to have the doctor perform a physical check on the patient. It should include palpation, listening to the heart and lungs, weight check, blood pressure check, and a review of recent imaging and blood work.

    It truly sounds as if she should have more oversight. You are a good brother!

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited August 2017

    Amir,

    As noted above, chemo induced menopause is real menopause. I was originally diagnosed at 38 and chemo put me into menopause. I had five years on Tamoxifen and then three years of Aromatase Inhibitors (originally Femara and then switched to Anastrozole). However, before they put me on the AI they did check my estrogen levels. Now, after a diagnosis of MBC, I am back on Anastrozole again and it seems to be working.

    It does appear that, regardless of her hormone status, the Arimidex is not working for your sister as she has had progression. A change is in order, possibly to chemo to get the tumour load reduced. They can check her menopausal status while she is undergoing chemo, possibly considering ovary removal.

    Your are a wonderful brother to be advocating for your sister. I would get a copy of Bestbird's guide as suggested and use this forum frequently. There is considerable knowledge here and a group of very caring individual's. I hope you can get your sister's treatment back on track.

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  • thewisearchitect
    thewisearchitect Member Posts: 4
    edited August 2017

    Hi All,

    Seriously I am overwhelmed with all this response. I will take into account all the advice and will reach out to "Best Bird" for the guidance document.

    My sister' oncological care has indeed been below par. I wonder how many more ladies suffer and sadly pass away in third world countries just because the doctors are not doing their job properly. You will not believe when I say this that her oncologist never ever asked her to check her Estradiol/Oestrogen levels after her Chemo (and even after he put her on Hormonal Therapy). He simply "assumed" she has a full menopause. I did not want to take any chances so I asked her to get her Estradiol level checked. Just yesterday I found out that my fears were indeed right and her blood does contain way more oestrogen than it should have while under an AI treatment. The expected value (I researched) should be below 5 pmol/L...her levels were around 65 pmol/L. This means that all this time the cancer cells had freedom to roam around and multiply at will. I have now asked her to switch doctors, switch to a different HT (perhaps Faslodex - but new doctor will advise) and most importantly start using an Ovarian Suppressing medication (or get them removed). I am actually fuming with anger at such medical negligence from her oncologist. Her oestrogen levels should have been checked every few months. Her ovaries should have been suppressed too (or removed). Arimidex may have actually worked if the doc used some common sense.

    She has consulted a new oncologist and he is suggesting that she needs to undergo Chemo again and take HT to try and stop it multiplying further. He is keen to put her on Faslodex too - which isn't cheap (around £550 a month which I will have to start funding from my budget).

    Anyways thank you so much to all you lovely people for sharing your thoughts, well wishes and providing me with more clarity.

    Regards

    Aamir


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  • Freya244117
    Freya244117 Member Posts: 603
    edited August 2017

    I've never had my oestrogen levels checked. I don't know if it is standard elsewhere. I only had scans done when I had symptoms of progression, and my tumour markers never changed. It is hard to tell if your sisters care has been sub standard in my opinion. Best wishes to her.

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited August 2017

    I didn't have my estrogen levels checked when in chemopause until I had progression and I'm at a top 10 cancer center.I agree it's something that Seems common sense. She's lucky to have you in her corner.

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  • Midwest_Laura
    Midwest_Laura Member Posts: 168
    edited August 2017

    My MO does not trust the tests to check estrogen levels. He offered monthly Lupron shots or an oophorectomy after my chemo was complete. Even though I was in chemopause, he didn't want to take any chances. I choose the ooph because it seemed easier than monthly shots. (I wasn't using my ovaries anymore anyway.).Your sister is lucky to have you, Aamir.

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  • thewisearchitect
    thewisearchitect Member Posts: 4
    edited August 2017

    Thanks you all once again.

    I have asked her to consult a gynaecologist too in order to seek some guidance regarding oophorectomy. I am not sure if Lupron is better or getting the ovaries completely removed is better. Either way they should be completely suppressed for any future HT to work. I will keep you all posted.

    Many thanks for your support

    Regards

    Aamir


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  • thewisearchitect
    thewisearchitect Member Posts: 4
    edited September 2017

    Hi All,

    I just wanted to give a quick update to all of you.

    The patient has deteriorated in that her spine is now showing tumors within it - which is either compressing the nerves or has eaten up the nerves, which has resulted in her losing control of her legs. The patient however is still in high spirits which is a good sign.

    In parallel I have also been battling the oncologists in her country who seem to be either too ignorant or too reluctant or too egoistic to sincerely admit that her past treatment was below par and that a new strategy is needed. Nevertheless I have tried hard and her new oncologist has agreed that Faslodex should be made part of her treatment (along with current chemotherapy sessions she is going through).

    However the problem now is that Faslodex is NOT easily available in Pakistan. It is literally "smuggled" into the country - which makes its supply uneven. I don't want to get a few doses and then wait until the next is available by chance.

    I am now trying to find out other ways of getting Faslodex injection supply (at least 3 - 6 months supply). I asked a Pharmacy in the UK who confirmed to me that it will only be given via a UK/EU based prescription. A prescription from an oncologist from Pakistan is not acceptable here. I don't know what to do now. Where to get these injections from?

    Any advice or ideas in relation to Faslodex availability will be most appreciated.

    Regards

    Aamir Islam

    P.S. Just to clarify the patient is not my real sister. She is the wife of my cousin. She has lost her dad and mom recently. Her mom died of cancer too. I am trying to help her to the best of my abilities like a brother. Many thanks for reading, your advice and your wishes.

    I have also setup a JustGiving page to collect some donations to fund her injections. Please search for "nosheen-stage-4-cancer-appeal" on the JustGiving website.


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