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FEMARA

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  • annecy
    annecy Member Posts: 24

    Hello ladies - I am confused & don't know what to do? I have been on letrozole for 3 1/2 years ; I have managed the side effects pretty well so far - however, in the last 6 months "joint pains" are increasingly getting worse. As a result of the letrozole & being post menopausal , I have developed osteoporosis and was prescribed "Prolia". I received my first injection in Aug 2017. I have been reading and hearing everywhere about the importance of getting the "Shingles vaccine". I spoke to a young pharmacist yesterday, she said that letrozole is an "antineoplastic"; they don't recommend getting the "Shingles vaccine" while taking this drug "Letrozole" I have not been able to contact my oncologist as she is away for 1 month. Have any of you received the "Shingles vaccine"? I would really appreciate your thoughts and/or comments on this issue. Thank you!

  • marijen
    marijen Member Posts: 2,181

    Found at www.cancertreatment.net -

    While there is a vaccine on the market for shingles, it is not given to elderly patients who are underoing anti-cancer treatment because of their weakened immune systems, a problem that could lead to other problems.

    More information on antineoplastic here:


    https://medical-dictionary.thefreedictionary.com/a...


  • marijen
    marijen Member Posts: 2,181

    I had both while on Letrozole last year, and other than getting a little warm later in the day, no reactions. But until Annecy brought it up I didn’t know any better. Never get a vaccine while on prednizone, I had first hand experience with that! Unbelievable back pain with first dose of prednizone. It’s in the PDR

  • marijen
    marijen Member Posts: 2,181

    And how do we know if we’re immune compromised

  • hikingandhorses
    hikingandhorses Member Posts: 50

    There were other side effects of Letrozole that I forgot to post! High Cholesterol - over 300. Tooth decay - I've never had a cavity in my life - until last year. Now I have 3. And osteopenia. My MO said since I was weakly positive for ER and because I had the full blown chemo earlier, he's not worried about me stopping meds all together. I'm at the point where enough is enough. Time for my body to heal!


  • marijen
    marijen Member Posts: 2,181

    KB870, I have autoimmune hypothyroid. I had shingles in my 40s, thought I would die. Luckily I got to the doctor quick. He gave me pills that started working immediately and said I would never get it again? I can’t remember the name of the pills for sure, butI think there was an X or a Z, or both. Getting the vaccine truly scares me so I haven’t asked for it.

  • marijen
    marijen Member Posts: 2,181

    Well it must have been Zovirax....I have always wondered if what the Dr. Said was true....that I won’t get it again. I knew an older woman in her 70s that got it and she never got rid of it. She died in nursing home. She must have had it for years. Thanks for your help.


  • annecy
    annecy Member Posts: 24

    Finally I got hold of my oncologist and a pharmacist at BCCA (B.C. Cancer Clinic) where I received my treatments. Both have confirmed that it's ok to receive the " Shingles Vaccine". As a result I have decided to get the vaccine and I have received the flu shot yesterday.

    I'm including the information that I have received from the pharmacist.

    Here is the data re: Letrozole and Zoster vaccine

    1.Letrozole drug monograph: https://pdf.hres.ca/dpd_pm/00024971.PDF - no mention of contraindication with zoster vaccine in the drug monograph

    2.Both pharmacy drug interaction references Lexicomp and Micromedex do NOT document an interaction between Letrozole and Zostavax (shingles vaccine) (see attachments) – if there was a contraindication with shingles vaccine, it would have been flagged by the references. I also did a medline search in OVID and did not find any documentation of shingles vaccine being problematic in pts on letrozole – there was no case reports re: pts on letrozole who received shingles after the shingle shot.

    3.According to BC Center for disease control: https://www.healthlinkbc.ca/healthlinkbc-files/shingles-vaccine:

    Who should not get the shingles vaccine?

    Speak with a health care provider if you:

    • have had a life-threatening reaction to any component of the vaccine including gelatin or neomycin;
    • have an immune system weakened by disease or medical treatment;
    • have active, untreated tuberculosis; or
    • are pregnant or planning to become pregnant. Women should avoid becoming pregnant for 1 month after getting the shingles vaccine.
    • If you are ill and have a fever greater than 38.5°C (101.3°F) you should wait until you have recovered before getting the shingles vaccine.

    4.So the question is: is Letrozole an immunosuppressant? Letrozole is not on the immunosuppressant list from Lexicomp (See attachment). As a rule it does not cause bone marrow suppression (so blood monitoring is not done as a rule) although there are some rare cases of low blood counts. So if you have concerns about this, you could get your GP to order some blood work – though really not necessary.

  • annecy
    annecy Member Posts: 24

    HapB, I agree with you I wouldn't get any vaccines while getting Herceptin infusions. Personally, I am done with chemo treatments. So far I am still trying to make it through another 18 months of Letrozole. Our bodies can only take so much.

  • marijen
    marijen Member Posts: 2,181

    HapB you can check the inactive ingredients from any mfr at
    https://dailymed.nlm.nih.gov/dailymed/

    Some of them have very similar ingredients. I always wonder about the talc and the polyethelene glycol (I think that's right)

    Corrected link

  • annecy
    annecy Member Posts: 24

    I am on Letrozole made by Sandoz. The side effects have been manageable until few months ago. I read on one of the thread that it was suggested to try a different Generic (Femara) as the side effects are often caused by the fillers used to make the pills. One thing that helped me through my treatments was to exercise (daily walk) even though my energy was at a low level at times.

  • Bliss58
    Bliss58 Member Posts: 938

    I don't think Letrozole would be considered an immunosuppresent because it suppresses the aromatase enzyme not the immune system, to my knowledge. My Letrozole is manufactured by TEVA, and so far, I've done pretty well on it. I started out with Anastrozole and had a very hard time. I forget who the manufacturer was, but I never tried the TEVA brand. I didn't realize about the fillers at the time, so I may have done better with TEVA, instead MO switched me off it.

  • marijen
    marijen Member Posts: 2,181

    HapB, what app? It’s a website for all drugs. Just put letrozole in the search and you’ll get a list of all mfrs

  • marijen
    marijen Member Posts: 2,181

    Here's the correct link, so sorry, I relied on my femara brain memory
    https://dailymed.nlm.nih.gov/dailymed/


  • 6cats
    6cats Member Posts: 199

    since starting letrozole 6mos ago, my triglycerides, blood pressure and blood glucose have gone up.(And I have a stress fracture in my foot) My PCP wanted to put me on cholesterol meds. My MO concurred. I asked if the letrozole could have anything to do with it and she said some but not all of it and agreed to putting me on Tamoxifen. We will check everything again in 3mos.

    I'll keep you posted....

  • marijen
    marijen Member Posts: 2,181

    They must be pressured to deny, deny, deny. HapB, which ingredients are the carcinogenic ones, pls? I'm so glad I quit. Three months now, starting to feel better. My hands still stiffen up at night, my feet still hurt but not as much. And it takes a while to get started in the morning

  • dtad
    dtad Member Posts: 771

    Hi everyone...isn't it bad enough that so many of us suffer side effects from these powerful drugs? In addition we should not have to put up with MOs denying they are from the drug they are prescribing. IMO it insults our intelligence. We need to speak up for better treatment options and find better docs!

  • margochanning
    margochanning Member Posts: 70

    I was taken off Letrozole by my MO in the first year when I was experiencing severe dizziness and nausea; he first referred me to an ENT who ruled out sinus/inner ear as the source of dizziness. When that was ruled out, he told me to stay off Letrozole for 2-4 weeks to see if that relieved it. It did, and I remember that it wasn't until around the 4th week that I started to feel like my former self. I imagine the longer you are on the drug it may take longer for the SE's to subside. But in some cases, like the arthritis I've developed in the last 5 years, those things will never go away.

  • wabals
    wabals Member Posts: 192

    Letrozole is the last AI try for me. These drugs elevate my liver enzymes which is not a good thing. My GI doc is sure they are the cause tho my MO at Hopkins says she does not believe it. Plus severe joint pain and weight gain. At 74 quality of life is very important. Bye bye AIs😀image

  • CCS648
    CCS648 Member Posts: 19

    My oncologist said that although the drug (exemestane at that time) would be out of my system in 2-4 weeks, he said that I might still have side effects if it was the lack of estrogen causing them, rather than the med, since he didn't know how fast my body was making new estrogen. He said he suspected my problems were a combination of side effects from the drug, and effects on body systems caused by lack of estrogen.

  • KBeee
    KBeee Member Posts: 695

    $220 per month would be $13,200 over 5 years, but that is still very expensive.

    Call the company. Many have patient assistance programs

  • marijen
    marijen Member Posts: 2,181

    Found at Stage IV. It includes AIs. Click the link. Important game changer in process. I hope Heidihill doesn’t mind...

    17 hours ago Heidihill wrote:

    HLB, I don't know about abemaciclib but the problem with tamox is that it does not work well for about a third of ER+ women, mostly because it is not metabolized by the liver into endoxifen which is 100 times more potent than tamox itself. I am an ultrarapid metabolizer and have had my endoxifen levels tested and they are good at just the low dosage of tamox I take.

    https://www.cancer.gov/news-events/cancer-currents-blog/2017/endoxifen-breast-cancer-NCI-support

    There are clinical trials for endoxifen and in one of the Phase I trials, the results were encouraging with anti-tumor activity in women whose tumors had progressed on tamoxifen, aromatase inhibitors, and fulvestrant (Faslodex®).

  • marijen
    marijen Member Posts: 2,181

    Bosom Blues. I’m not so sure losing your hair mean the drug is working for what it’s intended. I think it means it’s working at causing hair loss. IMO. We can get the side effects without the intended success.

  • KBeee
    KBeee Member Posts: 695

    HapB, Definitely call the companies. Many offer discounts or low or no co-pays if you ask. $13,000 is still a lot of money

  • dtad
    dtad Member Posts: 771

    HapB...of course they should test our hormone levels. IMO they should be tested before during and after anti hormone treatment. The problem is most MOs know very little about female hormones. This is exactly why I feel there should be an endocrinologist or at least a gynecologist on our BC team. We do need estrogen for our heart and other vital organs. That is why we experience SEs when on anti hormones. We all have to make our own informed decisions about treatment options. I support and respect all individual decisions made. Good luck to all navigating this complicated disease.

  • wabals
    wabals Member Posts: 192

    My NP checked my hormones this week and both estradiol and progesterone and DHEA are very low. But how do I interpret that in terms of treatment. Seems like this is one area in which the ball has been dropped totally. My onc will still say I need AIs. How does she know that? I agree that a gym. Endocrinologist should be involved

  • sweetspirit
    sweetspirit Member Posts: 2

    Hi, I've been taking 2.5mg since nov. 2016.  My calcium level has been increasing.  Onc refering me to endocrinologist to have parathyroid checked.  Never had this problem before femara,  As of muscle aches, I have arthritis and so cannot distinguish.  Hot flashes have increased.  I am 71 and thought I wouldn't  see a difference, but there s a major increase.

  • HoneyBeaw
    HoneyBeaw Member Posts: 150

    Susan and Eren

    Agree with your comments, I have had no issues with Letrozole and was really scared to take it just from reading all the comments on it and as for the chemo I was terrified almost to the point of not taking the treatment . While I did have issues they were all manageable. My biggest issues during chemo were the Steroids that I was given. I would get so high on them and crash so hard when I came off ., but again that was all managed by lowering my dose .

    While I understand some people have bad SE, most do not and to not take a medicine that could save your life due to fear is simply unacceptable.

  • dtad
    dtad Member Posts: 771

    Honeybear...I'm happy you are doing well on Letrozole. I'm not opposed to anti hormone treatment. However this is the second post of yours I read where you stated that its unacceptable not to take them. Please be careful about making blanket statements like that. We all have to make our own informed decisions. Everyones circumstances and experiences are different. We need to respect and support all individual decisions made. Good luck to all.

  • HoneyBeaw
    HoneyBeaw Member Posts: 150

    Tdad

    I Never said it was unacceptable to not take them, I said it was unacceptable to let fear rule your life. If you are not taking them due to fear and not reading or educating yourself or giving them a chance, trusting your Dr.......Then that is fear ruling your life and that is unacceptable..

    If you are gong to quote me then please make sure you get it correct .

    With that I would say have a great day ladies