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Hormonal Treatment for Stage IV

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  • sondraf
    sondraf Member Posts: 1,631
    edited December 2020
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    You may need to try a few different generics (if possible) to find one with the least side effects. When I was under the public NHS system I had to take whatever the hospital pharmacy gave me, which was usually sourced from the cheapest supplier. There were a few months where it kept switching every month and I was able to find a generic I liked. Then I got 6 straight months of one that was always the worst and made me more creaky and sore than the others. After I switched to private I now get my letrozole through large pharmacy chain and I can request that they source my preferred generic. Night and day - within two days of starting preferred pills all the aches went away and now I have few issues at all.

    Its all those damn fillers!

  • JoynerL
    JoynerL Member Posts: 1,392
    edited December 2020
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    Very encouraging, moth! This should open up more options, it would seem.

  • moth
    moth Member Posts: 3,293
    edited December 2020
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    Sondra, that's interesting. I'm in Canada & getting it through the cancer agency pharmacy so I suspect same as NHS, there won't be choice. I'm doing a teach with the cancer pharmacist next week and will ask. If I have problems, I will see about accessing it privately.

    Joyner, yes, I'm cautiously optimistic that this gives us 1 more way to stymie the tumors. Final path said 3/8 Allred score so hopefully enough..

    I'm so stiff already tho :( I can't imagine more. The cold and damp are really making me sore. Hoping I'll tolerate it well

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited December 2020
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    Interesting to read about the different supplements folks use for the SEs from cancer treatment. I use Gaia turmeric "joint", and I think it helps with stiffness and locking finger from Arimidex. Have been using it for years. Even before BC. Have been taking Arimidex for almost 16 months now. SEs less than with generic anastrozole. Did not really notice much until about 6 months, and they do seem to be getting worse. Also take glucosamine/chondroitin, not sure how much it helps. Recently started using Boswellia (500 mg) for immunity since low blood counts from Ibrance and risk of Covid. Interesting that one person said it helps with joint pain, hope it does. Did try CBD and CBD/THC , but did not help me, though some people post that it does help them. I do acupuncture as well which also helps. Supplement information is posted all over the place on this site, often with particular treatments/drugs a person is using to fight cancer. I think diet and exercise also affects SE. Staying hydrated and active helps. Too much meat makes it worse.

    2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

    2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.

    6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. eventually BC on R-side Dx. 0/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance.



  • moth
    moth Member Posts: 3,293
    edited December 2020
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    Picked up my letrozole today. I'll start tonight.

    for stage 4 during chemo & other treatment i don't think I'm allowed turmeric? I also wasn't allowed omega 3 when I was on the trial but I will ask about it when I see the MO in January. Increased joint pain worries me.

    Question - how do you differentiate between cancer night sweats and hot flash night sweats?

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited December 2020
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    Here is an article I found when I was looking at different brands of letrozole.

    http://www.ndhealthfacts.org/wiki/Excipients_and_Fillers

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited December 2020
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    SP - thank you so much for the link to the article on Excipients and Fillers. I recently asked a pharmacist what changed with Ibrance, since the capsules needed food and the tablets do not. He said the drug did not change. So I rephrased my question and still did not get an answer. He clearly did not understand the question. The article won't answer my question but does underscore the importance that all generics are not the same and not the same as the brand name. For some, it might not make a difference, to others, a huge difference. Take time to read the info sheet that comes with the drug - this is the sheet from the manufacturer, in very very tiny tiny print. Ibrance capsules that needed to be taken with food. Their study looked at fasting and 3 levels of food intake, up to 1000 calories with 30 % fat (? not sure). The level of absorption really changed as food increased. It did not describe if the food intake was an interval before/during/after or alll at once. This was never explained to me. Fortunately I like a big breakfast, so probably was ok. A moot point now since I think ony the tablet is distributed. But so many things affect how well a drug might work as well as SEs.

  • sondraf
    sondraf Member Posts: 1,631
    edited December 2020
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    We are still on capsules over here and I just switched to taking it with evening meals as otherwise I was WAY overeating at breakfast and throughout the day and putting on weight. So like tonight I just had a slice of quiche (with goat cheese and a crust made from oat flour/almond flour and something else I cant remember) and a salad on the side and took the pills halfway through. I've noticed this month it certainly seems like I am more fatigued than prior months. Now I wonder if I am absorbing more than before

  • moth
    moth Member Posts: 3,293
    edited January 2021
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    I thought I'd already gone through menopause but letrozole is giving me a mulligan with the hotflashes

    image

  • moth
    moth Member Posts: 3,293
    edited August 2021
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    Hey everyone, I have a new thing: trigger thumb!

    If it were just 1 I'd maybe be convinced that it's age/overuse/coincidence but it's now both and MO says it's a thing with letrozole.

    She's offered to give me a 2 week break from letrozole and if it improves to go on exemestane instead.

    Or get steroid shot into the thumb. Anyone dealt with trigger finger or thumb?

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited August 2021
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    Moth - generic anastrozole gave me stiff hands and a trigger finger in the left almost immediately. Brand name Arimidex much less stiffness, and much less trigger. I am now on Exemestane- Everolimus. Stiffness getting worse. I think turmeric helps. I use GAIA as well as often adding tumeric/black pepper to meals. I notice the absence of it rather than presence, if that makes sense. I also use glucosamine/chondroitin, jury is still out on that one.