Anyone Starting Gemzar/Carbo Have anyone been on these 2 combos?

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nayda985
nayda985 Member Posts: 361
edited July 2020 in Stage IV/Metastatic Breast Cancer ONLY

Hiya ladies!

I start back on i.v. chemo starting tmrw June 20th. I will be doing Carboplatin and gemcitabine...way it was explained to me was that i will do the combo tmrw and next sat. i will be only doing gemcitabine..and the 3rd saturday i am off and the it repeats for the next 6 months..pet scan in 3 months.

I am coming off of xeloda, which didn't work :(...i was on xeloda for 5 months. My hands and feet changed very dark and i am severely fatigued.

According to the my pet scan. I had progression to my lungs (no wonder its been hard to breath)..lol...i have progression to my spinal bones. So onc says lets stop the xeloda and try these two chemos.

I would love to know what the s/e's are with these two meds. will my hair be coming back out...any knowledge will help me. And if anyone wants to join me on this chemo journey for the next 6 months. I would love it, so i won't feel alone, Thank You!!!

I will be posting my day 1 experience tmrw. see you then :)

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited June 2020

    Yes, I did take this combo for three months. No, , I didn't lose my hair. THE worst SE was low HGB. I had to have two transfusions. Also, low ANC caused me to have to postpone TX a few times. However, it did not work for me. That doesn't mean it won't work is for you. Xeloda failed for me too.

    You have liver mets too, right? I post mostly on the that thread. I've gained so much knowledge and support during my three years since my DX of MBC. I have mets to my liver, lung and chest.

    I'm doing well now on Faslodex and I'm six months out from my second set of y90s for my liver mets. The combination of systemic and local TX is working for me. 💞

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  • nayda985
    nayda985 Member Posts: 361
    edited June 2020

    Thank you so much for your response Grannax...I am going to be on this for the next 3months...onc says it lowers blood count also..and that if that happens i will have to use the i think nuopogen shot...which i had to use when I was adramycin/cytoxen...it cause me bone pain....I am going to claim that this one works..I am still currently working. In your opinion do you think Its okay to work while on this?

    Thanks again lady

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  • nayda985
    nayda985 Member Posts: 361
    edited June 2020

    I also wanted to ask if this treatmeant has worked for anyone? Thanks for any response:)

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited June 2020

    Sure, if you feel well enough to work. As you know, low ANC can reduce the body's ability to resist and fight infection. Be careful, especially during this crazy Covid 19. 💞

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  • JFL
    JFL Member Posts: 1,947
    edited June 2020

    Hi Nayda, I have been on Gemzar alone for 6+ months and it is working well and I am VERY heavily pretreated. I do take it with the "COC Protocol", which I suspect is making it more effective. The COC Protocol is a combo of 4 repurposed drugs (mebendazole, metformin, doxycycline and atorvastatin) prescribed by Care Oncology Clinic to be an adjunct to standard treatment. I have found Gemzar very tolerable and am happy to stay on it as long as it works. I work full time at a demanding job with no let up and I have a preschooler running around the house and am able to manage. The biggest side effect is that I get a fever the night of treatment which lasts for a few days. I feel fatigued that night and the next day or two. After that, I feel close to "normal". If I take something (Aleve or ibuprofen) to manage the fever the first night and next day, then I feel fine and don't have any fatigue. The fever seems to be an overactiveimmune response to the treatment - like it is targeting the Gemzar and unfortunately, not the cancer. So anything to lower that inflammation immune response seems to be good. I also need to use my inhaler if I exercise the day of or day after treatment as that will cause an asthma overactive immune response as well. The Gemzar also elevates my alkaline phosphatase and my liver enzymes in a cyclical way - they jump up one week, and then go down on my week off. However, other than showing up on my bloodwork, that hasn't caused me any symptoms. I have found I am able to keep my hemoglobin at a manageable level (mildly low/mildly anemic) with of a combo iron supplementation and Ashwaganda. I have had trouble keeping weight on for a few years but have finally gained a bit of weight back on Gemzar. I certainly look healthier than I have in years. I didn't lose my hair. Not sure how the Carboplatin aspect will impact your side effect profile but wanted to chime in on Gemzar as this thread is not too busy.

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  • nayda985
    nayda985 Member Posts: 361
    edited June 2020

    Thanks JFL and Grannax for shariing all that info with me...I really need it...you know how it feels to start something new. I am still going to work through this...I just need some energy, I was taking vitamin b gummies don't know if it was working or not...since chemo is scheduled on Saturdays...i decided to take mondays off to get tlc for myself. I am so happy it is working for you JFL, that gives me hope which is much needed at this time. Xeloda let me down and Abraxane cleared all the tumors, but it nearly killed me.

    I hope more women reply to this thread with their experiences with this combo good or bad. I want all the information. On Saturday, they gave me, zofran, dexemethasone, and emend as premeds then gemzar first i think, then carbo...everything went okay so far. I have been hit with the fatique as usual. I have been staying on top of the nausea meds, being proactive. Chemo nurse told me that this chemo can cause alot of nausea. As far as hair, chemo nurse said it can cause baldness or thinning of the hair...my onc says it doesn't cause baldness.

    I believe what I hear on this site, because we are living it, not them ya know. I hope others will take this chemo ride with me, so we can get thru this together.

    JFL I am going to ask about the COC protocol on my next visit this friday. But, I heard that metformin is on recall, because its causing cancer. So, i am unsure why that would physicians would still be prescribing that med. I see it at my job all the time when I am keying prescriptions. I am going to talk to one of the pharmacist's I work with tmrw, and see what they say about it, maybe some people can tolerate it better than others, so I am glad it's working for you lady.

    I hope you both have a great day today!

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  • BevJen
    BevJen Member Posts: 2,523
    edited June 2020

    Nayda,

    The recall on metormin was only on the type manufactured by Apotex, and it's an extended release tab.

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited June 2020

    There is a thread here for the COC protocol. Lots of info.

    I'm type II diabetic and one of my meds is metformin and has been for years.

    I had no nausea with Gem/Carb. I also refused all pre meds because I have had so many adverse reactions to all of them. But I'm the exception, most people need them. Be sure to take some OTC meds to help you not to get constipation from the nausea meds. Of course you know that steroids can cause issues with sleep among many other SE. It does help with energy for 3 days then you crash. It caused my blood sugars to go way to high.

    As I said before, the most dangerous issue for me was my HGB going down to 5.2. I had to be admitted because it was so rapidly falling. Part of that was from the chemo and part was from my liver tumors. My IR explained that the blood vessels in liver were so enlarged because my tumors were demanding more and more blood. Scary💞

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  • Andish
    Andish Member Posts: 20
    edited July 2020

    hi JFL

    would you please talk about youre coc protocol

    Wich dose of the drug you have on ?? The dose of atrovastatin? And metformin ? And if course the two other . I need some information . Thanks alot

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