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Gem/Carb

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  • Grannax2
    Grannax2 Member Posts: 2,387
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    Thanks LoMa. I appreciate your encouragement. I’m sure I will feel better on only Gemzar. I sure hope it works as well for me as it has for you. Thanks.

  • Leee
    Leee Member Posts: 115
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    Please don’t be discouraged!
    MO lowered Gemzar by 15% after the first tx and recently dropped Carbo. I had a great response after the first 3mo.

    I have scans and MO next week.
    💕

  • Grannax2
    Grannax2 Member Posts: 2,387
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    leee Did your counts get better? It makes sense that it would be less toxic. I'm looking forward to feeling better. Between the hospital and low RBC and now the low ANC, I just feel wiped out. No energy at all. Worried I will catch something and not be able to fight it.

    Looking forward to feeling better. 💞

  • Liwi
    Liwi Member Posts: 249
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    I’ve also had problems with low ANC and hemoglobin on this combo. But not as low as .5 wow Grannax, that is really low . My oncologist didn’t mention dropping the carbo as an option. I’ll have to ask about that if I keep having issues. She did lower my dose by 10% on both for my infusion last Monday. I’m postponing my second round for a week because we’re going to a wedding in Carmel next weekend and I’m hoping to feel good to enjoy it there by the ocean.

    My three months scans showed little bit of regression and otherwise stable disease with this treatment. I hope it keeps working for a while.

    Best wishes to all.
  • Leee
    Leee Member Posts: 115
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    Yes it worked plus adding Neulasta.

    Does anyone’s MO mention this chemo until stable or better and then switching to something less toxic??

    Sounds good but a little nervous if it’s working.

  • Liwi
    Liwi Member Posts: 249
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    I discussed switching to xeloda for and having this available to go back to in the future. My oncologist said it is an option, so I am thinking about it. It makes me nervous to change something that is working. Also I am concerned about hand/foot syndrome as had horrible blistering on my feet with Doxil and had to stop that treatment. But I like the idea of oral chemo instead of infusions for a while. We just spoke about it at my appointment last Friday and I’m not sure what to do. Leee are you considering something similar?
  • Grannax2
    Grannax2 Member Posts: 2,387
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    I have infusion of reduced Gemzar IF my ANC is high enough. I’ll let you know tomorrow.

  • Leee
    Leee Member Posts: 115
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    Liwi - My scan shows stable so I’ll be curious what is recommended next.
    MO had mentioned a couple options next but I never know the actual plan until the appt. this week.

    I’m ready for a break from the IV chemo if possible and agree it would be nice to put this back on the shelf for later.

  • Grannax2
    Grannax2 Member Posts: 2,387
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    No infusion for me. My ANC was even lower. It was .75 and my WBC looks like it's trying to come up a little 3.8 but ANC is going down?!?! Anyone understand the logic on this? My MO is puzzled. It's been 3 weeks, September 24. I feel very vulnerable.

    We will try again on Tuesday. Also getting PET and results and Neulasta Inbox patch thing. I have scansxiety big time. I'm very worried that my liver and lung mets are growing. I've had increased pain in the liver area and decreased breath sounds in my lungs. I feel run-down and emotional. I'm a mess. Plus that 5.5 HGB hospital event scared me. Now my ANC is scaring me.💞

  • Liwi
    Liwi Member Posts: 249
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    I continue to have issues with low neutrophils. Last Monday I was fine after a 2 week break but today my ANC was .8 so my 2nd treatment for cycle 6 had to be canceled. The nurse mentioned that they may put me on an every-other-week infusion schedule which would be fine with me if it is effective for treatment, which I don’t know.

    I have an appointment Thursday with my MO and will discuss. I also want to ask her again about changing to Xeloda now, before Gem/Carbo fails. My counselor suggested I write out the pros and cons of changing to help decide, also get input on it from my MO. It’s a tough decision but the neutrophil issue is definitely becoming a con for Gem/Carbo. It seem like the longer people go on the treatment, the more counts go down. My hemoglobin is only ok because I get shots every 2 weeks to boost it. And it’s still below the normal range, just not dangerously low.

    It’s been quiet on this thread lately. I hope all are doing well.
  • Grannax2
    Grannax2 Member Posts: 2,387
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    i found out on Thursday that Gem/Carb failed after only three cycles. I'll be starting a new TX but don't know what is next. I'm hoping to get another y90. I should find out this week. 💞

  • Liwi
    Liwi Member Posts: 249
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    So sorry that Gem/Carbo didn’t work for you Grannax. I know you’ve had good response with Y 90 in the past so that sounds like a good plan for you.
  • Grannax2
    Grannax2 Member Posts: 2,387
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    its officially in the books, I get to have another y90. Mapping on November 13, first lobe on November 20., second lobe about a month later.💞

  • Liwi
    Liwi Member Posts: 249
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    Way to go Grannax, glad this is all resolved.

    I am changing to Xeloda this week, before Gem/Carbo fails. We decided when I had my appointment with my MO last week. Hopefully it will give me good results. It will be nice to have a break from my infusion appointments.

  • grigoris
    grigoris Member Posts: 8
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    Hi from Greece. My wife had the first infusion of gem/card this morning. She has refractory er+/pr+ with many spots in the liver. She is struggling with mbc for 8 years. She has gone through all hormonals. Taxol carbo combo failed her after 8 months. We hope in better results. I will keep you posted.

    Grigoris

  • Grannax2
    Grannax2 Member Posts: 2,387
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    grigoris. Gem Carb was not to hard on me except for HGB and ANC, it's hard on the bone marrow. And it really works for many who take it. I hope your wife is one of those. Unfortunately, I was not. My liver mets grew through my 3 months on it.

    I just had my y90 last week. It worked for me in 2017, I'm hoping it will again. My left lobe will be done in about a month. Has your wife considered this local treatment for her liver mets?💞

  • Deedi
    Deedi Member Posts: 27
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    I've just started the gem /carb treatment after having surgery to remove my expander ( metastatic after reconstruction long sad story and still no boob) and my neutrophils were 0.79 after the first treatment. I couldn't believe that I was not able to get my second treatment. Scares me to the point of an emotional mess. ITs been a tough month. Dr Put me on antibiotics, I guess worried about infection from surgery or recent removal of drain tubes. Is it normal to have low counts so quickly? has anyone else felt breathless or heavy chested with the low cell counts?
  • Deedi
    Deedi Member Posts: 27
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    Grannax. I'm glad you have the option of th y90 especially since it worked well in the past.

  • Grannax2
    Grannax2 Member Posts: 2,387
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    deedji. I didn't have too low ANC until my 4th TX but there is an injection they can give you for that if it doesn't come back up after waiting a week or so. Very low HGB happened to me twice while I was on my 3 months of gem carb. Of course there's an injection for that, too. But I had to have transfusion two times.

    Thanks, I'm very thankful for the opportunity to have another y90. Unfortunately, it takes three months for the scans to verify that it has worked. Oh the waiting games we have to play.💞

  • Deedi
    Deedi Member Posts: 27
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    thank you grannax2. I'm grateful for your response. I need to go back and look at the numbers. I thought she said my neutrophil where low but it was my also wbc. I think maybe % neutrophil. I'm starting to move through these treatment options quickly and it keeps growing making me nervous. I am a year into this tnbc metastasis and I'm realizing I'm probably not educating myself enough and need to research trials with a little more intent. I can feel the subclavian tumor now and see swelling in my neck and the reality is kicKing in. I don't get on here often until I start to feel the panic and it probably shows. Thank you for sharing your experience. So kind and reassuring. The waiting game is brutal at times. Y90 worked for you in the past so we will hold onto that. I will be watching for and hopeful for good news from your scans over the next month. Will keep you in my thoughts and thanks again

  • nbnotes
    nbnotes Member Posts: 338
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    Just finishing week 2 of my 4th cycle of Gemzar only. We have reduced the dose by about 1/2 at this point b/c my counts kept tanking ANC, wbc, rbc, hgb, and platelets. It has been a major platelet killer which has been the biggest impetus for reducing the dose. I've gone neutropenic enough each time that they tell me to basically quarantine myself in my house by the second weekend. Lots of mask wearing. I teach college, and thankfully I have been able to keep up with my classes through masks (both for me & providing them for students if they are a little under the weather) since that is what my insurance is through. Thankfully my counts do tend to rise by the mid/end of week 3.

    I have my petscan this coming Friday, and then I leave for a trip to Israel. I won't get my results until 12/17 which will feel like forever, but super thankful that I'm getting to do the trip.

  • Grannax2
    Grannax2 Member Posts: 2,387
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    rbnotes. Yes, thankful for your trip. It will keep your mind occupied while you wait. Hoping for good results for you.

    Deedji. ANC is absolute neutrophils count. It's % of WBC. Even if WBC is low, it's the ANC they look at to determine if you can have another TX. Usually, if it's below 1.5 they want you to wait a week and or get the injections before you can have TX. If HGB is below 7 or 8, they usually want you to have a transfusion. It's certainly a learning process, I've been at this 27 years. 💞

  • grigoris
    grigoris Member Posts: 8
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    Hi! My wife had the second infusion of gem/carb yesterday. Paletelets were just on the limit. The rest of blood tests were ok. Today she is having bone and muscles pain. Somehow like flu kicks in. Grannax so sorry gem failed you. Hope y90 will work as it has already done.

    I will keep you posted.

  • Grannax2
    Grannax2 Member Posts: 2,387
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    I go in for my labs tomorrow. The results will determine how my liver is functioning three weeks post y90. If it's good news, the left lobe y90 will be scheduled.

  • nbnotes
    nbnotes Member Posts: 338
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    Supposed to have my week 2 treatment today, but counts were too low to have it. Even though I'd had 2 weeks off due to a trip, my wbc were 1.5, ANC .98, and platelets 69. Gemzar has just been killer on my platelets. Normally those numbers are more like what I have when I get my labs done in the week 3 off week. I guess the good news is I'll have no chemo side effects while celebrating Christmas today & tomorrow. Thankfully we were just doing low-key things at family houses for the holidays; so, I can still enjoy it.

  • Gaiter62
    Gaiter62 Member Posts: 1
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    I did not like the steroids either & requested that I not receive them on my second infusion. Got a not-so-nice surprise: a horrible rash from belly to neck! The itching was non-stop & nothing helped. So, from now on, it's steroids for me.

  • proudtospin
    proudtospin Member Posts: 4,671
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    hi everyone, just found this thread, i have been on gemzar alone for about 6 months. Been dealing with it pretty well untill this last infusion. Yikes, my labs showed my white blood counts were borderline but they said we could do it.. came home feeling like crap, realized my bp was very lo, for me wbo usually struggles with hi blood pressure.

    I am due for full body pet scan next week so hoping for good results

    Glad i found you all, good info