Can someone share their experience with carboplatin'gemzar

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lisajo6
lisajo6 Member Posts: 261
edited October 2018 in Stage IV/Metastatic Breast Cancer ONLY

I am running out of options and am now on these two chemos. I really want to know if I will have any good days. I am trying to save my liver. Not having much luck

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  • AllyBee
    AllyBee Member Posts: 128
    edited August 2018

    Hi lisajo6,

    I am on this combo but have only done one treatment so far so I can't offer much insight. I've read that some people have a great response to it though.

    In terms of side effects so far, a little but queasy the first two days and really tired for about a week. I'm 11 days after treatment now and feel pretty much my normal self but it's probably too early to tell if this will be the norm.

    I had to miss my second dose of gemcitabine due to low platelets which has made me really anxious, I just want to feel like I'm doing something.

    Sorry I couldn't be more help, hopefully someone else can give both of us some further information.

    Wishing you awesome results with this treatment.

    Ally

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  • Daywalker
    Daywalker Member Posts: 99
    edited August 2018

    Hi Lisa, have you had any Foundation One testing done, or anything similar to determine the various pathways of your tumors?

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  • katfuller15
    katfuller15 Member Posts: 25
    edited August 2018

    I’m on this combo treatment now and like you lisajo6 trying to save me liver. I’ve only been able to have 1 treatment so far. My WBCs are extremely low for the first time ever and I think it’s from the gemzar. I’ve read many success stories with this combo with liver mets. My doctor wants to try this to get me back stable in hopes to get me into a clinical trial so I’m eager to know other experiences with this combo

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  • lisajo6
    lisajo6 Member Posts: 261
    edited August 2018

    This must not be a popular thread. I had both chemos last Thursday after I had to skip a week due to my platelets. I get a low dose-so my side effects are not too bad. I have constipation issues and am tired of course. My liver panel was a tad better last week. I just hope this works! How are you doing katfuller15? Allybe?

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  • AllyBee
    AllyBee Member Posts: 128
    edited August 2018

    Hi lisajo6,

    I've been wondering why we don't see much posted about Gem/Carbo, are not many people on it anymore? It is the first chemo my oncologist suggested so I thought it would be pretty mainstream.

    I'm doing well. I had my second dose of Gem and carbo yesterday. I had to skip the gemcitabine only dose the week after because of low platelets and was meant to do gem and carbo last Thursday but my platelets were still only 68!!!

    I'm not one to push natural therapies but my mum bought me some papaya leaf tea, I've been having 2 cups a day since Thursday night and my blood test on Monday my platelets had jumped to 301!

    I asked the chemo pharmacist about it yesterday and she said that they are a bit wary of things with antioxidants in it but allowed me to keep taking it as it's only low dose. She was pretty surprised how much my numbers had come up after being so low for 3 weeks. No way to tell if the tea made any difference or if my body had finally had enough time to recover. The real test will be my numbers next week when I'm meant to do gemcitabine again. Might be worth asking your oncologist about.

    So far side effects are much the same. I had a sleepless night last night due to the dexamethasone and today my face feels flushed. A little bit queezy but ok as long as I don't let my stomach get empty. I eat all day long lol.

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  • ThunderJeff
    ThunderJeff Member Posts: 38
    edited August 2018

    My mother, who passed away last month, failed a clinical trial with keytruda+xeloda, had progression, and moved on to gemcarbo. After four cycles of gemcarbo her mets (lymph nodes, lungs, liver. which she had at dx) were all holding steady or had noticeably shrank according to the CT. I'm still in shock over how fast she declined after that CT, but she never made it to a next scan. She ended up doing four more cycles but platelet counts became a major issue her last two cycles (she couldnt get scheduled infusions until numbers bounced back). I know the last infusion was administered when her platelet count was only 80. That was June 20th. I saw her on the Fourth and she looked to be gaining some strength/appetite back, but by the 16th she had begun to transition and she died on the 21st. We still dont know what happened, and her doctors implied that she "gave up" when I asked them how it was possible to go from on the bounce-back to gone like that (they saw her 7/5 and were "surprised" when they got the news--she was merely 9m from dx). Last dose was too much given platelet levels? CNS involvement (there was some speculation of that)? It's something that haunts my family.

    Here's the good news: I think her situation was uniquely horrible and the result of a confluence of events that would be politely described as terrible luck. In a vacuum, her treatment was certainly "efficacious" (in the killing of malignant cells sense). My understanding is dosages, cycles, and the like can be customized. My mom's dosages were never tweaked, but if I had to do it over I wish we could have made a family decision to dial back the intensity once we got the good scans (which were objectively good). Keep an eye on those counts and take any breaks you need--I certainly wish my mom had.

    My thoughts and prayers are with all of you.


    Jeff

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  • lisajo6
    lisajo6 Member Posts: 261
    edited August 2018

    So sorry about your mother. My doctor will not give me the chemo unless my platelets are 100 or over. I was supposed to get it today and I couldn't. He also gives me low dose and tweaks it all the time. Today he felt my liver and said it had shrunk and was soft. He said the chemo was working. BUT he will not take any chances. It seems your mother's oncologist should have lowered her dose and tweaked it. I have to wait 11 days for my next chemo and I am okay with that. How long did she have metastatic breast cancer? Again, I am sorry and agree this could have been avoided.

    Lisa

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  • Passant1
    Passant1 Member Posts: 7
    edited August 2018

    hello,

    I had 6 cycles of carbo/gem after AC+T, i had a regrowth while i was on taxol.

    This combo shrunk the biggest mass from 3.8 cm to 1cm so it worked for me.

    Carboplatin’s main side effect for me was nausea and fatigue but definitely much much less than AC.

    Never felt any side effects for gem but it was very hard on the wbs, rbc and platelets.

    I had two blood transfusions while im on it and my doses were altered weekly

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  • katfuller15
    katfuller15 Member Posts: 25
    edited August 2018

    my doctor took me off Gemzar and added Avastin, Taxol and Carboplatin. For whatever reason, she is not high on gemzar but is high on Carbo. I've had 3 blood transfusions and possibly platelets but my Platelets pulled up quickly. I have horrible ascites so not sure how great my prognosis is looking. My liver is very enlarged and all this occurred in less than a month. I've never had such fast progression. I did try papaya leaf extract for a week and my Platelets bounced back fast. Of course my doctor doesn’t believe in it

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  • AllyBee
    AllyBee Member Posts: 128
    edited September 2018

    Just thought I'd check in and see how everyone is doing this week? Hoping for good results and minimal side effects for you all

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  • katfuller15
    katfuller15 Member Posts: 25
    edited September 2018

    I did receive good news yesterday at my doctor’s appointment. My liver function is improving and the ascites is going away so something is working.

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  • AllyBee
    AllyBee Member Posts: 128
    edited September 2018

    That's wonderful news

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  • lisajo6
    lisajo6 Member Posts: 261
    edited September 2018

    Good news!!!

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  • hhfp
    hhfp Member Posts: 51
    edited September 2018

    My wife was on Gemzar for a period trying to eliminate breast cancer that spread to the brain... same problem, caused low platelets... she had to get 2 transfusions... oncologist took her off the treatment after 6 doses...

    She's now on Intrathecal Herceptin plus Eribulin but condition still worsening... new tumor on left brain causing loss of control for right leg and arm... may have a new met impairing her memory and ability to express her self... I had just started a thread talking about this.

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  • katfuller15
    katfuller15 Member Posts: 25
    edited September 2018

    Lisajo6...I just saw your post on the liver mets and our situation sound so similar. When my doctor had me on gemcarbo I had to skip a lot of treatments due to low platelets/WB. It scared me bc I thought my liver was getting worse and the ascites were awful. I’m now on Avastin, Taxol, Carbo...plus my doctor told me to start back taking Lynparza (a lot I know). Now that the ascites seems to have cleared I feel a pulling...almost like me liver feels heavy but it all could be a sign of healing. My liver is my biggest concern. I’m scheduled for treatment on Thursday so I’ll see if my liver enzymes are still trending in the right direction.

    I’m praying for you and I hope you will be able to get chemo tomorrow.

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  • lisajo6
    lisajo6 Member Posts: 261
    edited September 2018

    Katfuller,

    Thank you for the prayers. I did get chemo. My numbers are better and my liver panel is way better. He says the chemo is working! I have to get this combo every three weeks because of my platelets. That is okay-as long as it works.

    I feel pulling in the area where my liver is also. He was not concerned a bit. I still have a bit of fluid left as I look 4 months pregnant. Please let me know how your chemo goes Thursday. Prayers to you.


    Lisa

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  • katfuller15
    katfuller15 Member Posts: 25
    edited September 2018

    Hey Lisa. I’m so glad to hear you were able to get treatment. I’m on a 1x every 3 weeks also even when she had me on Gemzar. I will let you know how treatment goes for me. I still look about 3-4 months pregnant but I no longer have to get drained. Looks like I finally delivered a baby because I looked about 6 months and I’m small already. I think my liver is still enlarged but I definitely feel much better than a few weeks ago. I’m glad to hear your doctor isn’t worried about the pulling feeling. I’m praying it’s a sign of the liver healing.

    This is quite a journey.

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  • lisajo6
    lisajo6 Member Posts: 261
    edited September 2018

    does anyone get a fever and flu symptoms from the gemzar? I had chemo Tuesday and today has been awfu

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  • AllyBee
    AllyBee Member Posts: 128
    edited September 2018

    Hi lisajo,

    I had my first round of gemzar on it's own on the 4th and felt like i'd been hit by a truck. Sore, tired, runny nose, cough, wisdom tooth playing up (probably not related lol). I thought it would be easier than the gem/carbo combo, but it hasn't really been.

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  • Anastasia04
    Anastasia04 Member Posts: 2
    edited September 2018

    Hello, ladies.

    My mother just finished 5-th cycle of gem/carbo.

    After 3-rd cycle CT scan show improvement in lung(pleural fluid) and bones.

    She totally failed on Xeloda, it was awful 3 weeks in hospital with draining around 3 liters of fluid from right lung.

    After only one gem/carbo fluid stopped accumulating. (I hope it will never come back, again).


    She had flu like symptoms with temperature around 37.5 C(till 3 rd round) , chest pain, back pain, headache, runny nose, cough.


    Blood is a biggest problem. Our onc gives us Filgrastim for blood counts.

    Good luck for all.. we need it.


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  • lisajo6
    lisajo6 Member Posts: 261
    edited October 2018

    rHas anyone experienced low back back pain and joint pain from carbo/gem? Also, I can only get it every three weeks because of my platelets tanking a lot. I have it in my bones, liver, lymph nodes. I was first diagnosed in 1998. any success stories with this combo?

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  • Anastasia04
    Anastasia04 Member Posts: 2
    edited October 2018

    Yes, it causes lower back pain and joint pain.

    My mom takes some painkillers (like Tylenol).


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  • katfuller15
    katfuller15 Member Posts: 25
    edited October 2018

    If you have liver mets, you want to minimize your Tylenol intake.

    Kat.

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  • lisajo6
    lisajo6 Member Posts: 261
    edited October 2018

    i had chemo Tuesday. my joints, neck, back sides are so sore. it has never been like this. no nausea. Terrified i am nearing the end.

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  • katfuller15
    katfuller15 Member Posts: 25
    edited October 2018

    No Lisa you are not near the end. It’s more than likely the side effects from the treatment. How is your bloodwork? Liver enzymes levels

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  • AllyBee
    AllyBee Member Posts: 128
    edited October 2018

    Hi Lisajo,

    I had chemo on Tuesday as well, just the gemcitabine dose. This round has been particularly painful. I have this awful pain right between my shoulder blades. I'm really hoping it's just a chemo side effect and not progression, I hope that's the case for you as well. I've seen a few people mention aches and pains as side effects.

    I have scans coming up next week, so I guess i'll know for sure then.

    Hugs

    Ally

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  • lisajo6
    lisajo6 Member Posts: 261
    edited October 2018

    I read that aches and pains are from the gemzar. Even my neck hurts when I turn it! I hope you are doing okay

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  • Geeper
    Geeper Member Posts: 164
    edited October 2018

    I've been in Gemzar/Carbo since Jan. and my body hurt two days after chemo. I get flu like symptoms and sleep it off for two days and back to normal.


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  • AllyBee
    AllyBee Member Posts: 128
    edited October 2018

    Lisajo,

    I'm doing pretty well, most side effects have stopped and back to nearly normal energy levels. Really struggled at the gym yesterday but feel much better today for going. It's my week off this week so hopefully things will continue to improve. I hope you are feeling better too :)

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  • katfuller15
    katfuller15 Member Posts: 25
    edited October 2018

    allyBee,

    Such an inspiration to hear you are still going to the gym. That was the story of my life the gym, biking, jogging and I haven't been able to do any of it in the last few months with this last progression. It's never been this bad since getting the stage IV diagnosis over 2 1/2 years ago but I feel myself getting strong every day and possibly can go back to work soon and at least start back walking to a slight jog to build my stamina back up.

    Ally/Lisa I'm lifting you up in prayer daily. This is noeasy journey but it is obvious that we are more than Conquerors!

    Stay strong and I appreciate seeing updates from you two. I had treatment yesterday and haven't felt the side effects yet.

    Katrina

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