Carboplatin and gemcitabine

Hi everyone. I'm not a frequent blogger, though I frequently access all the amazing insight and support from this site. So, here's my story. At 45, 6 and a half years ago, I was diagnosed with stage III high grade OC, despite having been under the doctor for the previous year with 'non-specific' symptoms, I think you know where I'm going with that. I had surgery and carbo taxol. 2 and a half years remission. Recurrence. Repeat drugs. Just under 2 years remission. Repeat drugs plus avastin. 10 months remission. Now into carbo gem, Ca125 after one treatment a pleasing 80. I would be very interested to hear your experiences on carbo gem generally. I was looking forward to seeing lots of you at the Members Day but it conflicted with my new treatment, however my husband, another unsung hero, went for me and gathered lots of interesting intelligence from the speakers - gives us hope I think that real science and development is happening that can help us all beat this wretched disease. Onwards! Merylx

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  • Hi Meryl,

    I am sorry you missed members day, sending you best wishes love x G x

  • Hi, Sandra,s experience with gem/carbo was not good. Found it hard to tolerate and only managed 3 cycles before a scan showed disease stable, no shrinkage even though CA had come down from 88 to 38. (no growth either which is only plus point). Decision was that she had become platinum resistant and therefoire watch what happens next over next month. After the first cycle of gem/carbo she picked up a high temp and neutrophils were too low. Admission into hospital for antibiotics for 4 days, 2nd cycle delayed by a week, CSF injections thereafter to boost WBC. She was pleased to stop the chemo on 3rd cycle. Within the month off CA rising again, no scan yet and is currently in hospital having a chest drain.

    A friend on same treatment also found it intolerable, stopped treatment after 2 cycles, not working and her disease continued to spread. She now having her bladder removed.

    Sorry none of this is good reading, some people do tolerate it and get some success from it. We did,nt and we are moving back onto Caelyx next week. Love Paul xx

  • Hi Meryl,

    I am currently on carbo/gem as 4th line chemo. It is working really well for me ca125 has gone down from 1318 to 380 after only two treatments and tumors in neck I can feel are reducing.

    I have tolerated it well but do feel sick a lot of e time so will be asking today for different anti sickness tablets. Bloods have all been fine.

    I do get tired but I had to have fluid drained from around my heart back at Easter so started this treatment not as strong as previous treatments.

    You have done well having long remissiions between treatments. I hope this works well for you. Keep us updated.

    Hugs Jackie xxx

  • Dear Meryl

    I enjoyed reading your blog. You'd done admirably well with your long remission times. Let's hope the new regime works well for you. I hope you have a positive experience with it. I have to say that Jackie looks fantastic. She joined the merry band who met up the evening before members' day and I had no idea she was on chemotherapy - let's hope carbo/gem is going to get the job done without you feeling poorly.

    I'm really sorry you weren't able to get down to London in May. For my part I didn't find it particularly helpful except Professor McLeish's presentation which was brilliant. It was an incredibly long day so probably better you didn't go if you weren't feeling so well. I might well have spoken to your husband as I did talk to one man who said he was there on behalf of his wife and I thought that was incredibly supportive.

    Let us know how you get on.

    Loads of love xxx Annie

  • I did not get on well with carbogem . It hammered my bone marrow and so I had constant delays because platelets were too low. It caused severe muscle weakness ,which I really hated and also seemed to cause a personality change (not for the better! In my case it was not effective. Ca 125 did not go down and then started to go up so I abandoned this treatment halfway through . I blame the bad effects on the gemcitabine , which did not suit me .I had taken single dose carboplatin twice previously without any of these effects . Many women get on really well with gemcitabine , (it's just not for me personally )which shows we are all different .

  • My wife had it for 3rd line treatment and whilst quite a harsh regime she kinda tolerated it ok. She was meant to have 6 cycles but because it was continuing to be effective, she ended up having 8 cycles.

    Her CA125 reduced very well during it, unfortunately within 3 months of stopping it came back again.....but that said she only ever managed 5 months 'remission' for the 1st line chemo, so she never really had any real break regardless of chemo.

    Good luck x

  • Like all regimens, the oncologists know the response rate. We were told that gem/carb has a good response to 25% of patients, another 25% get stable outcomes the remainder it doesn,t work at all. Of course ther is no way of telling which % you fall into until its tried.

    We are about to embark on single agent caelyx next week which only has a 10% chance of success. Hope this helps love Paul xx

  • Hi methyl

    I am currently on carbo/gem. I am 43and was diagnosed with stage 3c 18 months ago this is my second line treatment after carbo / taxol first line. Had to stop taxol after two lots. I have found it difficult after first treatment gem caused flebitis in arm and rash. This delayed treatment and I got very down. I then got low white cells and had injections too boost which made me very ill. Not a good start. Since then have gem over hour with side arms. I have had sore arms and have to be carful I don't do things that are hard on arm as they tend to get sore and swell. I have had trouble with white cells and now have second gem on day ten and they seem to recover by then. After cycle four reds dropped and had to have blood. I have found the regime very tiring and struggle to do much after cycle five. Now for good news after cycle four my ca125 has dropped from 160 to 94. Hope this helps don't hesitate to ask any questions

    Sharon

  • Hi everyone, many thanks to all of you for your candour, openness and support. From your feedback I think it underlines that we are all different and seem to have different responses and reactions to similar drugs, part of the ongoing frustration surrounding cancer treatment. So far my side affects have been limited, so much sympathy to those of you who have a different experience. I saw my consultant today who told me my ca125 was 21 after one treatment, however as we know like interest rates marker levels can go up as well as down! So battle on, as we are all doing, and thanks Annie for your note about Members Day, my husband remembers you, and said you were a very nice lady! So a big shout out to all the husbands, partners, family and good friends who go through this thing with us, you are amazing!! Love Merylx

  • Ps. Sorry I meant 21 after second treatment. Late night:) Mx

  • Hi Meryl I am having carbo/gem as 2nd line chemo due 3rd cycle next Friday, I am 69 and have secondary Pelvic and Peritoneal I have the usual sickness and fatigue quite bad on the 3rd day post treatment for about 3days, I then have top up of gem 7days later I have to give myself injections to improve my WBC . I am also having swelling and painful arms, after 3rd cycle and scan I may also start Avastin, ? Being I also have Crohn's disease. If I can help you further, you only have to ask. You have done well hope it continues. Love Btte x

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