Update

Hi everyone, sorry have not been around much but have still been following updates.

Have been pretty unwell last few weeks . Been in hospital a couple times as needed drain due to ascites. Started chemotherapy again last week of carboplatin/gemcitabine and avastin and to be honest been floored with it. Wonder if anyone on this regime has found it hard going.

Love

Ally

12 Replies

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  • Dear Ally

    I'm sorry to hear things have been tough. I started the same prescription on 29 October with a top up of Gem the following week. When I went for my onc appointment the day before my 2nd cycle they said my white blood cell count was very low and I had to have a week's delay to have the second lot. They think I also have a drug-induced problem with my liver which they're looking into.

    I was also exhausted. I think in hindsight I should have rung the hospital to say how tired I was and they might have checked my bloods before they did. I'm going to have 5 injections to administer in the five days prior to treatments in future.

    Hope this is helpful. There are a few of us on relapse taking the same prescription and it really is helpful to compare notes and ask questions of one another.

    Sending loads of love xxxxx Annie

  • Hi Annie - so sorry to hear about your tiredness and your bloods - and you started off on such a roll racing round town (didn't like to say this might be a bit too good to last!).

    I thought you might be interested that I'm using the injections too... (right from cycle 1 because I struggled with the bloods just on Carboplatin and had several delays and blood transfusions). I started off with 7 and this was increased to 10 for cycle 3 as neuts going down rather. So there's elbow room in how many. I think there's also inconsistency in when in the cycle is best, judging by stuff I've read..I'm taking mine from day 5 onwards, but I am on the chemo once on day 1 and then 3 weeks off model, which might make a difference.

    I'm also trying to dietary boost, as I've realised in normal times I'm at the lower end of the normal ranges. I doubt whether this will overcome chemo but I'm taking Floradix ( thanks to the woman on here who mentioned it) and blackstrap molasses for the Hgb and having an egg for breakfast and lots of kale for the WBC.... what's the betting there'll be no difference when I have my next bloods done!.... But I don't feel as tired as I have done with my last two rounds of chemo. Desperate times call for desperate measures ( including eating liver, ho ho) ... I wonder why it's not routine practice to advise people to try and boost their baselines before they start chemo?

    All the best and don't fight the tiredness - resting is what you need to be doing!

    love Chris

  • Dear Chris

    Thanks so much for all your advice. It's really helpful. Without knowing any better I've had a craving for liver and kale. I didn't know these were good. I have Floradix in the house too so shall try that.

    It's reassuring to hear your experience of having a low WBC and that it can be managed. I didn't give up on the trips to the museum but went to the V&A and took it quietly looking round a couple of galleries , taking plenty of rests. I hope to go back next Monday afternoon after the bloods, scan and onco appointment. I haven't felt so tired this week but haven't rushed about too much either.

    I'll send an update once I know what's going on next week. xxx love Annie

  • Good that there was some improvement - I forgot to mention that I do get a rash from the injections - gets worse the more there are, but any calming ointment seems to help with them - I've been using aqueous cream recently. Hope all goes well next week and enjoy the V&A! love Chris

  • Hi Ally. As you know I am in carbo/gem regime and started 8th november, and am in agreement with you - completely comatose most of the time, horizontal is the best position lol. On my weeks break this week, so hoping to get up some energy levels for the weekend. Avastin starts Friday week. Trying to eat well so I don't have Annie's problem, but I only live 6 miles from my hospital, not 100's. Have as much rest as you want, bugger to the housework etc. Love n hugs Izzy xxxxx

  • Hi Izzy, sorry to hear you've been feeling unwell, hope you're feeling better soon, thinking of you,

    Love Kaz x x

  • Hi everyone thanks as always. Annie hope you are doing better. My world appears to be revolving around the sofa and the bed in no particular order but helps share similar experiences. Was just wondering Is there a few days that you are we'll between cycles as cant imagine going through this for months

    Love

    Ally

  • Dear Ally,

    Just wanted to send you my good wishes, I know what you mean about sofa and bed... I am horizontal most of the time. Love x G x

  • Hi Ally

    I had this combo for my last treatment (now on diff. one) and it gets better - or did for me. I found that after about 5/6 rounds I began to have more energy and could actually do a little more than I had been able to before my relapse was found. I really hope this will be the case for you. Meantime, try to go with the flow and do what your body is asking you to. I think in retrospect I tried to hard to fight it and made myself feel worse in the process!

    All the best

    Monique x

  • Hi Ally, hope you are starting to feel a bit better, thinking of you and best wishes,

    Love Kaz x x

  • Thanks everyone . Hope you are doing ok Gwyn. Thanks monique encouraging to know things will get better and hopefully just need to hang on in. Thanks for all your best wishes . Online shopping is now my best friend I think

    Love

    Ally xxx

  • Good luck with your treatment. Thinking of you.

    Love,

    Eileen xx

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