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Macmillan’s website will undergo planned maintenance from Monday 1 Dec at 10:30pm to Tuesday 2 Dec at 9am. During this time, the Community will be partly unavailable. Members won’t be able to log in or join, but you will still be able to read posts and discussions.
Hi everyone! I'm looking for advice/shared experiences. My Folfoxiri chemo for sigmoid colon cancer has been very stop start due to persistent low neutrophils. I've been suffering from low neutrophils for a couple of years now and the chemo is clearly having even more impact. I'm due cycle 3 tomorrow - already delayed from last week (neutrophils only got to 0.6 and need to be above 1.5) - and I had a 3 week break between cycles 1 and 2 (Also only reached 0.6!) due to the same problem. My oncologist is now lowering the dose of all three drugs by 25% which is making me quite anxious about the efficacy of the treatment plan! I spoke to the oncology nurse just now and my neutrophils are only at 0.72 before tomorrow's chemo. Apparently they're happy to go ahead though if a rapid blood test tomorrow shows they've gone up (even if they haven't reached the 1.5 threshold...)
Has anyone else here had a similar experience? Lots of people tell me delays are normal but is it normal to have every cycle delayed? And is there anything I can do to boost those neutrophils?? The constant schedule changing is wreaking havoc on my family - I've got two young kids and each weekend I have chemo we're trying to arrange childcare help as my husband also works weekends, but it's not always possible to cover this...and my kids keep getting confused about why I'm not having treatment when I say I'm going in for it. Any advice very welcome
Hi SazzleDazzleabd88d I don’t think there’s anything you can really do diet wise to increase your neutrophils? I think there is an injection they can give you called Filgrastim but not sure what the criteria is for it. It’s very common to have your dosage reduced - they start you on the maximum for your height and weight - either for neutrophils or excessive side effects so please don’t worry about that.
I had post op chemo in 2016 (it was done after surgery in those days!) and often had a low white cell count although the consultant commented that it was never very good to start with! I had oxaliplatin and capecitabine - the oxaliplatin was reduced after 3 cycles then stopped after 6 and the capecitabine was stopped after 8.
Hope your next cycle goes ahead and the reduction helps your neutrophil count
Take care
Karen x
Hi sorry to hear you have all those delays - it’s so frustrating and even harder when you have planned things to fit around when you might feel well. I had a couple of cycles delayed but was on CAPOx - so neutrophils were low ( maybe as I had a cold the week before one of the cycles) and also the platelets were low on occasion: they didn’t give me injections but I have read that could be an option so it is worth asking. Mine only had to be 1.0 or above but they did sometimes pop back up even within the 24 hours between blood tests. So maybe ask about the injections. Sorry not much help but wishing you all the best going forward xx
Hi Karen,
Thanks for your reply! Sounds like we have a similar WBC problem! I've been given 3x Filgrastim injections after my first two cycles - I'll check if they can increase those. My third cycle is under way thankfully with the dose reduction...I'm hoping this means some.of the side effects may be reduced or maybe that's wishful thinking
Thanks again,
Sarah x
Hello! Thanks for your reply and well wishes. They've managed to go ahead with my third cycle as my neutrophils are just over 1 - phew! I'll check if they can boost the number of injections to see if it helps.
Thanks again,
Sarah x
Are they not offering you Filgrastim daily injections?. I was struggling with my neutrophils due to already having Leukaemia so low Neutrophils is the norm for me. I now have 5 days of jabs to give myself at home starting the after my chemo.
I am on Carboplatin and paclitaxel so not sure if that makes a difference? I am on a 28 day cycle with 3 consecutive infusions then a week off. It's helped me keep on track mostly. Good luck.
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