Having come off my trial for Niraparib because of PET scan showing recurrence I started my first of six carbo / caelyx chemo sessions on June 15th. Went to have my second on Friday but neutrophils too low 0.83. Sent home & will try to have second session this coming Friday. Very disappointing, feel I've fallen at first hurdle. Have liver lesion left behind after my debulking surgery March last year, it has grown. Any of you had problems with neutrophils dropping? x Pauline xx
Carbo / Caelyx low Neutrophils: Having come off... - My Ovacome
Hmm, I had my first Carbo/caelyx on Tuesday last week and have been warned that neutrophils may be an issue. I think it’s reknowned for reducing them and I guess delaying it is to keep us safe, but it’s so frustrating. I hope all is well this week and that you can get back on the routine.
Best wishes! Ali x
Thanks Ali, seems like we are at a similar stage. I see you've had nausea & dizziness, I did too. Apparently you can get injections to correct the low neutrophils, so feeling more positive. Keep in touch as I'll be interested to hear how your treatment goes. Have you got six sessions four weeks apart like me? Cheers Pauline x
Hi Pauline, yes I am having the stuff every four weeks, although I’ve read many stories of delay due to low neutrophils etc. How did you conquer the dizziness? I’ve been able to eat, but just feel nauseous occasionally. It’s a week now and I’d quite like the dizziness to go away now. It will be interesting to share stories so I’ll post how I’m going.
Best wishes, Ali x
Hi Ali, I just get the odd "off balance" issue now, after 5 weeks. I think all the side affects disappear on their own after 2 weeks. Oh . . . just remembered I got mouth ulcers during the 3rd week, these too have now gone. It will be interesting to share our stories, good luck. Pauline x
I’ve not had that combo, but my neutrophils struggled throughout carbo/taxol. I was given filgrastim injections to administer at home and they really helped. It might be worth asking your oncologist if there is anything available.
Thanks for your reply Vicki. I had carbo/taxol 2 years ago, it was a trial so taxol was weekly. Sadly I perforated my bowel on the day of my final infusion. Thankfully it was only air escaped but it meant my surgery was cancelled, I convinced my Oncologist I could survive surgery & finally had it 6 months later (March 2017). Only started the Carbo/Caelyx last month following recurrence, & my Niraparib drug trial was stopped. So over the past 2 year period my neutrophils have been low but not as low as 0.83. Really grateful to hear about Filgrastim injections, I've just Googled it, hope they give this in the UK? Good luck with your treatment. Pauline x
Yes, they should be available to you - I'm UK too My local onc prescribed daily ones to use for about 5 days each time, but I swapped to a private care setting at a specialist cancer centre and was able to benefit from a peglegated filgrastim injection - one super-powered one which was effective for 7 days.
They certainly are available, but they sometimes are a bit slow in offering them, so at your next appointment, I'd ask.
Thanks, I will ask. I had my 2nd session on Monday (23rd July) my Oncologist ordered another blood test rather than wait another week. So just 2 days later & my neutrophils pushed up to 1.53, just made it as they needed to be 1.5 or above?!! Not sure if your haemoglobin drops on Caelyx / Carbo treatment, as 6 days later I feel completely wiped out, feels the same as when hb drops? I won't get another blood test till August 16th, so hopefully they are okay & tiredness will ease off soon? Does Caelyx get rid of ascites too? Only I'm 10 pounds heavier than normal, must be fluid as abdo distended. Another question - does steroids make you ravenous?!! Could have eaten my plate too after my dinner last night??!! Expect that must account for some weight gain? xx
That's interesting - it was 1.00 on my first chemo and I just assumed it still was! I almost never reach that.
Yes, my HgB did drop during it and I had a transfusion at the end - breathlessness and feeling wiped out are symptoms.
Don't know about ascites.
Steroids make many of us ravenous...but as we know it's an illusion we don't eat....ho ho... as if. x
I had the same Wigan in Carbo caelyx from the start ~ ended up having filgrastin injections every time but cld only tolerate 2 days of those: which always did do the job
I also take astragalus drops that are a supplement that help with white cells good luck please keep chin up it’s not you it’s the caelyx combo ! Xxx
Sorry auto typo! Wigan?? Meant “ when on”!!
I love auto correct!! X
Makes me laugh. And here I was think it was yet another term for a wobble.
Have you read a book called the Meaning of Liff by Douglas Adams? It’s like a Dictionary of place names used to mean things - one we use a lot is Exeter - meaning something that is left over when you’ve mended a household thing - then you have to take it to bits again to put it back! There is a definition for Wigan, but it’s a bit un PC even for us so I won’t quote it here!
This morning, I still feel a bit Silesia which means the inability to remember, at the critical time, which side of the boat it is best to be seasick off.
Ramble over, sorry, I blame the drugs. Have a good day all xx
Nice to hear there is something out there to help, are you in the UK? I've taken immune renew in the past (not since diagnosis), I believe that is astragalus? Are you still on the same chemo? Really hope I can tolerate this treatment, having no spleen now doesn't help. Thanks & good luck, Pauline x
I get my astragalus drops from S africa as lived there for ten years but sure you can get quite widely. If I’m the Uk I think Neal’s yard may do but I think it is always one of those things you should ‘check with oncologolgist ‘ as sometimes they are not keen on supplements. I hope you do well and that the caleyx etc does the job as we all wish for this!
I’m in the Uk now so it’s been a long haul but still trying!
All the best
Just sending best wishes! Hope your white cells recover quickly. Your body will do it! I am sure summer fruit & veg will help....they have so many vitamins & minerals in that our bodies need. Lxx
Thanks for replying, sadly I get bowel blockage too, so have to avoid so many of our lovely fruits & veg. I will eat all the ones I'm allowed though. Pauline x
Pauline, I'm curious -- does that include canned fruit packed in water? I'm asking as a general question. Right now I'm off fruit, but the other day I thought as a temporary measure, maybe I should try canned. It's soft. It's processed. I'm really off my food these days.
Thanks. XXOO (I will be see a nutritionist soon. I think the liver mets are the issue, or maybe the blood clots for my lack of appetite. I'm not on any treatments right now.)
Hi Nancy, I'm sure tinned fruit is fine for us. The low residue diet given to me 3 weeks ago by a doctor (spent a night in Hospital high temperature) included some processed food. I'm allowed white bread / white rice / white pasta. Anything wholemeal is out if you are in danger of bowel blockage, also any skins & peel from veg & fruit. It went as far though as saying the summer fruits with pips or seeds are not allowed, & citrus fruits, but strawberries / raspberries could be made into sieved smoothies or juice. Nuts & seeds etc were out too the list is endless. Salad veggies are not to be eaten as they are raw, but an odd portion here & there are fine. The fact I can eat cake & crisps seems bizarre, but I do try to limit naughty treats. I too have liver metastases, they refer to mine as lesions. Going back to tinned fruit I think it's a good idea, I'm going to try some myself, as I have low neutrophils any uncooked fruit & vegetables are risky, & must be thoroughly washed. Tinned fruit will have gone through stringent cleaning in the processing of them? I hope you feel better soon, I've not gone off food at all, always did have a good appetite?!! It's tough isn't it? Good luck, Pauline x
Hugs on the high temperature and hospitalization. That's always crazy worrisome.
Thanks for that list Pauline. I had a bowel resection two years ago and know that white diet well I was allowed mashed potatoes which were a real treat for me. I was able to tolerate more high fibre as time went on (with the colon surgeon's blessings). I was also able to tolerate soup that had some cooked vegetables in it, just not to go overboard. (There is a recipe for Casear salad that one makes in the oven. The romaine lettuce is baked at something like 400 -- I bake it until the leaves are limp yet crispy on the outside. The dressing is good and I use breadcrumbs with thyme/garlic which I sprinkle on top. I haven't thought of the recipe in a long time. This is giving me good ideas!
The canned fruit is processed, and as I recall, most of the fruit's skin is peeled, but I'd keep to the fruit cocktail for me (and stay away from things like canned pineapple). Gosh, now that we're talking about it, I'm starting to crave a cold bowl of fruit cocktail.
You are very lucky you haven't lost your appetite. I've never been off my feed, always was a good little eater It's so much better for our treatments when we eat and keep our bodies nourished. It doesn't take much.
Sometimes they call my liver cancer lesions also. I've also got cancer cells on the liver. Hopefully I'll go into a trial soon, meanwhile it's Caelyx for me. Wishing you all the very best in your treatment. Did they figure out what caused the high temperature? XXOO
Delboy4me, apologies for derailed your post. Best wishes on keeping the white cell levels at the normal range. XX
They never did find out why my temperature spiked, I think it was a mild tummy bug? My neutrophils have continued to prevent me having my 2nd lot of carbo/caelyx they were just 0.93 on Wednesday morning, so stopped me having chemo today. My Oncologist advised to get them done again today (over 2 days later) & yay . . . they came in above the required 1.5 at just 1.53 so I'm having my next session on Monday now. When I looked at the Low Residue Diet sheet, canned fruit was on the allowed list, yes pineapple (I love it) is too fibrous I think?! Sorry you had to endure a bowel resection. After nearly 10 hours of surgery March 2017, I expected to wake up to find I'd had a bowel resection, but my fantastic surgeon here in Truro Cornwall, spent two hours taking away cells off the surface of my bowel. The only thing he didn't clear was my liver, & that has more than one place with metastases, seems you know all about that too?!! It's a horrible feeling isn't it thinking "am I blocked" & it is so different to being constipated? I just hate the dreaded NG tube, had it three times now, & with a huge hiatus hernia getting it in place is very difficult, needing many attempts, so I feel prevention is better than the cure, & will do all I can to avoid food particles blocking me. It's like a full time job isn't it? Keep in touch please, I haven't made contact with anyone else who has liver lesions like me, that's my biggest fear right now. Best wishes, Pauline xx
Yes I have had this problem a lot. Often 5-6 weeks between treatments, but fingers crossed so far the chemo is working fine. They can boost your bloods with injections if necessary just after chemo and again before depending on the problem. All best wishes. Sophia x
Thank you Sophia, it's helped to know that this happens to others (not just me). I will ask about the injections if this continues to happen. I was upset that it's occurred after the first of the planned six sessions. Hope your treatment is on track now, Best wishes, Pauline x
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