Hi everyone I just want to vent a bit. This morning I've found out that for the third week running my neutrophils are too low for chemo. This should have been my last one. I've had filgrastim injections, eaten so much papaya and leafy greens as well as sweet potatoes but still not high enough. My chemo started back in January but there have been so many delays due to low neutrophils that I am still going. My onc took me off the Caelyx after the first 3 because I reacted badly so I am just on carboplatin.
My main worry is that unless I can have my last chemo and then get my neutrophils up to at least 1.5 then I can't go on my holiday to Turkey on 23rd August. The thought of the holiday was keeping me going.
Thank you. Rant over
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Welshandproud
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Fingers crossed that the neutrophils make a recoverythat the chemo continues and has the desired effect and you get to .Turkey. Let us know how you get on. Chris
Oh I am sorry, I know the feeling. It’s so strange logically to want to be well enough to tolerate the poisoning! I really hope your neutrophils decide to recover and you can get your holiday. It’s probably hotter here at present than Turkey. Good luck and there’s always a last minute.com for a more local holiday (which may be less stressful!) as a last “resort” (pardon the pun). A xx
Thank you ArtGreen.i know it is strange to want to be well enough to get poisoned but this strange disease really changes our way of thinking. I enjoyed your last resort pun. It made me chuckle. Xc
Well that’s still a few weeks away...let’s hope the neutrophil fairy is listening because you need your holiday! I take it they wouldn’t delay cycle 6 until you are back?
Thank you Lyndy. I wonder what I have to leave under my pillow for the neutrophil fairy. Perhaps a papaya!! I'm going to ask about delaying cycle 6 but I don't think they will because they want me to do the icon 9 trial. I doubt I will be accepted anyway after all of my delays. Still I'll try xx
I was so upset also about my counts if I wasn't able to get the treatment. The Dr said there's no making it up.i couldn't finish my last treatment.i thought I was going to die and not beat it...it's been 2 yrs I'm here writing you.hold on to your HOPE and be STRONG!!! 💖
Cynthia you have really given me so much hope. I am so worried that unless I have the chemo my cancer will be back quickly. Knowing that this hasn't been the case for you has made me feel so much better. Thank you and may you continue to be well xxx
What a nuisance !! Looking forward to a holiday really keeps us going . As Lyndy suggests , could you delay the 6 th Carboplatin or , in fact, just stop at 5 ? I did that as I was rundown after 5 & they said it’s not in tablets of stone to have 6 . I then went to Crete & restored myself. Fingers crossed for you .
Thank you Mary. I just assumed that I had to have the 6 but it looks like that's not the case. I'm so pleased you were able to restore yourself in Crete. Hopefully I will be able to do the same in Turkey xxx
Hi welshandproud. My wife has been on folfiri/avastin chemotherapy and was hospitalised with neutrophilia because her white blood cells were dangerously low. She stayed in hospital for 5 days to get her stabilised. She still needs her last 2 sessions of chemo and when she has her next session, there will be a time lapse of 8+ weeks between sessions. Have a wonderful holiday in Turkey. We live in Cyprus and it is a beautiful part of the world. Good luck with your treatment and a full recovery.
Thank you so much Klorakas. I am so sorry to hear about your wife's struggles with low neutrophils. It just isn't fair. I am now almost 6 weeks between cycles. Hopefully this week will happen.You are very lucky to live in Cyprus. We have had many family holidays in both Northern and Southern Cyprus. A beautiful island with lovely friendly people xxc
How I know that feeling - pesky things. Mine eventually got high enough for me to have my last chemo but it was three weeks late. I am sure you will get there and be able to have that holiday you are so looking forward to but if they don't behave I would delay the chemo and go. The therapeutic value of a holiday can't be measured. Good luck xxxx
Thank you so much Jenny. I'm glad you got your chemo eventually. I do feel tempted to delay but I won't be back until September which is probably too late. I'll ask though xxx
Hi! I know the feeling, I have been on Carboplatin for six cycles and low neutrophils have caused the process to be much longer than expected. I have been given chemo if neutrophils are at least 0.9, and they have not been over 1.5 since second cycle. I am going to Mykonos in early september and haven’t given any thougts to neutrophils, but maybe I should? Is it the doctors that are saying they need to be over 1.5 to travel? Whenever my count is over 1.0 I feel am somewhat safe. 😬
I hope your bone marrow makes a quick recovery! It is so frustrating not being able to do anything to increase it. Someone told me it helps to sleep and rest a lot which I at least felt was nice to hear in contrast to all other advice on exercise and keeping active I have been getting. 🙂
Sleeping and resting sound good!! My oncologist won't let me have chemo if my levels are below 1.5. This seems to vary around the country. She says that I am at too much risk of neutropenic sepsis if travel with low neutrophils. I would just have a word with your consultant. The cut off point might be different. Thank you for your post and I hope that your bone marrow goes into overdrive soon xxxx
We have so little control over those numbers and sometimes they go up before I suspect they will and other times they won't budge when I am sure by how I feel, all is back to normal. Fingers crossed for you and may those neutrophils start behaving as they should! oxox Judy
Sorry to hear this, stress you could do without. I found that 24hrs could work miracles. They would do my bloods on a Thursday and would report mine were low, then on the Friday take them again. Each time they jumped up and chemo took place. Do they only take yours once a week? Hope you get to finish your cycle soon.
Having just come back from a holiday, l hope you get away on your yours!
Thank you for that. I'm pleased that you got away on your holiday. They only do bloods once a week with us and the chemo only on a Friday I'm afraid . Hopefully they will have risen for my appointment on Thursday xxx
Hi. I had very low neutrafils on my 2nd chemo and it took 22 weeks to do 13 chemo's, plus I was on a lower dose of carbo/taxol after 3rd chemo. What has worked for me is making chicken pate at home. You can buy chicken or beef livers. I don't eat meat so I just use chicken livers. I buy half or full kilo, (very cheap) fry with red or normal onion, add herbs, salt and pepper and blend. Put in fridge for 2 hours before eating and don't keep for more than 3 days. Eat every day with carrot, celery, put in salad, healthy seaweed biscuits etc.
It really worked for me. My neutrafils starting rising within 2 weeks. Plus it's really tasty and quick and easy to make. You may want to give it a try.
Thank you so much. I've just got back after a weekend away but I will make the pate. I'm so pleased it was so effective for you and Iam more than willing to give it a try. Thank you xxxx
How frustrating for you! Keeping my fingers crossed that your neutrophils behave so you can get your next chemo, but if they don’t, I’d be tempted to go to Turkey anyway. A change of scene can be balm for the soul and help our bodies in so many ways.
Ugh, so irritating! Had the same problems with neutrophils, even a year after completing the highest level was 1.1 but then I read about Beta Glucan. Last blood checks they came back at 3.4 💃no flu for me when entire family came down with it, no chest infection that hit the ship on recent cruise, please give it a try when you finished, or even before! Good luck and have a great holiday
It is a natural supplement mostly extracted from yeast but I use one from algae. The manufacturer is Pure Synergy, it is called Beta 1.3D Glucan. I take 2 a day first thing in the morning (dosage does depend on weight and how sick you are so maybe start on 3 or 4 for a month) and wait 30 minutes before eating or drinking anything. You can buy it online. I hope it works for you as well as it did for me, please let me know. Best of luck 🌹
Hello xx i did weekly chemo as my first line and missed loads of chemo due to low neutrophils. I worried about it but my husband said isnt that what it’s supposed to do so maybe its just working extra well?? So i changed my thoughts on it and decided it was a good thing and it seemed to settle down 🤔 anyhow i got 4.5 years between chemo so something worked well. Good luck to you and maybe stress plays apart, just tell yourself holidays can be re booked and maybe easing the pressure will help?
Phew Sian. How frustrating. Do you have the injections following each chemo to boost the white cells? My mum had Lenograstin. She was supposed to have 5 but could only tolerate 3. She ended up in A&E once after the fourth one. Her second line chemo was Caelyx and after the third one her hands started to crack up and were so red and sore. Her feet were sore too and other areas. But the onc unit reduced the dose by 20% and things got better. Sounds like you've had to give up on the Caelyx. I hope the Carboplatin hits the spot. Mum had Carbo/Taxol for third line and it seems to have zapped her various little tumours which were in similar places to yours - near pancreas, aorta, diaphragm, certain lymph nodes. She 's been stable for just over two years now with a CA125 of 9. You may have seen my post about her latest positive results. Keeping fingers crossed that things improve and you can have your last chemo. When will you go for you next check on the neutrophils? Jane XX
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