Gone Neutropenic before Final FCR - ARGHHHH - CLL Support

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Gone Neutropenic before Final FCR - ARGHHHH

Marie-54 profile image
7 Replies

Had my bloodwork done today in preparation for my final FCR treatments starting Monday. Drat - my neuts went to 0.4 (normal is 2.0 to 7.5) and WBC went down to 1.5 (Normal is 3.5 to 10.85). I have been postponed for at least a week. They do not see a need for injections at this time if I do not come down with a fever. So - any suggestion guys what I can do to help get those neuts up to over 1.0 by next Friday morning when I go in for bloodwork again?

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Marie-54 profile image
Marie-54
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AussieNeil profile image
AussieNeilPartnerAdministrator

Just be patient... :(

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toAussieNeil

I agree, be very careful about food handling avoid deli anything, and restaurants.. wash you kitchen with bleach and hydrogen peroxide wipes atleast twice a week, no fresh vegetables cook everything well...

You counts will come up in time.. the G-CSF injections are very expensive and often not used unless you go febrile...so monitor your temperature and get to the emergency if you spike a fever...

~chris

Marie-54 profile image
Marie-54 in reply toCllcanada

I have avoided deli and restaurants for the entire 5 months that I have been going through the chemo. Everything is cooked well too. What I would not do now for platter of cheeses and some rare meat. I was counting down the days to my final treatments on Mon,Tues,Wednesday. Guess it just proves the old adage - don't count your chickens before they hatch. I am already over the disappointment and it is a reminder that we must always be watchful.

The thing that got me the most, was that I feel better that I have from even before chemo started. You never can tell !

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toMarie-54

The challenge with being neutropenic is that you have absolutely no indication that you are at risk - there are no symptoms (well until you succumb to an infection). Think of it in terms of a country protecting itself from invasion. Not having to support a large number of armed forces is actually the best outcome for the country - no financial outlay or provision of food and accommodation, training and so on. They aren't missed until they are needed - and then it becomes very challenging to build up a useful armed response that will successfully and quickly repel any invaders...

Neil

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toAussieNeil

Very good points Neil.. a bit like Britian in 1938...

I had no idea I had zero neutrophils at the end of November, I actually felt quite well, then a small dry cough turned into aspergillus pneumonia in two days and I had 6 bowel movements the next day.. which for me is quite odd...

Then the following morning I awoke to a full bladder, but couldn't urinate, I had 4 bowel movements by 2pm and by 3pm summoned the paramedics, for a month long stay in hospital in quarantine ... with C.difficile and pneumonia, which I still have 3 months later.

I never had a fever.. it was normal always to everyone's total amazement... The urination issues were thought to be related to nerve damage caused by my recent chemo immunotherapy. Unfortunately the antifungal drug and Flowmax, are contra indicated.. so its an ongoing issue...

So that is my neutropenia...

~chris

Marie-54 profile image
Marie-54 in reply toCllcanada

S C A R Y ! ! !

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply toCllcanada

I never ran a fever with strep throat, pneumonia, or sepsis. The doctor who treated the strep, after seeing my throat, was convinced that something was wrong with his thermometer. He got a different one, then one from a different case, then one from the office next door before giving up. I always warn people, now, not to just go by fever. If you really don't feel well, go with your gut, and get to a doctor or ER. Most doctors also say ER if there is a fever of 100.2 - 100.4 (Not 102 - 104). It often helps to call ahead, if your doctor isn't available, to advise the hospital that you are severely immune compromised. Marie, I hope your neuts. kick in on their own soon! Hang in there! One more treatment! Good that you are feeling so much better!

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