Last weekend I picked up a serious infection and was told I was Neutropenic. Neutro's were 0.8 and they would have preferred a reading over 1. I am 5 months out of Chemo, has anyone else had similar trouble and what did you,
or your doctor do about it. I was advised to stay in hospital for 3 to 4 days and declined due to the dirty state of the hospital and deemed it to be safer at home. I was treated with strong antibiotics and the infections seem to have cleared up, though I am still getting tired. I have to see my consultant in 10 days time, but any advice on what to do or ask would be appreciated.
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Eric70
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Hi Eric. I had an experience with Neutropenia, ended up in hospital for 7 weeks in a really bad way. Biopsy's. blood tests & very strong antibiotics. I was discharged around the beginning of April last year & am only just beginning to get over the fatigue. Its still a battle to get out of bed in the morning but i find if i keep moving its a little easier. Wishing you well.
Thanks Jack. I knew you had similar problems and it is a worry after 6 months of Chemo and I thought I was doing so well. I am on the mend now and due for a check up in just over a week, so I'll see what they say then.
It sounds like you have developed Late Onset Neutropenia, which can occur with Rituximab and Obinutuzumab/Gazyva up to 12 months after treatment ends. Your specialist may recommend G-CSF injections to boost your neutrophils or just monitor them to see whether they recover. Meanwhile you need to be very careful to reduce your infection risk and take care with your diet: healthunlocked.com/cllsuppo...
I've been living with neutropenia significantly lower than yours for some time while in watch and wait and my doctors and specialist prefer me to avoid hospital unless I absolutely need medical attention requiring admission. So I reckon you made a good choice avoiding a hospital admission.
Sorry to hear you have been so unwell and I can understand what you mean about the hospital as I felt the same when admitted for an upper respiratory infection back in December 2016. My neutrophils have never recovered since my chemo (FCR) finished last July and remained hovering around 0.2 to 0.3. Just before Christmas I started on GCSF injections, a low dose twice a week, and have had an amazing response with the neutrophils shooting up to 5 last week. It may be worth your while asking your consultant if they think you would benefit from these injections. All the best and hope you are fully recovered soon. Holly
I have just been discharged from hospital today, after being unwell last week and having my bloods checked. My Neutrophils last Thursday were 0.0 so my haematologist wanted me admitted over the weekend, and have intravenous antibiotics. Thankfully I work in the unit I was admitted into, and whilst I don't like being an inpatient at all, I was very well looked after! Today, with Neuts up to 0.14 I was allowed to come home, but only because I am an RN and "sensible", and I'm returning in the morning to have further bloods and follow up.
I finished 6 rounds (minus 2 days secondary to a febrile illness) of FCR chemo last October and haven't had my bloods checked since Nov last, until I did so at work a fortnight ago, when I was feeling more well than I was last week. At that stage my Neuts were 1.7, so I doubt they've actually bounced back from chemo. My haematologist thinks the neutropenia could be a response to sepsis in the context of bone marrow with poor reserve (most likely of 4 possibilities). Rituximab can cause a neutropenia, as Neil states, which can be delayed. My haematologist believes it would be unusual for neutropenia to develop 4 months after finishing chemo - but is definitely possible. Given I've not had my bloods checked since my post chemo follow-up in early November, I have no idea if I've been neutropenic the entire time or not! The 3rd possibility is that it could represent an autoimmune neutropenia due to CLL.
As I remained without a fever for 24 hours before discharge, and the infection was clearly improving with treatment, I don't need G-CSF at this stage, I am told. I will find out tomorrow if they're thinking of doing a BMB for ? auto-immune neutropenia.
I'm constantly fatigued, but have been really since chemo finished anyway. I have been told it can take 6-12 mnths to start feeling "normal" post chemo. I can only say I am so looking forward to that!
Many thanks for your reply Sue. It does sound as if my illness is very similar to your own. I am getting better now, but still tired and I see a senior consultant a week tomorrow.
Your haematologist may be interested in this past ASH poster on the prevalence of Late Onset Neutropenia. I wonder, given the increased likelihood if patients need G-CSF injections to get them through FCR treatment, whether you needed G-CSF injections?
Hopefully this is all you have and you'll recover promptly. It helps when you are an insider!!
Thanks, Neil. I will definitely show the Consultant at work this graph, in the morning when I have my follow-up. Very interesting (and frightening?) reading.
I hope you're right...I was so looking forward to being "chemical-free" and getting my body healthy again, without all these nasty wee interventions! Oh yeah, being an insider definitely helps...
I hope you're well. It looks pretty warm over there at the minute...it's bad enough here; the humidity we are experiencing is so unusual and a sign of increasing global warming, for sure!
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