Hodgkin lymphoma

Affected by Hodgkin Lymphoma? Join this group to share experiences and ask questions to people who understand what you're going through.

Neutropenic

mariyah
Posted by

Hi, 

Has anyone had experience with being neutropenic or neutropenic sepsis. I was admitted on Wednesday night with neutropenic sepsis, I have been put on Pipercillin/Tazobactam and G-CSF to stimulate neutrophils as my count was 0.0 and has remained so for the last 3 days even with injections. So far they have found nothing in my blood cultures (3 days) and they did swabs and it came back as I got a common cold. 

How long were people in hospital for and how long did your body take to recover? Any experiences with low neutrophils? 

Thanks

moomy
Posted by

Hi Maryah, 

sorry I can’t be of much help here, daughter did have times when her neuts were zero, going through stem cell transplants, but they did recover.

yours are probably struggling as a result of the sepsis, but that’s being treated so as you improve then your counts probably will, too. Your team might have to think about antiviral meds. 

Hugs xxx

Moomy

mariyah
Posted by

Thanks for the reply Moomy, its so disheartening when they tell you every day is still 0. I just want to get home to my daughter who is 2.5 and isn't allowed to come and visit! I developed oral thrush so now I am on antifungal medication and bacterial antibiotic so they are really covering everything! Fingers crossed my levels will go up soon! 

moomy
Posted by

I hope you recover fast too, it’s tough being away from all you love! 

But do get well enough first......

hugs xxx

ps, just read your profile and I’m intrigued as to why you’re on R-CHOP and not ABVD? Which hospital is Treating you? 

Moomy

mariyah
Posted by

Thank you, its only frustrating as I feel fine in myself!

I have no idea why they are treating me with R-CHOP, its the one they mentioned at diagnosis and other haematology patients that I do my cycles with are on variation of R-CHOP,  I am being treated at Kettering General Hospital. xx

beanpug85
Posted by

Hey Mariyah,

I'm so sorry to hear you have neutropenic sepsis! I too had it during my cycle 2 of ABVD and I remember being terrified. Even though it feels scary, it's actually pretty routine to them, so long as they get you in there early on antibiotics. I was kept in for a week in the end as my CRP was very high (I don't think I had got in as early as perhaps I could have done) and so they had to try a few different antibiotics. They never found the source of my infection, but I had been suffering terrible mouth sores at the time. 

It took me several days to get my neutrophils back up from 0, so don't worry, it will happen! I think it may have taken me 4 or 5 days and then they shot up really suddenly. When your body has been under so much strain it burns through platelets and blood cells and so doesn't reboot your neutrophils as quickly as it could.

I'm back on chemo now so I'm on all alert for sepsis again, checking my temp all the time!! I know it could happen again though and once you know the signs, you will know exactly what to do. Just FYI, it doesn't happen very often on ABVD so I was quite unlucky. Not sure about RCHOP. Interesting that you are on that chemo, I always thought it was for non hodgkins, but maybe it's to do with the other health issues you have been discussing? ABVD is the gold standard for HL, but they must have a valid reason for not using it. All the best with your treatment and your recovery. You will be out from hospital in no time! 

Helen x 

Kaito
Posted by

Hi I was admitted to hospital with sepsis neutropenia after my first cycle. My count was 0.1 and I got a temperature that kept spiking. I was in for 5 days to complete the course of IV antibiotics. 

It was frustrating because I actually felt ok and there were no signs of any infection or illness. All the bloods and swabs came back with nothing. I never found out what caused it. After the IV antibiotic course was completed, my count had risen to 0.5 and my temperature stabilised so I was allowed to go home. 

It was upsetting for me as 8 months prior I had bought tickets for me and my 9 year old daughter to go and see Professor Brian Cox live (she loves space). I was in hospital and so couldn’t go with her. 

Hopefully after a few days you’ll start to see some improvements and your count slowly increasing 

Thehighlander
Posted by

Hi again and first a ((hug)) and sorry to hear you are having these problems.

Neutropenic and Sepsis have been a large part of my journey with my R-EPOCH and Stem Cell Transplants both during and post treatments.

It unfortunately just takes time to get through. The Sepsis is holding the recovery of your neutrophils back but lets look for this to improve quickly so you can get home to your little one.

The longest I was in hospital with Sepsis and Pneumonia was 7 days...... I am allergic to Penicillin so these this always took longer - but my Stem Cell Team say that I mat not noe be allergic but have not got the courage to do the tests.

I was on G-CSF for a good month after my SCT and they were making no difference but everything just decided to restart over night.

remember when you first mentioned that you were on R-CHOP rather then ABVD I was surprised...... but what do I know.

Lets look for you to be able to escape ASAP xx

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

mariyah
Posted by

Thanks! I am in day 5 and can’t wait to escape! They forgot to do my bloods this morning so just waiting for them to be done and then for the results. Fingers crossed my levels have gone up! 

Everyone seemed surprised that I was R-CHOP but everyone in the chemo haematology session seem to be on a variation of it.

Reanswolf
Posted by

At diagnosis my 15 year old lads Neuts were 6.1, after 2 x initial OEPA treatments (similar to ABVD) they dropped to 0.2 as he had a very bad cold and cough, so was hospitalised for 48 hours as a precaution. They came back up to 1.1 though and have been1.8 but they fluctuate.

In fact everything fluctuates except his HB hemoglobin which is nearly always 122/123. Well so far at least.

WBC was 9.6 at the start, then as low as 5.0, then 6.7.

Platelets were 240 at diagnosis, then dropped to 160, then 328, then 256.

Nick