Still neutropenic 5 months post FCR :-( - CLL Support

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Still neutropenic 5 months post FCR :-(

Sucee
Sucee

Hi all

I am wondering if anyone else who has been through the FCR regime has had issues with neutropenia for such a lengthy period of time, post chemo. It's really getting me down now. I still cannot return to work, in fact I may have to resign within the next few weeks as it's now been 11 months since I started treatment. I feel so much better in myself - I think my energy levels are almost back to normal (but then I'm not working so not really sure!), but I certainly don't need afternoon naps now, which is great.

My bone marrow biopsy came back with good result - no CLL cells. I am thinking my neutropenia is due to chemo toxicity, and am worried for my bone marrow.

Any advice would be appreciated, please xx

29 Replies
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Cllcanada
CllcanadaTop Poster CURE Hero

Yup... the timing is about right.. there is something called Late Onset Neutropenia, (LON) and a number of the CLL members here have experienced it.

Its caused by the rituxan but also a few have experienced it with obinutuzumab... and a couple with ofatumumab...

It should be monitored,... talk to your doctor, I don't recall anyone having been treated with G-CSF for it.. things like neupogen, neulasta etc al

~chris

Indolent
Indolent in reply to Cllcanada

Is this treatable??? Is this with obinutuzumab as a monotherapy?

AussieNeil
AussieNeilAdministrator in reply to Indolent

Late Onset Neutropenia does seem to be a side effect of the CD-20 monoclonal antibody therapies, including obinutuzumab. The difficulty is that while expensive G-CSF injections can be used to force bone marrow production, eventually (we hope) the bone marrow will recover and work without being forced. I gather we don't know the long term effects of continually forcing a reluctant bone marrow to make neutrophils...

Sucee
Sucee in reply to AussieNeil

Thanks, Neil. That's exactly what my haematologist says..."we're hopeful..." I'm starting to feel a little anxious about this. I had hoped to being well on the road to recovery by now. Probably very naive of me...

Hope you are well :-)

MsLockYourPosts
MsLockYourPostsVolunteer in reply to Indolent

A friend who got obinutuzumab as monotherapy, like I did, starting just ahead of me, did have an episode of late onset neutropenia a few months later. That was in 2015, so the drug was newer, and the doctors at her local hospital (not her treating hospital) were stumped at first. I'll have to go back to see whether she mentioned a specific treatment.

Thank you. My haematologist is not, at this stage, going to treat my neutropenia, and I would be very reluctant to use G-CSF injections again, forcing my BM into production. I just have to continue to be "hopeful". Seems to be the story of my life currently! X

Sucee
Sucee in reply to Cllcanada

Thanks, Chris. I am being monitored, with weekly blood tests. My neutrophils are all over the place currently, always remaining well below 1.0. Whilst I had G-CSF during chemo, it's not being offered now and I'm not keen on the idea of continually forcing my BM to produce neuts, as Neil says below.

My problem is I have been neutropenic since chemo finished. Is that still regarded as LON? I was wondering if anyone else has had the same, and for what time frame? I'm feeling like my life is really on hold and after 11 months it's becoming difficult to see the light at the of the tunnel....

Thanks for your reply. X

Hi Sucee,

I finished FCR in November 2016 and was neutropenic during treatment and afterwards.

I was hospitalised with an infection in December 2017. Since then I have had weekly injections of neupogen and eprex. I also have immunoglobulins every three weeks. I hesitated replying to you because I don't want to scare you and I suspect mine is not a normal case. However, problems with bone marrow following chemo do occur and I think one should be aware of them.

Hopefully your bone marrow (and mine) will start behaving itself correctly in the near future !

All best,

Chinchilla

Sucee53
Sucee53 in reply to chinchilla

Thank you, chinchilla, for replying. Were you neutropenic for the entire year before you were hospitalised in Dec 2017? Your Hb was also low at this time too, given you’re still using eprex? Are they going to give you a trial period free of the injections to see if your BM has recovered? It is worrying, isn’t it! I know there’s a very fine line between getting a decent remission and chemo toxicity. It sounds like it’s toxicity that we have...would you agree? Xx

chinchilla
chinchilla in reply to Sucee53

Yes, I was neutropenic for the whole year. I was also anaemic after FCR and was given a blood transfusion. My platelet counts were also down.

Yes, I imagine they will give me a drug-free period to see if things are working. My next appointment with the haematologist is in May so I'll probably stop the treatment then unless my blood results suggest otherwise.

Yes, this situation is a direct result of the toxicity of FCR. The haematologist has told me that the treatment worked very well on the CLL.

And finally, yes, it is a bit worrying but then, this whole CLL thing has been a bit worrying and you learn to live with it, I suppose. However, being a total wimp, I think I'm more worried about having infusions, BM aspirations and all that stuff !!

All best,

x

Sucee
Sucee in reply to chinchilla

Thank you, Chinchilla. All the very best to you, too. X

My husband has been neutropenic for 3 months after only 4 infustions of BR....another chemo treatment for CLL......they took a Bone Marrow biopsy and his CLL is now in 80% of his bone marrow....the chemo did not work.....He just started Imbrutinb this week. They did give him Neulasta to boost his numbers during the infusions, but the last one idid not work...He does have 11Q deletion which is not favorable to chemo...but we needed to start somewhere. Make sure that your bone marrow has not been suppressed or damaged....that was my question to our doctor.

Sucee
Sucee in reply to kathymac52

Thank you for your reply, kathymac52. Hoping your husband's journey continues well after a rough start...it never ceases to amaze me how different people's journeys can be with this disease .X

I received 6 doses of FCR and I thought it took 6 months for my neutropenia to resolve. However, I just found copies of my bloodwork and I was neutropenic for at least a year after I finished FCR. I still worked and luckily remained healthy throughout that time. I was worried also and saw my CLL specialist who suggested giving my body a few more months to recover before doing more testing. Luckily, my neutrophils returned to normal. I have the 11q deletion and never had any elevation in my WBC- I had enlarged lymph nodes prior to treatment along with low platelets and RBC.

Sucee
Sucee in reply to Jomary8505

Thanks, Jomary8505. That's very reassuring. Pleased everything is going well for you :-)

ABP45UK
ABP45UK in reply to Jomary8505

Thanks jomary 8505. I am 9 months post FCR (and had to have GCSF bone marrow boosting injections throughout) and fretting a bit that neutrophils consistently dropping at 3,6 n 9 monthly blood tests...so late onset neutropenia but reassuring to know that if I am patient enough they might still recover.

Hi Succee

I was just reading about your neutropenia last year. Has it resolved itself now, or did you have to have any treatment?

I am 7 months post FCR and neutrophils are consistently falling. Last time they were 1.1. I was neutrophenic throughout FCR. I still struggle with fatigue too, so not working.

Really hope things are much better for you.

Mandy

Sucee
Sucee in reply to Mandy56

Hi Mandy

I'm sorry that things are still tough for you. I have just had a follow-up appointment with my haematologist, and it's the first time, post FCR, that all my bloods are in normal range (including neutrophils). It's now 2 years since I commenced treatment, so the late onset neutropenia took a while to resolve! My fatigue started resolving about 6 months ago, and I am back to full shifts at work, but still require rest on days off. Generally though, I feel great. My haematologist didn't want me to have any treatment for my low neutrophils, as he didn't want to "force" my bone marrow into producing blood cells, so we just had to wait until things righted themselves.

I hope this gives you a bit of confidence that things will come right in their own good time. Be kind to yourself and listen to your body - rest when you need it, is all I can advise.

Wishing you the very best, and don't hesitate to contact me if you need an ear!

Warmest regards, Sue from NZ

ABP45UK
ABP45UK in reply to Sucee

Hi Sucee. I have only just read your really helpful posts recommended following my posting yesterday that I am worried by late onset neutropenia LON) as my neutrophils are dropping roughly 4, 3, 2 at 3,6 and 9 months post chemo. I too had GCSF injections during FCR. But I am cheered by fact your neutrophils eventually picked up again. Hope that's still the case for you.

Sucee
Sucee in reply to ABP45UK

Hi ABP45UK, it's all such a worry, isn't it. Yes, I think my neutrophils are still ok...I'm still working in an acute assessment unit at our regional hospital, and don't seem to pick up too many infections, so assume I'm doing ok still. xx

ABP45UK
ABP45UK in reply to Mandy56

Hi Mandy 56. I posted yesterday that I'm a bit worried neutrophils steadily dropping 9 months post FCR. Reassuring to read Succee's neutrophils eventually picked up. Wondering if yours are picking up yet? Probably we both need to wait a bit longer?

Mandy56
Mandy56 in reply to ABP45UK

Hi, sorry to hear that, but I am sure they will start to recover. Mine finally have! The last couple of months they have been starting to creep the right way. Last week’s blood test showed 0.9.

I googled the best diet to improve them (lots of green and beans) plus an hour’s walking each day and that seems to have helped me.

How long is it since you finished FCR?

ABP45UK
ABP45UK in reply to Mandy56

Glad to hear your neutrophils are thinking about picking up at last. You are a month ahead of me I think. I am 9 months post FCR but just concerned that my neutrophils that were healthy throughout FCR and before are now steadily falling away. But, I gather from this site, sadly not from my haematologist, that this is quite common hence the name, late onset neutropenia. Hopefully I just need to be patient and eat those greens and beans and hope they stop falling away. I am still very fortunate to have 2 so at the bottom end of normal. I just don't like the idea that they are falling 4,3,2, at each 3 monthly blood test and so fear that I am now slipping into the neutropenic range.

Mandy56
Mandy56 in reply to ABP45UK

I wonder if the chemo is just continuing its work and this is the evidence.

East to say, but try not to worry and fingers crossed the next result is an improvement. Xx

Thank you so much Sue and I’m so very pleased your blood results are back to normal. Xx

Sorry, that should have read that my neutrophils are 1.9, not .9! I get confused!!! At their worst, they stopped to something like .4. I was lucky though. Through staying away from crowds and loads of hand washing, I haven’t succumbed to many infections throughout the neutrophenic months.

I have just read your post yesterday. Of course you will worry, this is a horrible scary thing we’ve been through, but your body is getting stronger and you’ll build on that. Xx

ABP45UK
ABP45UK in reply to Mandy56

Hi Mandy. Delighted you are at 1.9 not 0.9! (Not least because if yours were 0.9 I was feeling guilty about moaning that mine were bang on 2!) These numbers are all so important. The best bit is that, finally, they are creeping up for you.

Have to say I too had low neutrophils. At 4 months of FCR everything was fine, then at 6 they were already down and continued going that way. 2 months after finishing FCR I had to be admitted to hospital for 14 days as they were so low, I collapsed.

I forget the details as it was 2014 but I had to have multiple transfusions as I had become so weak.

My then consultant simply said a year or so later "I wouldn't treat you in the same way now"Eh?

Even now I am on monthly IVIG sessions. I had progressed to 6 weekly in the winter and a 3 month summer break but last year proved I was not able to stay well on my own.

My thoughts are with you.

ABP45UK
ABP45UK in reply to ccm47

Sorry to hear what a rough time you have had but thanks for sharing. Hope monthly infusions keeping you on track.

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