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

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

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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

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

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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...

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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 :-)

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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.

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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

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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

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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

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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

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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

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

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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.

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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

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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.

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

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