Neutropenia after chemo

[dwolden]

Blood work yesterday my husband is again very neutropenic after several months of slightly improved numbers. We are 10 months after 6 cycles of FCR. Oncologist rather grimly speculating his bone marrow may not recover. So very very discouraged. He has had shots of neulasta in the past and responds well to it, will have another next month. Not a long term solution.

[Justasheet1]

So sorry to hear this. What else did the Onc say?

Jeff

[dwolden in reply to Justasheet1]

Thank you. He said we must go to the hospital immediately if David runs any sort of fever. He cannot explain why the neutrophils remain so low and thinks the fludara is the culprit, but other than another shot of neulasta and the prospect of a THIRD bone marrow biopsy, he didn't have a lot to say.

[splashsplash]

have you had any GCSF booster shots? My oncologist also said my platelets would never recover but I'm proving him wrong and a year later after FCR they're nearly back up to normal.

[Justasheet1 in reply to splashsplash]

Thank you for that reply to this very concerned wife. I love to hear words of encouragement like yours SplishSplash! Carry on the fight and I'm glad you're proving him wrong.

Jeff

[dwolden in reply to splashsplash]

That is good news. David has had GCSF twice, once during chemo and once eight months after. He does get a good response to the neulasta (that is the brand they used). He is also getting IVIG now will try it every month instead of every other. We continue to hope that his bone marrow will recover. Your news is encouraging.

[Miee]

I am sorry for your neutropenia, but I want to encourage you. It is known that rituximub causes a sudden neutropenia in 3 month ~ 12 month after a finish FCR treatment. If this is your case, you will recover. Really I hope.

Miee

[dwolden in reply to Miee]

Thank you so much. The oncologist tends to hang it on the fludara, but I have read that about rituxin as well. We just want it to pass!

[evanz in reply to Miee]

This is my situation right now, WCC suddenly 1.2 after completion of FCR 15 months ago. My haemo says it is because of the Rituxan. I had attained normal counts before this so am now having to revert to taking all of the extra care required to avoid infections until my next blood test and hope that there will be some improvement.

[Oleboyredw-uk]

I finished FCR in Dec 2012. Some of my levels were low as expected and have gradually been returning to normal range. My ALC as an example dropped to 0.2 and has gradually crept back to 0.9 over the intervening tests (last one Dec 2014). To be honest, I dont think my Neuts ever got really low was having Neulasta injection every month as part of the FCR cycle (day 8 from memory).

Never give up,

Rob

[dwolden in reply to Oleboyredw-uk]

You are very kind thank you for your reply. David's numbers sometimes improve a bit and then fall again which the oncologist finds mystifying. We wonder if it is not related to fighting infection.

[Corin850]

Hi. This is obviously very worrying and stressful for you and your husband. How old is your husband? What level of remission was achieved with the treatment? I am a man, married with 3 kids and started the CLL journey aged 38, in 2007....now 46. First year 2007 was FCR six times. Achieved minimum residual disease but being relatively young cll was probably relatively aggressive in me and I became ill again in January 2011, actually with ebv. Treatment with fcr started again in June 2012. Since then I have had several treatments....different types and the new drugs are excellent. In January 2013 I had 0.0 neutrophils for eight days. Basically over the last eight years I have used gcsf on and off for about three! It's really good stuff, boosts neutrophils if your bone marrow is working at all. The main thing I want to say is that your husband will most likely recover from neutropenia. I have done several times. Also if you are new to cll you have joined at a pretty good time, if that's possible! Top doctors are saying that it wont be long before cll patients can have a normal life expectancy. Try to enjoy every day together if that is possible. Do something nice if you can. Until you see the doctors again!

[Justasheet1 in reply to Corin850]

Being diagnosed at 48 y/o, I cherish inspirational posts like yours Corin850.

Jeff

[Corin850 in reply to Justasheet1]

38 jeff

[dwolden in reply to Corin850]

Thank you for the wonderful reply. It made me cry, but with gratitude. David is almost 65 and was diagnosed two years ago. He had 8 months of watch and wait then the 6 months of fcr. The oncologist tells us there has been a complete response but with an "incomplete recovery of the bone marrow." David has had lots of scans and tests that show no active cll. He has had now two lung infections requiring treatment (first time steroids, this time antibiotics) and a case of strep throat. He has had gcsf twice and had a good response both times, will be getting another shot at the end of the month. Thank you again for sharing your experience, he is determined to bounce back.

[nancyjo]

you should feel inspiration. I was 45 when diagnosed and after 4 rounds of FCR my body went toxic and then i did 8 weeks of Rituxin. I was neutropenic for almost a good two years taking antibiotics and gaining my strength back, yet feeling nothing las bad as i did on the chemo. my treatment lasted for ten years and now i am ibutrinib. ibutrinib has many side effects for me but nothing like being on chemo. your husband will get through the neutropenia and what i gained was to trust my body, know that it was doing its very best to slowly recover from some very powerful drugs. i learned to love my naps and to love that i was taking care of my body and helping it to health. there is a point, maybe the point, where we all need to enjoy this day and not focus so much on the next. yet, it has taken me 20 years to learn this lesson and i remind myself daily, hourly, minute by minute to rest, nurture, enjoy each moment, for it is in that moment that we acknowledge life. so happy for your husband and you and loving the kind of partner you are on this magical mystery tour!

[dwolden in reply to nancyjo]

Thank you so much for sharing your experience. It is very helpful to me and my husband. His doctor has said David's response is very strange "idiosyncratic" is how he says it so to know that others have had trouble and kept going after fcr is so wonderful. I wish you the best on your continuing journey.

[Corin850 in reply to nancyjo]

45 and managed twenty years. Brilliant. Was 38. 8 done so far.

[kaymack]

I coped well with 4 cycles of FCR, finishing in Dec. 2013. Then over the next 8 months, I had 3 episodes of infection and panocytopenia and I had to be hospitalized and treated with GCSF, blood transfusions and antibiotics. A bone marrow biopsy reading at the time, suggested I may have myelodysplasia. I got well though, and now have gone six months with steadily improving blood counts. I am now within the normal ranges for all counts and I'm feeling great. Apparently, a percentage of people suffer from late-onset cytopenias during the year post FCR. I must have been one of them.

[aussiejo in reply to kaymack]

Question - what is GCSF ?

Hope you continue to feel great

[kaymack in reply to aussiejo]

Hello Aussiejo,

It is Granulocyte Colony-stimulating Factor. It helps your bone marrow produce a type of white blood cell called neutrophils. They are the first defence in fighting infections. I am in New Zealand and was given pre-filled injections under the trade name Zarzio Filgrastim, but Neutropen and Neulasta are other common trade names. At one stage, my neutrophil count was too low to measure and I was discharged home from hospital giving myself daily injections for 3 weeks. At that stage my neutrophil count all of a sudden jumped to 7 and it was discontinued. My count settled down to around 1.9 for some months, but a year later, it is now 4.7 (normal range 1.5 - 7.5 x10e9/L).

Wikipedia gives additional information: en.wikipedia.org/wiki/Granu...

[Cllcanada Top Poster CURE Hero]

Granulocyte-colony stimulating factor, G-CSF, stimulates stem cells in the bone marrow to produce grauloctyes...

G-CSF also stimulates the survival, proliferation, differentiation, and function of neutrophil precursors and mature neutrophils, a type of white blood cell, that makes up about 60-70% of your white blood cell count.

en.m.wikipedia.org/wiki/Gra...

Also see

en.m.wikipedia.org/wiki/Neu...

Chris

[aussiejo]

kaymack and Cllcanada

thank you for the informative reply.

Its a big learning curve, I understand letters can make it easier for some people.

But for the less educated, I truly appreciate this site, personal experiences and your quick replies.

[Ros123]

I am so glad to have found this information. I had two cycles of FCR and then ended up in hospital where my neutrophils were down to 0.3. Where after losing count after 34 bags of Iv antibiotics and 2 of blood they could not figure out where infection was. I was unaware of being ill and assumed symptoms were caused "normal" tiredness due to chemo. My further 4 cycles have been cancelled and the Consultant has decided to leave further treatment at the moment. She has said that she thinks it was a reaction to the Ritubimax. I am presently getting bloods checked every two weeks and due an appointment on Tuesday. She has said I am likely to get about 18 months before I will require further treatment and there are new drugs coming up. Are there any questions I should ask? Great to find some information. Is this a common reaction? Felt like I was the odd one out.

[AussieNeil Partner Administrator in reply to Ros123]

Neutropenia is a common occurrence with pretty well all treatments for CLL and is countered by G-CSF injections, such as Neulasta or Neupogen or similar. You should also have been given prophylactic treatment to reduce your risk of infection during treatment. Neutropenia can occur without an infection; but because these white blood cells are your primary way of fighting infections, you are at high risk of infections when they are low. Do you know your latest neutrophil count? Can you disclose where you were treated?

With only two cycles of FCR, your remission may not last as long as it would have if you'd been able to have more, but if you do need treatment later, you should now qualify for newer drugs, perhaps via a clinical trial.

You may experience what's called late onset neutropenia, which is part of why you are being monitored via blood tests every two weeks. That can occur anywhere up to a year after FCR treatment.

Neil

[Peggy4]

Hi dwolden. Isn't it uplifting to hear so many useful replies? I don't understand (yet!) a lot of what's being said but find it great to see so many people taking time to reply with help and support. it's always comforting to know we're not alone. Peggy.

[Ros123]

Thanks for your reply Neil. I did have to look up prophylactic lol. I was on antibiotic, anti fungal, antiviral and I had a bad flare up of gout, so back on meds for that. Can't remember what bloods were but will check on Tuesday. I forgot to say that I did have a CT scan which they said was "good" which was reassuring to hear. Consultant did say that if it had been life threatening with regard to the CLL she would have tried another lower or slower dose, but felt that it was better to wait and see if the neutrophils would pick up. Thanks for your input. Great site for info.