So nice to have found this community. I'm two years in to diagnosis and have had BR treatment. Right now, I'm doing well except for persistent Neutropenia (coming up to one year post treatment next month). My doc is a CLL expert in the US but works in a smaller community (Jeff Sharman). Have had Neupogen 3X, 2X and now 1X a week since March 1. ANC running usually between 0.5 and 0.8, occasionally moving up to 1.1 or so and rarely now dropping to 0.4ish. Doc seems concerned that BR may have damaged my bone marrow. Still don't know. BMB may be in my future. (Didn't have one when starting BR because my disease bridged SLL/CLL with lower peripheral ALC....4500-6000. Treatment was started because of the grown of a cluster of nodes that were pressing on windpipe....no individual node was large, but the cluster was. Any ideas of what I should plan to ask my doc when we have a summit meeting on the persistent Neutropenia next Thursday would be helpful. Otherwise, thank you for just being here and available for support and information.
--Anne (Trisomy 12, some good/some bad indicators; Eugene, Oregon)
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BR is Bendamustine/Rituximab (immunochemotherapy treatment) and BMB is Bone Marrow Biopsy (a procedure to examine the state of your bone marrow, where your blood cells are made - in Anne's case, why she has continuing neutropenia). See: cllcanada.ca/2010/index.htm# and check the glossary entries.
Shortcake2- BR- bendamustine & Rituximab. BMB - bone marrow biopsy.
Anne, sorry to hear you are still dealing with side effects of your treatment! I hope Dr S can shed some light on the cause at your next appointment. Being drug sensitive has really been a tough road for you. Wishing you well!
Thanks so much, Rosie. I haven't posted about this much on the forum because the focus is so dominantly on the clinical trials right now. I have had an older initial treatment....missed the Gazayva (sp?) trial by two months.....but I think that was BG? So may have had the same issue emerge.... So nice to hear from you. Thank you!
Welcome, Anne! I'm so sorry you are still dealing with the neutropenia. I wish I had answers. I'm sure that Dr. S will know what to look for next. I just wish you were reporting that the issue was resolving and life was getting back to normal, whatever that is.
Thank you so much pkenn. I just don't really know what to expect or what questions to ask. Guess it's another moment of having to practice patience and hope.
What was your ANC (Absolute Neutrophil Count) range before treatment do you know? Did you need Neupogen to boost your neutrophils during your BR treatment? (Prior to treatment, neutropenia can be caused by one or more combinations of a struggling bone marrow due to CLL infiltration, an enlarged spleen and a degree of auto-immunity. These should be resolved by treatment. Presumably this was the case for you?)
Neutropenia is caused by pretty well all CLL treatments, both chemo based like BR and the newer non-chemo treatments. For some of us, it can take a while for our bone marrow to recover - as appears to be the case for you. Once the CLL cells (as well as the healthy B-cells unfortunately) have been sought out by the Rituximab and destroyed, the Rituximab can stay present in your body for 6 months or more and you can also get Late Onset Neutropenia sometime within the first year after treatment. With FCR, a higher incidence of Late Onset Neutropenia has been observed if patients needed to be given a G-CSF drug like Neupogen to boost their ANC during treatment. I guess that could also apply with BR.
Here's a paper from 2010 that reports on the incidence of neutropenia with Rituximab treatment:
It's fairly technical, but if you read the Conclusions section, you'll appreciate that back then they weren't sure of why it happened.
Jeff Sharman probably has more up to date information than this, but I expect that he has been waiting to see if your neutrophil count automatically recovers (which is usually the case) before investigating further, which I expect will involve that bone marrow biopsy.
Neutrophils (and platelets) don't survive long after release from the bone marrow, so if your bone marrow is struggling to make them, it quickly becomes obvious. Different experts give figures from a day to a week survival time for neutrophils. Given it takes about 10 days to make new ones and they are the most common white blood cell, you can appreciate why it can be challenging for your bone marrow to make them.
How have you been going infection wise while you've had the neutropenia? I presume you've been extra careful to avoid infections and being careful with your diet?
I've been living with an ANC in the range you're experiencing since my diagnosis over 7 years ago and I'm still in Watch and Wait, so I know how important it is to look after your health with neutropenia. Hopefully you'll spontaneously recover soon - probably just when you are about to have that BMB!
Thank you so much, Neil. It's so great to have someone look at this thoughtfully! You really cheered me today.
My ANC was normal before treatment with BR. It crashed after the 2nd dose of BR (the second month into the treatment regimen, May of 2015). Subsequently, I had Neulasta after the 3rd and 4th BR dose. Then the ANC wouldn't come up for 8 weeks and so I only went through 4 doses of BR, completing cycle 4 about August 1. Sharman didn't want to pound the marrow so he convinced me to stop treatment after just 4 cycles (third cycle delayed about 30 days because of 0.3 ANC). MRD performed on peripheral blood indicated MRD- in October 2015.
Once ANC was near normal (mid-October), I had no further labs until I developed a horrible bronchitis. Had a bronchitis for about 6 weeks starting late December and then got in to see Sharman February (my PC wouldn't do labs....another story). Dr. Sharman had me take a medical leave from work to recover and gave me prophylactic antibiotics. It took 12 weeks total to recover from the bronchitis: late December-early March. Then I returned to work but ANC has been low since about March 1 with Neupogen to keep it above the 0.5 range. I teach at a large university and was able to teach a 10 week-term in Spring, but then caught a cold and that took 3 weeks to overcome. All this time, since about March 1, I've had Neupogen 2 and 3X a week; backing off occasionally to 1X a week; ANC seems to stay about 0.7.
I have heard of one person living pretty normally with CLL and an ANC of about 0.7 but don't know the details of that (through the grapevine account). Sharman seemed concerned in late May. He was on vacation for last half of June and I was on a research trip the first week of June. So July 14 will be our next appt. He ordered labs and Neupogen if ANC was below 1.5 (1500); it has been below that every week now since June 1. So the low ANC has persisted despite Neupogen since about March 1. August 1 will be 12 months since BR ended. Here's hoping I'm just recovering slower than average
Again, thank you VERY much for your kindness! --Anne
Oh and I forgot to thank you for the link to article...I do read a lot in the journals (though I haven't been 'up' on chemistry since 0rganic Chemistry in college). I wade through and can understand the general ideas, size of cohort, methods, conclusions pretty well. The molecular and genetic details are pretty dense and I haven't applied myself to unravel that very much. Just a little....I read about Scientific American level Really appreciate the link. It will help me prepare for my appt. Have a great weekend, Neil.
Sounds like you'll be having a discussion about late onset neutropenia with Dr Sharman and what you can do to protect your health until your bone marrow recovers. As you no doubt appreciate, without a blood test, you have no idea that you are neutropenic, so you just have to take additional precautions to minimise your risk of exposure to infections.
Do you know how healthy your Immunoglobulins are and whether you are eligible for IVIG transfusions?
Your college level organic chemistry and technical reading level will stand you in good stead if you want to read further about this. It still takes a while and sometimes repeated readings to wrap your head around new technical terms though...
Incidentally, my average ANC for the past 4 years has been 0.7. I ended up taking early retirement due to frequent infections and fatigue and stay healthy by avoiding social events, etc, so don't envy you trying to stay healthy working with students.
I also have Trisomy 12, I had 6 BR infusions ending in April. I still had 1 lymph node under my arm that still had some uptake and slightly enlarged. I had 12 radiation treatments on it. My PET last week showed no glowing areas.
I continue to have low WBC and slightly low RBC. The blood counts have changed very little in the last 3 months. I continue to wear a mask when going out. Another problem I have is red bumps that come up mainly on my head and face and a lot of itching. I am taking a medication for the itching.
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