CLL Support Association
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BR and neutropenia

Hi, I’m 49 yo female, T12. Diagnosed in 2013, w&w until I got to stage IV six months ago and was started on BR. All the results returned back to normal after the first chemo (lymphocytes came down from 170 to 7). Completed 4 sessions now with only 50% bendomustin. However, after the 4th session, my neutrophils have become very low (0.1), so the 5th session has been now postponed twice (2x 2weeks). My doctor said, if the neutrophils do not improve in the next two weeks, he will stop the treatment. I’m worried about the remission time if I don’t complete all 6 sessions. Has anyone had this happen to them?

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Hi. Due to neutropenia I only had 4 cycles of B & R. 16 months on very fatigued but in reasonable health.

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Thank you Jacksc06. I see you have recorded your journey. Will take a read, it’s very helpful

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Hi Victoria. Hope it helps, Obviously no two journeys are the same.

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I had six sessions of F and C at half dose and the normal dose of Rituximab . I still had bouts of neutropenia but I am still in remission after 5 years.

Cheers,

keepfit123

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That’s great to hear and may you have many more years in remission! Do you mind sharing what is your genetic deletion/addition?

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At diagnosis I was Trisomy 12 with low CD38.

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Neutropenia is a common side effect of all CLL treatments. The general approach of managing it during treatment is to see if resolves and if not, administer a G-CSF injection to boost production - typically into the skin above the stomach, so treatment can be continued. Commonly used G-CSF drugs are Neulasta, Neupogen, Filgrastim. Has your doctor discussed the use of any of these with you?

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No, he hasn’t. I’m in Canada, can only assume that those injections are not covered. He delayed the treatment and said would stop it if the neutrophils don’t improve in 2 weeks. Do you think that it would be better for the overall remission to get the injections and continue the treatment, providing that it’s available in Canada? My blood results, beside neutrophils, have been fine.

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The injections are expensive, (I think about US$300 per injection), but it is also an ineffective administration of treatment if it is not completed sufficiently to give you the best chance of a long remission. I gather it depends on which province in Canada you're in as to what coverage you'll have. Cllcanada or another Canadian will hopefully be better able to help here.

Neil

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Thanks Neil, I will raise the issue of injections with my hematologist and will check the price here in BC

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One more question Neil, do you know what would be the longer possible gap between the chemo treatments for the overall treatment to be effective? Waiting for the neutrophils to raise I will have 2 months between the 4th and the 5th session; would more than that even make sense?

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I'd ask that question of your specialist when you ask about the possibility of having G-CSF...

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Ok thanks

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Funding is by province.

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Thanks Chris - I just checked my extended medical and Neupogen is covered and Neulasta only with a special authority.

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Hi Victoria:

I am through 4 rounds of BR with hopefully two more to go. Early on my hemoglobin dropped to 5.3 and my neutrophils plummeted. I was very sick and could barley function. As part of round two of BR I was given a shot of Neulasta on the third day of my treatment. My counts still were terrible but about a week or so later my counts came back up and I felt much better. I was given another shot of Neulasta on the third day of my third treatment. I did not receive a shot as part of my fourth treatment as all of my blood counts came back into normal range. I looked up Neulasta to understand what it was and found that one shot of Neulasta costs north of $5,000! Expensive stuff but I’m certainly glad the drug companies invested in this drug. My doctor mentioned that he’d like to give me 6-rounds of BR but it is dependent upon how I handle these later rounds. My fith BR treatment starts a week from Monday. I wish you well in your treatment. I’d ask the doctor if Neulasta is appropriate for you. Asking the question certainly wouldn’t hurt anything. Good luck!!

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Hi Hope, thanks for your reply, it seems we are in the similar situation related to the treatment. I also had a very rough start, not with neutrophils though, but with platelets and hemoglobin. The marrow was affected 90%. After the first treatment they improved and had no problem with them since. However, the neutrophils are a problem now. Will check my extended health insurance to see if the injections are covered.

May I ask, how come you didn’t go with FCR? I couldn’t get it due to having red blood cell antibodies.

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My disease started as SLL. My BMB showed my bone marrow had 92% cancerous cells. I was prescribed BR treatment instead of FCR since my disease was non-mutated as opposed to mutated. In the US only mutated patients are prescribed FCR. I hope you are able to continue your treatment.

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Ok, thanks. I don’t even know if I’m mutated or not. The FISH only showed T12. Thanks again

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Hi, I am also T12. I have not had the test IGHV mutatated or unmutated either, but I have read that mutation status can be inferred by testing for ZAP 70. Positive for ZAP 70 over 20% is said to usually mean unmutated. That is what I understand. Maybe you know your ZAP status?

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Hi there fellow T12. I’ve also read that about ZAP 70, but don’t know that one either. Sigh...

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Does anyone have data I’ve not found on why BR is considersd better by some in the USA than FCR for unmutated?.

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CLL10 trial.. but never looked at IGHV mutation status... its very new clinically...

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But didn’t CLL10 show FCR was better efficacy than BR? And if it wasn’t looking at mutation status why are some USA doctors giving BR for unmutated?

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Age, comorbidities etc. BR,have been used before Imbruvica (ibrutinib), IGHV mutation had little relevance until a few years ago. MDA used FCR in all CLL excluding 17p for many years...

cll-nhl.com/search/label/be...

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My doctor’s original plan was FCR; however, we discovered that I’m Coombs positive and he switched to BR

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I’m almost 4 year remission on BR. Given to me frontline.

I’m unmutated 11q-

BR is generally better tolerated than FCR and I was told doesn’t cause the mylosuppresion that FCR can cause. I had my eyes looking down the road as I’m 55 y/o now

Jeff

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Ok. Gotcha. Toleration as a reason I can understand as the studies say it’s better tolerated.

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One more question: those of you who used Neulasta or Neupogen, what were the side effects? Thanks in advance

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Hi Victoria, I had mild pain in hip and thigh bones. Just took Tylenol. The nurse administering the inj recommended Claritin but Tylenol did it for me. Hope this helps. Good luck.

Dave

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Thank you Dave

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This happened to me last year, but they didn't stop treatment. I had to be extra careful to stay away from infections and increase hygiene regime. Be a where it can and does continue after treatment is completed. Certainly the following 6 months were bad for me and even now 12 months after treatment I still have to be very careful, as I pick up chest, sinus and eye infections regularly. The very best of luck, regards Eric.

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Thank you Eric, yes, we have to be very careful. I’ve read about the neutropenic diet and trying to follow the rules. So far, I only had a problem with ear infections. I’m very puzzled with my doctor’s comment to stop the treatment...

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To be honest, my doctors did consider stopping treatment, but in the end decided to suspend B&R until my next treatment was due. This was to check on my blood count a month later. It did recover so they continued with the treatment and in the end I did get the 6 doses.

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I still have two more weeks and hope the neutrophils will recover. I’m so glad it worked well for you

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Hello. I had only 4 treatments of BR. They had to stop due to a DVT that developed in my right leg and low neutrophils. Mine were as low as .25. Remmision lasted for me about 12 months. Then symptoms returned. They then put me on Imbruvica. It took about two years for my neutrophils to return to a 1.25 which was much better than the .25. Best of luck

Dave

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Hi Dave, thanks for your reply. It seems you were also not offered injections to increase neutrophils. May I ask what country you’re from? My doctor said if neutrophils don’t go up we should stop the treatment and I should “think about the big picture” as I still have Imbruvica available. I’m curious why some doctors decide to proceed with treatment and others stop...

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I live in NY USA

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Victoria I was periodically on Neulasta which raised my neutrophils to normal levels but only lasted a couple of weeks before falling back to .25. Eventually it started to go up very slowly. It took a while before it reached the 1.25. My Doc. An amazing man was happy it reached this level.

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Thanks for clarification Dave. It seems that the injections raise neutrophil level only temporary; eventually it is still up to the marrow to do it on a permanent basis. If that’s the case, I’m beginning to understand my doctor’s decision.

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My husband became severely neutropenic, zero in fact after his first infusion of BR. We waited almost 6 weeks got the second infusion and the third and the fourth each with Neulasta following it. After the fourth infusion his neutropenia was so severe it lasted five months even with the Neulasta shot. Our doctor also said no more chemo. He is currently on in Imbrutinib and his numbers are trending towards normal. It was a terrible time when he was so severely neutropenic as he was restricted from all crowds, meetings, etc

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Yes, I hear you Kathy, my neutrophils were 0.1 after the last treatment, then 1.2 and now 0.6, so I’m being extra careful with food, meetings etc. Otherwise, all the results are good. All the best to your husband.

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Victoria - Stopping treatment using FCR or BR is not unheard of, especially now that there are other options. It seems that it is usually after the third or fourth round. I would ask your doctor to explain his thinking. Sometimes a doctor will stop treatment if the patient has had a basically good response except for neutrophils to avoid damage to the bone marrow. Ask what his view of the big picture is that he wants you to think about. He may feel that Ibrutinib is a safer option for you long term.

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Exactly one of my thoughts, thank you. I’ve left a message for him and called my chemo nurse to inquire about the neutrophil injections. She said that there are side effects of course, some possibly quite serious.

What if the chemo treatment for CLL is a matter of past and I’m insisting on continuing the treatment and risking a marrow damage. Is it perhaps better to get over with it as the first line of defence and move onto the newer drugs. So many things to ponder...

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One thing I've learned over the years is to not try to ponder too many things on my own. It's easy to miss asking questions at appointments when we are stressed, but that doesn't mean we can't think things through a bit and then take our concerns back to the doctor - advice I should take myself, sometimes.

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hi my husband was given Zarxio which is generic version of neupogen I think it is less expensive.

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Thanks for letting me know

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