Question - please,and thanks to all for your support this week! Is BMB always necessary before starting treatment?

[Palmetto]

Good news all, husband back in hands of prior oncologist at Baptist. Treating the AIHA with blood transfusions and Rituximab. Discussed if need to treatment would be Venetoclax and Gazyva - hurray! However, since my one issue with this doctor is his desire to have often BMB's, can't the blood tests indicate whether treatment is needed?He will want one after we get resolution of the AIHA - hopeful here for recovery. Tolerated the Rituxin very well. I asked why not Gazyva, could not get a good answer other than this is what they do at Baptist.

[lankisterguy Volunteer]

Hi Palmetto,

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It sounds like you are doing a good job of asking the right questions, but not getting complete answers. So you may need to be more persistent and specific.

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I am not medically trained, and can only suggest some more questions to ask of your husband's doctor.

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You may want to ask if the BMBs are being used to evaulate your husband's AIHA treatment results separately from the need to treat his CLL. You can also ask if their use of Rituxan is primarily to control his AIHA concurrently with treating his CLL. Do they have any available data on using Gazyva to treat AIHA?

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Then you may want to consider getting a 2nd opinion from a CLL expert doctor

cllsociety.org/toolbox/cll-...

or applying for a free second opinion here:

cllsociety.org/cll-society-...

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Len

[cajunjeff in reply to lankisterguy]

Here is my take on this Len, which is just an educated guess.

For reasons not clear to me, the strategy with AIHA is to get it under control and then treat the Cll that triggers it. The go to treatment for AIHA used to be steroids, but more recently it includes rituximab.

Rituximab is a first generation chimeric cd 20 antibody. Gazyva is a third generation fully humanized cd 20. Gazyva is stronger, in simple terms, because it binds better to cd20.

So why not Gazyva for AIHA? The answer is probably that they have a lot of data rituxumab works, but have never tested Gazyva much with AIHA. My guess is Gazyva would work just as well.

I think the rituxumab given does indirectly treat the Cll. But it’s main purpose in this case is to treat the AIHA. Gazyva and Venetoclax can then be used to treat the Cll where there is more data on Gazyva.

Rituxumab is the safer choice for AIHA because it’s been proven to work. My AIHA was treated with rituxumab, but I never knew why, I was quite frankly too sick to even ask questions and had blind faith in Dr Keating. He switched me to ofatumumab when I had a bad allergic reaction to rituxumab. I think Gazyva would have worked too.

So why the bmb? I have no clue on that. Palmetto, as Len says, you should ask your doctor to fully explain why a bmb is necessary. I can’t think of a reason at this point, but I am not a medical professional.

[Smakwater in reply to cajunjeff]

Wow Jeff,

That is a great speculation!

JM

[AdrianUK in reply to lankisterguy]

I agree with Jeff. Riximab will kill some CLL cells but it has been a bit disappointing when used on its own really, so it is more typically used to treat CLL as part of a combination e.g. FCR or with venetoclax. Two drugs seem to usually be better than one (tho interestingly that may not be the case with ibrutinib and rituximab where the two probably are no better than Ibrutinib alone). As for the bone marrow biopsy definitely ask. It may be "for interest" rather than as a specific reason. The key question to ask is "how would the results of the bone marrow biopsy change your treatment plan?" then your doctor should be able to explain. As always if you would like to get a second opinion it is always a good idea when treatment is looming and if you are in the USA if your insurance will not fund this the CLL society have a free online program which has great reviews.

[Palmetto in reply to AdrianUK]

Thank you for your in depth answers. Since we are back to the same oncologist we have known for 6 years he seems to have changed his thinking about rushing to treat and I am happy about that. He isn't sure now the CLL is active again, but surmises that it is based on count. However, high leukocyte count probably is due to the red blood cells being destroyed hence more white cells than red and he did say this is not clear or relevant at this point. He too agrees that the aim is to get the AIHA under control. I was happy to hear him say this morning that a BMB is NOT necessary to make the determination to treat, which he always insisted on before. He said he would do additional testing to make that decision. He also said today that since Rituxin and steroids also treat the CLL, we may be actually see an improvement in his CLL as well, and he is thinking now about just using the Rituxin with steroids to stabilize the CLL. Although the Venetoclax is the miracle drug now with Gazva, he said it does tear down the counts and my husband is an older CLL patient and he is afraid would be too rough on him. He has always had a very benign course on Gazyva - I guess Rituxin although a step backwards but with the addition of steroids may at least be able to control. We will see how he is at the end of a month. Jeff, in particular, thank you for your excellent advice and for taking the time since you had the AIHA you have lived it and your input is so valuable. I am happy with him buying a year at the time treatment free rather than a rougher treatment with more side effects to try to achieve a more long term remission, in my opinion it is all about quality of life.

[Palmetto in reply to AdrianUK]

Thank you Adrian. Hope you are having a good course, and if I remember you were in the hospital for quite a while last year? Just been hit with a new fear. Results of his free light chains came in and from what I can tell, looks like his findings now point to multiple myeloma. His Kappa's are very elevated while the Lambda is low, ratio 12.47. Waiting to talk to the oncologists but having to do face time husband hears everything. I don't want to upset him. Has anyone here had this with the CLL? Coudl it have been what brought on the hemolysis? All new things. Just when you think you have the CLL battle under a bit of control, the next thing can knock you for a loop.

The only good thing I can see about CLL is other than the treatments is that it is a relatively painless illness, at least for my husband has been. Now this is a possible new disease with even more consequences, and his age would be a huge factor at 80.

[AdrianUK in reply to Palmetto]

Oh my goodness. I do hope that things become clearer in your husbands health situation. I’ve had a few hospitalisations over the years. Last weeks was just two nights fortunately.

[Palmetto in reply to AdrianUK]

Wishing you well! You have been such a valuable contributor here and I have learned so much from everyone but you are always so patient and knowledgeable. Take care.

[wmay13241]

My wife has been in four clinical trials so far - all have required at least one BMB per trial, sometimes more than one.

[Palmetto]

I want to thank everyone here who helped me get through my husband’s hospitalization it turns out that the value I was worried about yesterday was because of the IV I G I was afraid that he developed multiple myeloma along with the CLL but it was a false reading so such a relief and it looks like he will be coming home this afternoon with continued care with Rituxan and any other bloodwork that he might need as an outpatient very happy that this has been the outcome. Thank you everyone for your support and encouragement and valuable information. It really does take a village and we’re all part of the family here.

[Sojomama13 in reply to Palmetto]

Palmetto,

So happy for this outcome. I find this forum incredibly helpful to navigate all the ins and outs of this disease. Wishing you all the best best!

❤️Sandy