So the final moment came...we need treatment

[paula_dae]

AS long as we postponed it, the time had come so quickly. My mom WBC at 190 and hemoglobin below 10.

The doctor said its our choice whether Rituximab + some additions, or Ibrutinib. I was thinking Ibrutinib is safe until the latest trial in BG, where 8 out of 10 people dies mainly from cardiovascular issues and the doctor observed himself.

The decision is mine and I am more than scared I will do the wrong choice and never forgive myself if it goes wrong.

Please, share opinions, experience and anything that could help. I am so desperate and just trying to get enough information to make the most education decision.

I need your help.

Love and health to everyone.

[GMa27]

What are her markers and age?

[paula_dae in reply to GMa27]

WBC 190, Hemoglobin 9.8, lymphucytes 66. Her age is 69

[paula_dae in reply to paula_dae]

Non 17p deletion.

[Ayush_IND]

Hi Paula ,

I am based out of india and my father is currently undergoing treatment of CLL. Few months back I was in same confusion , our doctor recommend us for FCR or ibrutnib . levels before the treatment was HB: 7.8, wbc : 90k , LYM: 55k .

We decided to go with FCR considering the side effects of ibrutnib .

Week before we have completed 4 cycles of FCR and we are in remission and all reports are clean . It was a smooth journey with minimal side effects .

I recommend you to go with FCR .

[paula_dae in reply to Ayush_IND]

how old is he?

[Ayush_IND in reply to paula_dae]

Age: 66

[Canuck901 in reply to Ayush_IND]

Mutated or unmutated?

[Ayush_IND in reply to Canuck901]

Unmutated

[Canuck901]

If fit and healthy and mutated FCR would be the better choice remission will last long , if you’re unmutated FCR won’t work for long and Ibruntnib or I and V combo or acalabrutnib would be better or a good trial

[paula_dae in reply to Canuck901]

But she already has high cholesterol, blocked arteries and fragile tissues, I read Ibrutinib increases the chances of cardiovascular issues. I used to think it is the best solution, but risks are too high

[Canuck901 in reply to paula_dae]

Yeah that’s a concern if she has cardio issues even FCR would be hard

On a cardio issue

Is acalabrutnib available ? Lower dose Ibruntnib might be ok.

Dr would have to do cardio tests

EKG and muggle heart scan

[sllincolorado in reply to paula_dae]

Unmutated is the trump card per my doc. Therefore ibrutininib or acalabrutinib.

[cllady01 Former Volunteer]

Paula, I'd ask the Dr. "What if it were your mother, which would you choose?"

and "Why?"

My musings on your question:

The Dr. can't know everything, but should be able to make a good, reasoned, assumption of how your mother will do on either treatment.

Does your mother not want to weigh in as to her preference? It isn't an easy choice for anyone to make, so, please try to get some help in weighing the obvious differences.

If you have already had that discussion and the Dr. has given you his/her view of the options, what does your mother say her preference is when you present the possibilities?

One factor is the length of treatment---FCR is limited time and has been seen to have a long remission time; Ibrutinib is taken until it stops working for her, or adverse events become too much for her system.

Both treatments need careful avoidance of and immediate tending to infections and seen by DR. Having a thermometer at home to check temperature is important. Fevers and chills need quick action.

Hopefully she is immunized for pneumonia and flu. Also, if you have Shringx available for her to have the two shots, (weeks apart) for some protection against Shingles.

If she has any signs of Herpes Simplex, it would be wise to ask about a prophylactic to keep those fever blisters at bay.

If she has had a cardio workup showing her heart is healthy, the heart adverse event may be less likely in regard to Ibrutinib. If she has arthritis, it is likely she will have pain in her joints and muscles for longer than those without arthritis have it, on Ibrutinib.

As you know, this is not an easy decision and the best you can do is the best you can do in discerning, along with the Dr. and your mother, and try to work to have her at her best for the treatment.

Please keep us updated. We are here and have you and your mother in our thoughts.

[paula_dae in reply to cllady01]

Yes she also has arthritis

[Canuck901 in reply to paula_dae]

Ask dr what he would do also get 2nd opinion and did you voice your concerns to the DR?

[Canuck901 in reply to paula_dae]

Also do you have options of Acalabrutnib and Venetoclax?

[GMa27]

I had 3 cycles of FCR. Didn't want Ibrutinib due to side effects and possible AFib risk. But FCR is not usually recommended over 65. There may be other options. Ask about Gazvya, Acalabrutinib ( less side effects than Ibrutinib), Venetoclax or Rituxin infusions. 💕

[paula_dae in reply to GMa27]

The Dr. mentioned Acalabrutinib, but reading the comments here I’m not convinced how less risky it is for the cardiovascular system.

[BeckyLUSA]

Usually, we are watched carefully when we start new drugs. Personally, I would go with the Acalabrutinib. It has less side effects than the Ibrutinib. At the first sign of any Afib like reactions you could see the doctor and stop the drug. But there is a chance the drug will not cause any cardiovascular issues at all.

Also, the 69% figure you mentioned sounds awfully high to me. I would not lend a lot of credence to that study unless I saw all of the background info on it. Hate to bring it up again, but Neil’s article on Causation and Correlation has me skeptical about a lot of things we read.

Wishing good things for you and your Mom!

BeckyL USA