continuing the journey

[FiArt12X]

I just had my 3rd round of Chemotherapy ( O CHOP). Doing pretty well, will see 2nd week is usually the hardest. My oncologist was very pleased with how I have responded (ei. Platelets 357 from 1st chemo 10).I also had a port put in my chest last week for easier access for infusion iOS and blood work. It is. Necessary for the future Bone Marrow Transplant (BMT).

I will from time to time bring up my earlier journey because of everyone’s different situations looking for information.

My initial treatment was a clinical study. It involved Ibrutinib and Venetoclax. Venetoclax had not been approved in the USA as yet. It was a fixed duration study (15 months) to see if they could obtain remission results with the combinations and be able to stop the oral medications. There were 289 patients nationwide. Of these results were very good 98%. My situation as stated before was 2-1/2 years. My understanding is after 5 years of monitoring results there was 90-95% still in remission. I do know they are now trying Alcalabrutinib & Venetoclax. My warning to people trying these combined medications is how the did wipe me out in the middle of the day with feeling nausea and fatigue. After a time and discussion with another patient (and medical ok) we separated taking each med at different times of day and that eased at in many cases resolved the side effects. Plus I found that plain Greek yogurt 1/2 w it’s breakfast helped my digestive and bowel function.

Hope this helps

[Big_Dee]

Hello FiArt12X

Great update. Blessings going forward.

[FiArt12X in reply to Big_Dee]

Thank you

[skipro]

Hi

I am very interested in your story.

I’ve had extreme fatigue and nausea every day since starting V + O and it sounds like you had the same with your initial V plus I

how long were you in remission after V + I?

what led you to the OCHOP decision?

you mentioned mutated. which marker was mutated?

Thank you

Skipro

[SeymourB]

FiArt12X -

You've had such a journey!

I'm curious to know your original FiSH and IGHV mutation status.

Did you get a Richter's diagnosis that led to the OCHOP?

=seymour=

[FiArt12X in reply to SeymourB]

SeymoreB,

My original IGHV in 2016 was Unmutated

Fish was: abnormal with copy # loss of IgH(14q32)

“ “. “. “. “. D1223

Last Bone marrow draw prior treatment before Richters Transformation confirmed Dec.28, 2023

Mutations Two: 1)uncertain significance (BCOR c. 1705 delt, p.Ser569Profs Ter20 VAF: 88% Tier 1

[FiArt12X in reply to FiArt12X]

Sorry hit send before finishing

2)(PLCG2) suggests resistance to BTK inhibitors

The RT did lead to the O CHOP plus Neulasta but only to suppress the CLL. We had started Pirtobrutinib 1/24 intended to get me to the Bone Marrow Transplant hopefully late April early May. Pirto worked fabulously through to April 2 but the disease showed signs it was coming back. A week later it was roaring back. Started O Chop 4/16/24… unfortunately it was only the CHO the P (Prednisone) had to be given earlier to pick up my numbers. It did work great. Without it in the first Cycle I think it influence my acquisition of infection (pretty bad). I was hospitalized 7 days lots of antibiotics, platelets, and blood transfusions. Bounced back great. 2nd cycle great no problems. Just started 3rd going well. BMT all set for mid/end of June.

Hope that answers things

[SeymourB in reply to FiArt12X]

FiArt12X -

I'm sure this additional info will be happily received by others in similar situations. Some of it could be put into your profile, if you have the time and energy.

Best of luck to you as you face the future!

=seymour=