Clinical trial for waldenstrom

[waer88]

I started a clinical trial of two oral meds this week: ibrutinib and venetoclax. Dana farber is running the 50 person trial. They’re powerful, targeted meds to knock down the cancer.

I was diagnosed last feb as I turned 70 and moved quickly from watch and wait to treatment based on blood tests not symptoms.

The potential side effects of the 2 drugs are sobering. I want to try this and if I need to change treatment I can go to chemo, which I want to avoid but understand it’s most proven for waldenstrom.

My journey begins...

[Ghounds]

Good luck! Let us know how you get on.

[Stuff427]

I have been to DF and found it to be a fine institution, especially for WM. My question has to do with the determining factor that started you on treatment. From what you are saying It is my understanding that this will be your initial,first treatment correct?

[waer88 in reply to Stuff427]

It is a first treatment and my blood values led to the decision to begin treatment five months after I was diagnosed. I've had some fatigue and neuropathy but no life altering symptoms. I also have the CXCR mutation that I'm told leads to early treatment.

[Stuff427]

Well you are in a great place for your care. I hope all goes well for you.

[waer88]

Thanks. I have a friend who had cll 15 years ago and with various treatments he’s off treatment. He’s been great advisor to me

[Stuff427 in reply to waer88]

I know someone who took the regimen you are taking, it went well for them actually reached MRD status. Not sure about the mutations. I ended up with both WM and CLL but am doing very well on Acalabrutinub. My blood work is almost normal.

[Smakwater]

wear88,

Just wondering what you mean by chemo "is most proven"?

Ibrutinib and Venetoclax are in the beginning stages of treatment observation for Waldenstrom's while some of the chemo therapies have been in use much longer. The time frame for approved observation does not necessarily qualify the terminology "proven" if perceived to mean "better overall".

In addition, there are measures of efficacy in addition to tolerability.

I hope you overcome the adverse conditions and benefit quality of life with durability.

JM

[Lu05]

Hi there waer88 I am a 45 ye old female I have been on W&W since last feb even though I believe I had SLL/CLL for a few years before.

I began clinical trial CLL17 Wednesday 7th July as my dr felt it was time due to changes in my bloods and lymphdenapathy.

There were 3 arms of treatment and the one I got was Ibrutinib & Venetoclax it was randomized by comp x so 2 days in I feel like I’ve been drove over by a bicycle. Slightly fluey and sore in my chest. I’ll be monitored constant and need to report and side effects that I notice. The trial arm is 15 months long so hoping and praying for total remission. Stay in touch and best of luck with it LU05🙏🏻