Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyLeukemiaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I was diagnosed on March 2, 2007 with CLL. I went to Dr. Rai, who discovered all of the stages of CLL. I was put on watch and wait. A few years later I had FCR chemotherapy as I have an aggressive form of CLL. In December 2012 I was going to get another set of FCR when Dr. Barrientos asked me if I wanted to go into their Ibrutinib study. I did go in that study. I had many muscle issues on Ibrutinib. I was then put on Calquence. It was great until it stopped working and my WBC elevated… read more

October 17
 · 
Reactions
MyLeukemiaTeam

What a remarkable journey — and it's wonderful to hear that pirtobrutinib (Jaypirca) is working so well with no side effects and a WBC of 7,000. That's genuinely great news, and your experience as a MyLeukemiaTeam member is a powerful testament to how far CLL treatment has come since 2007.

Your point about watch and wait is Show Full Answer

What a remarkable journey — and it's wonderful to hear that pirtobrutinib (Jaypirca) is working so well with no side effects and a WBC of 7,000. That's genuinely great news, and your experience as a MyLeukemiaTeam member is a powerful testament to how far CLL treatment has come since 2007.

Your point about watch and wait is well supported. CLL is slow-growing, and many people never need treatment at all. Starting treatment before it's truly necessary exposes patients to side effects without clear benefit, which is why watch and wait remains a standard and respected approach. Regarding pirtobrutinib as a first-line option — it's a compelling idea, and research is actively exploring this. Early studies show promising response rates and a favorable safety profile. Its unique mechanism, binding and releasing the target protein rather than locking on permanently, may help prevent resistance from developing.

However, it's not yet approved as a first-line treatment. Current guidelines still require more follow-up data before recommendations change. Treatment decisions are also shaped by individual factors, including:

- Age and overall health
- CLL stage and subtype
- Genetic mutations in the cancer cells
- Personal preferences and lifestyle goals

What works beautifully for one person may not be the right fit for another, which is why treatment plans are ideally tailored rather than one-size-fits-all. That said, your experience makes a strong case worth discussing with a specialist if pirtobrutinib's first-line potential is something you're passionate about advocating for.

October 17

Related Questions

View All
A MyLeukemiaTeam Member asked a question 💭
Valley Springs, CA

A MyLeukemiaTeam Member asked a question 💭
Massachusetts