CLL - PLL and Ibrutinb

[Roydeane]

My cll was very difficult to diagnose. I had no idea until i got a change in Diagnosis at Columbia. 3 other hospitals got it wrong including sloan. They all said i had DLBCL... and were wrong. I just saw another dr. Dr Byrd in ohio is one of the worlds smartest on CLL and told me my new diagnosis of 17pdelete P53 is not quite right either. My point is get at least 3 solid opinions. Go to the BEST facilities with dedicated teams to CLL and dont just accept the disgnosis. Get more opinions. My main problem is my prolymphocytes are proliferating and i am high risk. I start ibrutinib in a couple weeks but if side effects are no good then there is Acalabrutinib and also Venetoclax. Lots is in the clinical pipeline so i have been told and access to these are through the best facilities. I will try to keep you updated. Take care everyone.

[newyork8]

Thanks for the advice! Did you find the bedside manner of these docs varied or were some more consultative with you?

[Roydeane in reply to newyork8]

All docs vary extremely. Even within the same facility. Just do your research.

[lexie]

Glad that you found your way to Dr. Byrd at OSU.I see him as well. Dr. Byrd, his team, his research, and the facilities are outstanding! How long had you been chasing down a diagnosis before you saw Dr. Byrd? Looking forward to your updates.

[Roydeane in reply to lexie]

Dr Byrd was my last. Now I am having HIS diagnosis confirmed by my other doctors. Dr Byrds Cytogenetics report produced different results that what I had at Sloan. To everyone's credit though, my case has had biomarkers and other info that added to the complexity of my diagnosis. I could have really and accidentally been treated with R-CHOP and not needed it. SECOND AND THIRD OPNIONS ALWAYS ALWAYS ALWAYS.

[Cllcanada Top Poster CURE Hero]

Just to clarify...you had a diagnosis of CLL and transformed to PLL, or you never had CLL at all and were misdiagnosed?

You are fortunate you were in the U.S. , many of us in other countries don't have access to multiple specialist... ☹️

Hope the Imbruvica (ibrutinib) treatment is successful.

~chris

[Roydeane in reply to Cllcanada]

I have CLL which has the markers that could transform to PLL. It is my prolymphocytes like in PLL that is my primary problem.

I also have a mutation on 14 along with and 17p delete in the node removed from my neck in Aug of 2016 but again, this is all still confusing but the treatment, in any case, is the same... recommended by all three of my doctors at Sloan, Columbia and Ohio.

Thanks for the good wishes that this works.

[roszika]

I live in Australia but have a friend also with CLL who attends Columbus in Ohio- sounds like you are in the best place. In Australia we have good specialists but I am beginning to think the Columbus Uni Ohio has the best people to handle our condition

[Roydeane in reply to roszika]

Cornel Weill, Columbia Presbyterian, Sloan Kettering, Ohio State Wexver Medical... there are many good ones with dedicated CLL teams. And in Ohio it is Dr Byrd you want and at Columbia it is Dr Owen Occoner... he is amazing.

[Cllcanada Top Poster CURE Hero in reply to roszika]

Certainly OSU James is a leading CLL research institution, but there is not one better place than another. There is a huge amount of data sharing that takes place in CLL, and Dr. Byrd and his research lab are in constant contact with other doctors through the CLL Research Consortium, internationally... including Peter Mac in Melbourne.

There are massive research and clinical trial programs in Germany, Italy and Spain, England, the Scandinavian countries etc. all sharing knowledge.

CLL Research Consortium

cll.ucsd.edu

[bbreeland]

How are you doing now Roydeane? Do you still have prolymphocytes on your lab work? I just got a disconcerning CBC with less than 5% prolymphocytes listed and I wondered how high yours got and how you are doing. Thanks so much.

[paula_dae]

Hi Roydeane,

You never sent an update. How are you doing? Is the treatment effective so far?

Regards.