CLL ALL CML AML

[tedrog]

Hi,

How often and where can I find info on CLL becoming ALL; or CML becoming AML?

Are ALL and AML different diseases or are they the same thing just at a later ("Acute") stage/progression?

[Cllcanada Top Poster CURE Hero]

CLL can transform to a number for aggressive lymphomas, diffuse large B cell, DLBCL, Hodgkin's lymphoma and PLL. these are known as Richter's transformations...

Also it can become MDS/AML., myelodysplastic syndrome/acute myeloid leukaemia. This is extremely rare now, and was more common in the days of chemotherapy like FC.

That's about the extent of it, there are cases of one patient having two lymphomas running in parallel, but again...very rare. I have a friend with CLL and CMML and a few have CLL and Waldenstrom Macroglobulinemia, WM

~chris

[tedrog in reply to Cllcanada]

because I was dx CLL in late 2014. no outward symptoms... good platelets, etc.

anyway we wrnt Moffit with all our CLL questions last Monday -- rbecause local hema wanted to start Ibrutinib. when we got to specialist, he said forget that, you got CML, too. (Philadelphia chromosome?)... so we were kinda blindsided. Now this dr wants bmb and then treatment.

I'm thinking that good question is:

how likely is it my CML (or CLL) becomes Acute?

it occurs to me only the Acute can kill you?

--idk if this helps, but my context is: LEFT UNTREATED, without the well known (drenching night sweats x 6 weeks; 6 months wbc doubling, loss or gain >10% bodyweight x 6 months, severe fatigue)

symptoms coming....

[Cllcanada Top Poster CURE Hero in reply to tedrog]

I know very little about CML, I know some acute lymphomas can be cured, as was my diffuse large B cell.. but the CLL still remains...

[tedrog in reply to Cllcanada]

would you advise to let them do a bmb? i haven't so far.

i'm thinking about letting them do one, anyway, maybe only one.

having ONE (1) will tell us way more than we know now, like, will it tell us if anything is close to being Acute?

you see, i'm reluctant/uncomfortable/religious reasons in taking any treatment without a "more likely than not" death scenario. based on more than anecdote, but backed by indicators and statistics.

is there a CML group here?

[sandybeaches in reply to tedrog]

In my opinion, having a bone marrow biopsy is a good thing as it will give the specialist more information. In my reading about CML, as a friend has it, it must be treated more aggressively than CLL.

I highly recommend that you read the literature put out by the USA lymphoma / leukemia society. You could probably obtain this through the specialists clinic or online.

I wish you the best,

Sandy Beaches

[thompsonellen in reply to tedrog]

I've had 3 BMBs and they weren't that bad. My CLL never progressed to anything else, but still required treatment very quickly. I am very sure if I hadn't had treatment, I would be dead, and I'm not quite 50 and I have an 18 year old son, and so that wasn't an option. I value the freedom of choice but for me, I felt like God had more left for me to do, and thankfully I feel fine now.

[Jm954 Administrator]

Concomitant CLL and CML are not unheard of but are completely unrelated chronic leukaemias.

The Philadelphia chromosome (t(9;22)(q34;q11)) is diagnostic of CML. Coincidentally, treatment of CML is also with a kinase targeted therapy but one known as a Tyrosine Kinase Inhibitor or TKI which targets the Bcr-Abl gene which is produced as a result of the chromosome abnormality. There are several available with various safety profiles but most people are started on Imatinib and get an excellent response.

Because of the presence of the specific Bcr-Abl gene, CML disease status can be monitored testing for levels of BCR-ABL mRNA in the peripheral blood which gives an accurate assessment of disease status.

There is a phase of CML called accelerated phase in which there are more than usual blast cells present. These are the most primitive cells. This phase is part of the natural pattern of untreated CML and represents a more aggressive form of the disease. To check for this will probably be the reason your Dr wants to to a bone marrow.

The good news is that CML has gone from a uniformly fatal condition in the past to a chronic, manageable one and you should do very well.

Here are a few references for you about CML, treatment and monitoring.

cancerresearchuk.org/about-...

ncbi.nlm.nih.gov/pmc/articl...

I wish you all the very best.

[tedrog in reply to Jm954]

Thank you, Jm954. yes, there's also this, from 2010:

mobile.nytimes.com/2010/01/...

[Jm954 Administrator in reply to tedrog]

Good article. Good luck!