Myloproliferative disorder - and CLL

[Marmarnix]

CLL has not been active for many years, and this week, at my six month check-in, my oncologist suggested she wanted to test for myloproliferative disorder. Does anyone have any experience with this possibility. Just turned eighty, and feeling a little nervous and wanting more information. Of course, I have to wait for test results. Thanks for the great information I find every day on this wonderful site.

[SofiaDeo]

It's not a single "myeloproliferative disorder" but a group of them. And I am wondering, if you didn't have a FISH 10 years ago, if your doc is concerned about the possibility of CML versus CLL. Or if you perhaps have a different blood disorder, depending on any signs and symptoms you have had this past decade. It doesn't hurt to verify you have a somewhat stable CLL and not some other type of blood disorder.

webmd.com/cancer/chronic-my...

Please note you left your post unlocked, it's not private, it's open to the entire Internet.

[Marmarnix in reply to SofiaDeo]

Thanks so much for replying, Sofia. Yes, I do understand that there are many categories involved here. I did have a FISH report in 2013 - low level of 11q. No evidence of deletion 17p and trisomy 12.So I have not overly worried about that. The message from my oncologist said about the blood results 'it looks like a myloproliferative disorder" and we would talk when the results are available. So i am jumping ahead, likely, but wondered if others have moved from a CLL largely found in bone marrow and blood to any other kind of blood problem.

[SofiaDeo in reply to Marmarnix]

You don't state how you got diagnosed with CLL, or what bloodwork trends show, so all this is guessing in my part. There must be something in your tests that the doc wants to verify/follow up on. Early FISH tests for CLL didn't always check for t(11;14), which would point towards CML, a myeloproliferative disorder. Some people have mixed markers indicatove of CLL but possibly other dysfunction.

[Marmarnix in reply to SofiaDeo]

Again, many thanks. Confess that I have not used this site to write often, so not sure how to make it more private.

CLL was diagnosed back in 2008 following bouts of pneumonia and very low white blood cell counts ( live in Canada). Bone marrow biopsy confirmed diagnosis. Since then it's been pretty inactive. Blood numbers now indicate elevated platelets, somewhat elevated white blood cells (compared to my usual) and elevated lactate dehydrogenase. Yes, I could not see on the FISH results anything to t(11:14).

I guess I need to be patient and come back when I have results.

I am changing my Health Unlocked moniker to ArtHeart, once I read the privacy statements. Thanks.

[SofiaDeo in reply to Marmarnix]

With no apparent reason for elevated platelets, it seems reasonable to check that out.

[Marmarnix in reply to SofiaDeo]

Good morning Sofia. Results back and it seems I am negative for BCR-ABL but do have the mutation JAK2 V617F. I will see my oncologist next week to figure out what it all means and what is next. So appreciated having replies from you and Lambo1.

[Lambo1]

Greetings. I was diagnosed with CLL six years ago and within the same three months I was also diagnosed with essential thrombothycemia (an MPN) as well as breast cancer. Needless to say, it was an overwhelming time. My breast cancer was dealt with successfully, I am still in W&W with my CLL, and I have been and will remain on hydroxyurea for the ET. I have had zero side effects from the medication other than my hair getting curlier. I hope your journey goes as smoothly as mine. Breath deep!

[Marmarnix in reply to Lambo1]

Thanks for this reply... very encouraging...what a triple whammy. Must have been quite a time. But I like where you are now. Appreciate your writing to me.

[Marmarnix in reply to Lambo1]

Coming back to update... so interesting to have had your experience. Diagnosis was changed to Polycythemia Vera after another blood test revealed low level of erythropoietin . I started on low dose hydroxyurea this week, and due for a phlebotomy tomorrow. Feeling okay, a little tired. Also being treated for peripheral artery disease, so xarelto and baby aspirin. Hope my hair gets curly,lol.