High everyone I was diagnosed with CML 12mths ago since then my blood reading have increased. My specialist has just scared the shit out of me suggesting I have a Tissue sample taken and we try and find a Bone Marrow donar. Has everyone experienced this prognosis?
I am told I should get a second opinion.
Errrr yeah. What medication are you currently on. What’s your last PCR and have you had another FISH test and or mutation testing. If you’re on imatinib or gleevec you’ll be switched to another TKI if resistance has become apparent but that would only be if you have x3 upticks or a significant uptick on your PCR.
I hope this is a false positive
Alex
Gee Alex you are right into it. This is early days for me at the moment, I am on no medication at this stage, frankly the Specialist has not even mentioned about any medication. After reading some of the comments I will be on to it. There are obviously a lot of questions I will be asking as in FISH test, I have no idea what that is. The same with all of your comments referring to TKI, x3 upticks etc.
It is amazing his comments when I was diagnosed was "in time may be in the 5yrs time may be 10 or 15yrs time may be longer we will have to treat me with a Bone Marrow transplant, Blood Transfusions and Chemo" to my latest appointment, my 3rd by the way to " I think we will have a Tissue Test to find a Bone Marrow donor as we will need one in the future. Not sure just how serious it is at the moment or whether he is building a foundation for further treatment but it did throw me. He was talking about doing this while I am fit and can handle the treatment.
It appears to have gone from a nonchalant to urgent. I will be in touch but I reckon I will get a second opinion regarding treatment.
What do you mean by tissue sample? A bone marrow biopsy?
Can you share PCR results, what drugs you are on and any other blood test results?
David.
Hi David I will find out more obviously. I am a fairly laid back person but now all of a sudden there appears to be more urgency and I need to become more involved with the process rather than let nature and the specialist take their course.
I will get hold of my PCR results and I will be happy to share them. No drugs at this stage have been prescribed, I presume tissue sample is a bone marrow biopsy again I will find out.
I am in Australia our terminologies may differ.
I’m really confused now ... you were diagnosed 12 months ago, but have not have had any medication? One of two things have happened ... either you have the worst doctor in the world, or are you sure you have CML? Is it perhaps CLL? CLL often has a “watch and wait” period that CML doesn’t.
CML is Chronic Myeloid Leukaemia. CLL is Chronic Lymphocytic Leukaemia. Similar names, different diseases.
The reason I ask is that with CML there is zero reason to hold off giving the medication right away. None at all.
David.
Definitely CML according to the Specialist. After talking with you guys I will seek a second opinion.
Howdy Picks,
Welcome to CML Support! The only reason I can think of why you may not have started a TKI is if you have atypical CML. If you've been diagnosed with Ph+ Chronic myelocytic (myeloid, myelogenous, or granulocytic) leukemia then I'm pretty sure you should be undergoing treatment, as it is a fatal disease if not properly managed.
You could get some good advice from Dr. Hughes if you can get in touch with him. I don't know if he works clinically with CML patients. Here's a short profile:
Professor Timothy Hughes is the Precision Medicine Theme Leader at SAHMRI and Consultant Haematologist in the Division of Haematology at SA Pathology. He is also the Cancer Council Chair in Cancer Research, Chair of the International Chronic Myeloid Leukemia Foundation (iCMLf) and Fellow of the Australian Academy of Health and Medical Sciences (AAHMS).
Professor Hughes is an international expert in the biology and treatment of leukaemia. He led the establishment of the molecular response criteria that are used world-wide to measure response in chronic myeloid leukaemia (CML) and has led many of the key Global and National trials. His group has successfully developed predictive bioassays and molecular targets that influence the way CML patients are managed world-wide. He has published over 250 papers that have been cited over 40,000 times.
In October 2017 Professor Hughes was awarded the GSK Award for Research Excellence 2017 for pioneering the use of tyrosine kinase inhibitors (TKIs).
Good luck!
My wife just informed me that I have CMML not CML. CMML stands for Chronic myelomonocytic leukemia. I'm not sure if there is a difference between the two. This type of leukemia I have is rare and the only way to get rid of it according to my specialist is by a bone marrow transplant. Sorry if I've confused everyone. :o
There is definitely a difference, and the treatment for each disease is not the same. The "watch and wait" approach is a totally valid one for CMML, so your doctor has not done anything unusual.
However, CMML is not really something any of here will know anything about in much detail. The best thing I could suggest would be to look at a couple of Facebook groups for CMML - there doesn't seem to be a good web forum like this one for CMML.
https://www.facebook.com/groups/338335146505498/
David.
