My Oncologist keeps telling me about this very rare combo of my blood cancers I have! I not only have CLL but also MDS/MPN. The article of my rare blood cancers will be in the
AJOM in June or July; I should receive an abstract on this in June. It has something to do with my mutated gene “beta” so very confusing. Anyone with any knowledge??
Mimi in GA
Mimi, I just want to say it is good to hear from you. I hope the treatment your started about 2 months ago is going well. I have read about MPN/MDS and the details added to CLL intricacies is mind boggling.
From the fact that your case will be in the annals of AJOM for its rarity, I guess I am not alone in my state of boggled mind.
Hope all is going well!
Mimi, There are several papers in the literature about the rare condition of having both a myeloproliferative (MDS) and lymphoproliferative (CLL) diagnosis, but none that I know of have shown a link. Take a look at the quotes from the Molecular and Clinical Oncology paper below.
Concomitant myeloproliferative and lymphoproliferative neoplasms, distinct progenitors: A case report and review of the literature
In Molecular and Clinical Oncology
July, 2018
spandidos-publications.com/...
“In-depth knowledge of the origin and nature of the concomitance of these two events is currently lacking. To date, there is no evidence supporting the presence of a common and unique stem cell capable of giving rise to both leukemic and myeloid clones.”
“In conclusion, it would be interesting to compare genetic biomarkers of the two diseases in both identified clones, in order to report whether they share any common pathways. More studies are required to evaluate the genomic link between these two diseases and to elucidate whether their concomitance is coincidental, or if there is an association between these two entities.”
Interestingly, my sister has a CD19/CD5 clone that at this point is considered to be Monoclonal B lymphocytosis (MBL), and at the same time has a borderline diagnosis of Myelodysplastic Syndrome (MDS).
I’ll be interesting to read the paper based on your diagnoses. Sounds like you will be famous if your team has found a connection between the lymphoid and myeloid clones!
gardening girl in Tennessee
It is so very rare he tells me. I too had MBL before the CLL. It has been a very challenging last 12 months; 7 blood transfusions, two staff infections, 1 case of cellulitis, developed A-Fib, blood clots up and down both arms! Months to get my hemoglobin up to 8, chest pains, no appetite, weight loss, hospitalizations, fainting spells, etc......Then went on 60 mg of prednisone Christmas Eve., and weened off my end of Feb., NOW I AM FAT AND SASSY and can’t seen to lose the weight!!🤪🤪🤪🤪🤪🤪. Always something, I am so thankful I just feel better!
Mimi in GA
You have been through so much, Mimi. I'm glad you are feeling better!
Good find, with the conclusion in line with the standard haematopoiesis diagram, showing the separate myeloid and lymphoid stem cell lines.
en.m.wikipedia.org/wiki/Hae...
It's also why treatments that work on cancers in one stem cell line are unlikely to work in the other - different cellular pathways are involved.
Neil
and so it goes...
I too have CLL and MDS. Now I know why it was so hard to find information on the combination-the rarity. My oncologist doesn't say much about the MDS, but is watching for any blood changes. I am being treated with Ibrutinib for CLL and am in remission. I just try to enjoy my life and wish for the best and not worry.
Good attitude! I am being treated for the MDS w/ Imatinib. My CLL is behaving so far🙃. Stay positive and keep moving forward.
Mimi
Hello Mimi. I have been a member and frequent visitor here since 2012, but this is the first time I have posted. I want to now as I, too, have both CLL and MDS (RS-MLD) and it seems we are part of a very small group. I am also a member of an MDS support group but until reading your post, I had not come across anyone else with both conditions.
In my own case, I was in complete remission of CLL following FCR x 6 in 2012 but have been pancytopenic ever since. In 2014 I was diagnosed (self) with secondary MDS, confirmed in February 2015, probably related to the Fludaribine element of the chemotherapy. By July last year the indications were, following the persistent cytopenias and falling haemoglobin and neutrophil counts, that a stem cell transplant was necessary. However, in September, the results of a bone marrow biopsy revealed significant bone marrow infiltration of CLL and trilineage haematopoiesis with features consistent with MDS. So, at this time, it is thought that the CLL is the primary concern and should be treated and the stem cell transplant put on hold. Since January I have been taking Ibrutinib without any major side effects. As I am mostly asymptomatic, apart from the cytopenias, it will require further bone marrow biopsies to determine how effective it is. What happens next regarding the MDS, assuming/hoping the Ibrutinib does block the CLL, is unknown.We are sailing in uncharted waters, but we are still sailing!
I'm not sure if any of this is relevant to you, Mimi and Ifm73, but hope it helps in some way.
Hello!
Yes a very rare thing to have! I have never been treated for my CLL (still under Watch and Wait) for that. I was told you can get MDS due to cancer treatments ( never been treated). I have CLL & MDS/MPN. Very rare overlap with two, MDS/MPN. Mine involves gene mutation which in turn makes me stay on Chemo the rest of my life! Oral tab. My Oncologist and the pathologist have written an article on me in the AJOM for June this year. The MDS/MPN is the precursor for CML. So here I am trying to enjoy everyday I have. I hope you are doing well and will continue to do so.
Mimi in GA
Does anyone know of a cll specialist in London?
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