Myelodydisplasia (?)Leukaemia

[Veebeegeebee]

So can someone tell me if this is what CLL can turn into? and how much worse than CLL is it?

Many thanks, Veronica

[Veebeegeebee]

I should add, George my husband, had nearly 4 years on Ibrutinib, then when it failed was able to start and complete the two years on Venetoclax. Having finished that course has now had tests & bone marrow test only to be told today the CLL could be changing into Myleosplastic (?) Leukaemia. More tests following and waiting on the gene pool(?) test to come in too.

[AussieNeil Administrator]

There is a risk of developing Myelodysplastic Syndrome (MDS) or Acute Myeloid Leukemia (to which MDS can also progress) from older chemotherapy treatments (such as FCR or BR).

However, you are probably thinking of Richter's Syndrome/Transformation, when CLL turns into a aggressive B cell lymphoma, typically Diffuse Large B-Cell Lymphoma (DLBCL) or Hodgkin's Lymphoma. The risk varies with prognostic markers, with a higher risk with 11q del and NOTCH-1. Unfortunately those prognostic markers typically aren't done at diagnosis in Australia.

Neil

[Veebeegeebee in reply to AussieNeil]

George has had FCR in 2011, 2015? and another year 2017? as well just before Ibrutinib was approved by the government. Then had he Ibrutinib for 4 years & that started failing so has had Venetoclax for 2 yrs. He has just finished this in February this year and had a bone marrow biopsy & blood tests in March and had results today. Still waiting on 'gene pool' results today although Dr tried to contact Lab about results while there but to no gain. Doctor (Haematologist/Oncologist) said likely turning to Mylodysplastic (?) Syndrome or something to that effect. I wasn't there. More bloods to be done now. Just wondering what he's in for if this is happening?

[cajunjeff in reply to Veebeegeebee]

Hello Veronica, I am no expert, but there could be some semantics at play with your understanding of the doctor saying his cll is likely “turning into” myelodysplastic syndrome (MDS) , if it is MDS.

Further along the lines of what Neil was writing, some of us with cll may have our cll “transform” into DLBCL through a process called Richters transformation.

We also carry an enhanced risk of secondary cancers, notably some skin cancers. And those of us who have had FCR are at an enhanced risk of MDS.

This is where the semantics comes in. With a cancer like DLBCL, our cll can “”transform” (change) into a more dangerous blood cancer. The causes of MDS, however, are largely unknown, but one risk factor for MDS is previous chemotherapy. Thus our cll doesnt technically “transform” into MDS, but rather a treatment for cll (chemo) may have enhanced the risk for MDS.

You have have misheard the doctor saying it “turned into”. Or your doctor may have thought this a distinction without a difference, that is, it doesnt matter much to him whether Cll caused his MDS or cll treatment caused his MDS. Or its also quite possible that my understanding of how MDS relates to cll is off the mark.

The reason I chimed in after Neils response to you is to help clarify why Neil thought of Richters. It’s probably because the words “turned into” describe a true transformation, while MDS is more of a secondary risk associated with chemo.

Hopefully some of the responses here will help you ask the doctor the right questions so you can know exactly what cancer it might be. The treatments and prognosis varies among these cancers. Good luck, it sounds as if his medical team is on top of things.

[studebaker in reply to AussieNeil]

Neil is Chlorambucil treatment also represent the risk of development of MDS or AML Thanks

Dana

[AussieNeil Administrator in reply to studebaker]

Dana, while there is a risk of developing MDS or AML after treatment of CLL with chlorambucil, it's very rare.

[studebaker in reply to AussieNeil]

Thanks Neil👋🏻

[Veebeegeebee]

I used to accompany George to his appointments but he goes alone now. First diagnosed in 2007, but we know he had lymph nodes for years in his neck and armpits for years before diagnosed, but never actually 'saw' them until a CT was done on his neck for another totally different reason and the report said "please note enlarged lymph nodes which should be investigated!"

[Veebeegeebee]

BMB: 8% lymph’s & 8% Ring Sideroblasts 4% mono? B Cell 10%. aggregate of ?spindle? Lymphocytes Dr’s handwriting hard to read

[DriedSeaweed in reply to Veebeegeebee]

Could you get a typed progress note from the doctor for the visit? Since most medical records are digitized now it seems likely he would need to type up a summary of the visit into their database.

Sorry I can’t help interpreting the BMB. But if you can ask for the pathology report you can see what the pathologist thinks.

If the two ideas above seem like they would confuse you more can you ask for a quick follow up phone call since there is confusion?

If MDS it is a type of bone marrow failure where he is having trouble producing certain blood cells and it is not necessarily and urgent issue. But, probably close monitoring.

If the CLL “transformed” I suspect you would have a bunch of appointments lined up and your phone would be ringing off the hook since it is urgent. So, it is probably not this.

[Jm954 Administrator in reply to Veebeegeebee]

Hi,

I'm sorry to hear of your husband's probable MDS. Ring sideroblasts are a common finding in MDS associated with refractory anaemia, along with other characteristics, depending on the cell line. The severity of the dysplasia and the genetics are important to determine the severity. I'm afraid that some severe cases of MDS can transform into acute myeloid leukaemia with time. Treatment isn't easy and is mostly supportive - blood transfusions and drugs to stimulate the production of red cells, platelets and neutrophils.

If you can post the report (anonymised) then we may be able to be more specific. In the meantime I'm sending best wishes.

Jackie

[kathymac5252]

my husband‘s CLL was put into remission only to find out he did have MDS. They attributed it to his therapy of chemo. it is worse than CLL, and within months he had a stem cell transplant because his MDS was high risk. They were concerned that it would develop into AML.

[DaveCll in reply to kathymac5252]

How old was your husband when he had the stem cell transplant? And how is he doing now?

Best

Dave

[kathymac5252 in reply to DaveCll]

He was 69 and except for Graft versus host disease , he is doing pretty well. Going on two years in May