Here is an up date on me. I have seen my hematologist on Thursday September 10 and the report I received is that I have CLL and Lymphoma both. They have also found I have diverticulosis from my CT scan. Its a W & W for now. Trying to correct the diverticulosis with proper diet and exercise. My numbers are not high with CLL (18) but the hematologist does feel I have had this CLL / Lymphoma since 2017 when my lymph nodes were swollen back then. My hematologist also told me some people only have CLL but Lymphoma does go hand and hand with CLL. I was told there are a lot of good treatments out there now a days and that it "could" be years before I would ever need and treatments and by that time it could be better yet! Lets hope he is correct on that one! It did give me a feeling of hope for the future.
Hematologist meeting: Here is an up date on me... - CLL Support
Hematologist meeting
So does that mean you have CLL (in marrow) and SLL (in nodes) ?
I never heard of that. Maybe someone else can clarify/remark about that. I have CLL and had nodes but not SLL.
Hopefully you have a long W&W. 💕
"CLL" and "SLL" should really be CLL/SLL. Historically, if a pathologist diagnosed it from a node biopsy, it was designated SLL and if diagnosed via a blood test, then CLL Same disease since a 1994 reclassification, same treatments, other on the vary rare occasions when it originates in a lymph node and is detected before it becomes systemic. It can then be potentially cured by radiotherapy.
Neil
Thank you! Having the Doctor say I could be years on W & W he surely must have meant CLL is a type of Lymphoma? If not , treatments would have been started or he wouldn't have said there could be years before treatment is needed.
CLL/SLL (Chronic Lymphocytic Leukaemia/Small Lymphocytic Lymphoma is one of the many Non-Hodgkin's Lymphomas of which there are over 60 different types! en.wikipedia.org/wiki/Non-H...
You are just one of many who have been confused about what you actually have and several previous members have also thought they had two blood cancers.
The name CLL/SLL contains clues to the nature of this blood cancer; it is chronic, so slow growing, with most of us not needing treatment when diagnosed, it's lymphocytic, caused by B-lymphocytes, it can express as a mixture of leukaemia (found in the blood) and lymphoma (found in lymph nodes) and the cells are small (just a bit larger than a red blood cell), so they don't cause blood circulation problems, even with extremely high counts. The highest lymphocyte count I've heard of is 1,400x 10^9, with a normal lymphocyte count being under 4.0. We have members still in watch and wait with lymphocyte counts above 300.
Neil
Thank you for explaining more clearly. Of course when we go through something like this we tend to mix things up or get things wrong. I do believe lymph nodes are involved but not in a way I thought. And yes, I was told there are people in the hundreds 300-and up.
Susie
Lymphocyte count of 1.4 trillion? Amazing!
Thank you! When I ask the hematologist what I had exactly....he said CLL/ Lymphoma. Perhaps he did mean CLL is a type of Lymphoma and was saying it was either - or ??? It did strike me funny that he would say I could have many years to go before treatment if I would ever need treatment cause my count is low (18) but then the CT scan did show slightly enlarged lymph nodes.
It might be you just misunderstood what your doctor was telling you. Cll is a type of lymphoma. When our Cll cells accumulate in the blood, that’s the leukemia characteristic of Cll. When our cells gather in the lymph nodes, that is the lymphoma characteristic.
The fact your doctor told you it could be many years before you treat is more consistent with Cll than some other sort of lymphoma. Cll can transform into a more serious lymphoma, but your doctor would be treating you in that case. So again, it might be your doctor was describing your Cll as a lymphoma, which it is. Cll is one of several type b-cell lymphomas.
Thank you . I am honestly thinking I must have mixed things up cause the Doctor did say I could go years on W & W. Perhaps what he did mean was CLL was a type / form of Lymphoma. I do know the Doctor giving the CT scan said what was on the report was Lymphoma but maybe that is what was meant as part of CLL.
Oceanbly, the following posting with videos for some articles, was especially compiled for those new to CLL. I hope it will help you in your early learning stages of Chronic Lymphocytic Leukemia----as you can see by the name, Lymph nodes are involved and are the Lymphoma part of our Leukemia which in other blood cancers called Leukemia do not involve the lymph nodes in the way ours are impacted.
I hope the posting with all the links will help you to see the complication of the cancer, but also to recognize that it is Chronic and Watch and Wait can be a time to help you to get in the best shape you can before any treatment (if that has to be--there are about 30% who do not ever reach a need for treatment).
The articles can trigger questions, and we are here for for each other, so please ask any questions that arise.
Best wishes with getting the diverticulosis under control---it can be controlled. I have a friend who has done well in controlling hers for years.
Thank you cllady01. Hugs Xo
Hi, I was first diagnosed with CLL in 2013. My initial readings were low...around 8. However, they slowly but surely climbed as did my levels of extreme fatigue and general unwellness.
After a lengthy bout of tests to exclude any other reasons for my extreme fatigue my Haematologist recommended I begin having chemotherapy treatment via Acalabrutinib in August 2020.
Five weeks later I am a new man! Side effects for me were very minimal. I am in a clinical trial for the Acalabrutinib for a four year period. I am so glad I was accepted into this trial as I already feel so much better.
If you are suffering from extreme fatigue I strongly recommend obtaining a treatment such as mine. Life has become worth living again!
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