Hi.
I would like to ask you what is the prognosis for life of a poor prognosis Chronic Lymphocytic Leukemia. The doctors never informed me that I had a bad prognosis and I recently found out from a friend who looked at my medical reports. Greetings to all.
My IGHV is not mutated.
what years were used for the prognosis? the novel drugs from ibrutinib on have not really been around long enough for any really meaningful statistics for this era.
I only spent eight months with Ibrutinib. When I started the R-CHOP I had to stop taking it. Currently I don't take anything.
Do you know your CLL prognostic markers? Without that information, we can only guess...
Yes. I have all the reports, but I don't know if I can upload it here. They took me to two different hospitals. One was in Spain and the other in France. In neither of them did he talk about bad prognosis. The other day a friend told him that his Leukemia had a bad prognosis and when he compared his results with mine, we both had the IGVH not mutated.
About half of us share that ummutated IgHV prognosis factor. It was historically a poor prognostic factor with the old chemo treatments, but the difference is much less nowadays with the newer, inhibition and targeted therapies.
Do you have your FISH test results? You can upload photos of your reports. Just first blot out any identifying information. Full A4 pages are not very readable either.
Neil
It is true that I can upload images. I will do it. I don't mind sharing my data.
I suggest you ask your doctor rather than reading a report. The doctor will be your best source of info as only they understand the nuances of your particular Cll.
We are all different.
Jeff
Every time I ask the doctors a question, they answer that they have no idea, because they don't know how it can work with the new medications.
Priss, I am a little confused by your query. You've had Richter's which changes CLL into Diffuse B cell lymphoma. This is not usual CLL. Is the bad prognosis not due to the Richter's?
Unmutated IGHV does not mean Richter's is a given. The previous (older)outlook for unmutated IGHV was poor prognosis based on FCR as the default for all CLL treatment, but has that not changed in the context of newer treatments?
At this point what do you have, CLL and/or Diffuse B cell lymphoma?
Hi.
I am currently in remission of the four cancers that I have. Leukemia, Lymphoma, and two breast tumors. Del Richter, I have been in full remission since August 2019. Treated with R-CHOP. Doctors always say that it is very difficult to cure Richter and they do not dare to forecast what may happen in the future. A doctor who follows my case recently told me that it was the first time in his life that he saw a case like mine. I've never seen a Richter case without masses. In France, you think I was caught at the beginning of the disease by chance.
I was told that with my markers if I’d been diagnosed just a few years ago I would not have lasted more than a few years. Truth is that right now firstly many people last a decade or more before needing treatment. Then they might have a remission of a decade before needing second treatment. Of course there’s no guarantees and the uncertainty can be hard. But all the current publications are looking backwards. And even the effects of FCR let alone the newer drugs hasn’t fed into the survival statistics yet. But all population studies suggest we are living much longer now than a decade or two ago. So just hang in there. Let yourself grieve a bit. But also cling to hope. I plan to be around for a couple of decades more at least.
It’s very important that you work with doctors who you trust. I switched doctors several times until I felt safe and happy.
My case is handled by different doctors, since it is very complex. They do not understand how in such a short time I could make four cancers. They also do not understand how I could go into remission of the four. I am sick with the joints from the treatments, but I find myself enjoying the remissions. I'm not worried about leukemia or breast cancers, but I do panic that the Richter returns
i just realized you were in france. i don't know what therapies or drugs available to you
For leukemia I was treated with Ibrutinib. For the Ritchert with the R-CHOP. For breast cancer, radiotherapy and hormone therapy
I understand your confusion. You have been through a lot. I hope you get answers to put your mind at ease. It sounds like you are getting good care.
The first person I met, who has dealt with Richter's, I met in 2012. She had already been treated and was in remission. She is still in remission and is doing well!
Thank you very much for the information. People who have been diagnosed with Ricther are contacting me and are desperate. It is important to support each other. We are few but we have to give hope to those who have just been diagnosed.
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