At the recommendation of one our members I called UPENN and asked to speak with a covering hematologist. I received a call fairly quickly, explained the situation and the physician was able to get into my patient portal, read the report and compare it to my 2011node biopsy. He does not think it’s Richters because I am negative for bcl-6, but does agree that I picked up an aggressive marker. He said the FISH and molecular testing will provide more info especially in regard to treatment. He agrees I need to see Dr. Nasta sooner than my June 3rd appointment but felt it won’t be before the results are back. Relieved it’s not RS, but still worried, cause I still have no idea what I’m dealing with.
I want to thank everyone for all the educational links and great recommendations. I have taken today view video, read articles and I feel better equipped to tackle this next round because I have a game plan now. I still plan to seek a second opinion with a lymphoma specialist and have received a number of physician recommendations here. I will keep you posted!
Pushing on, fighting the good fight and so grateful for the support from this group!
Renee
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ReneeSusan
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Thank you! I’ll keep everyone posted as I learn more. Seems I have to wait 2-3 weeks for the FISH and Molecular studies before a definitive diagnosis or treatment, ugh!
I’m pleased to read this Renee. Well done for taking control and moving your situation forward.
As well as the results of the FISH and molecular testing that you are waiting for can I suggest you ask what their conclusion is regarding the high Ki67 and your raised LDH.
I hope you get an appointment soon and more definitive answers to give you that much needed peace of mind.
Jackie, it seems my doctor won’t discuss anything with me until the FISH and molecular are back and that can take 2-3 weeks. In fact, my doctor never even called me. She had her nurse call me after I placed 2 more calls to her office today. The nurse said Dr. Nasta will see me when the results are back. So much for getting to ask questions, or how about getting some reassurance from my doctor that she is even remotely involved in my well being. I assume even if I call another specialist for a second opinion they will want to see the results first. Very upsetting. I called my local hematologist and scheduled an appointment for 5/13 for blood work to check LDH and lymphocytes. She is concerned that the histology changed. I may be able to get some answers from her. I will ask about Ki67 and MUM1. Can you tell me if MUM1 is a marker if multiple myeloma? I thought I read that somewhere in the 20 or so articles and google searches over the weekend.
Thank you again for sharing your knowledge and support!
From what I know, bcl6 is downregulated when MUM1 is expressed so, because you were negative for bcl6 they are checking for MUM1.
MUM1 is expressed in lots of lymphoid malignancies (as well as within the normal germinal centres of lymph nodes) including DLBCL and is a marker of a more primitive cell line associated with poorer prognosis.
It's just another piece of the puzzle and none of these markers can be used on its own, it's the pattern that makes a diagnosis.
I can understand that they don't want to see you to discuss a diagnosis until they have all the results but that doesn't help you. I'm glad you've got a local haematologist who can review your blood results and may be able to discuss some aspects of this with you.
This isn't a diagnosis of Richter's so far, remember that.
Hi Janicelee, I’m hanging in. Believe it or not my doc at UPENN still has not called me. My appointment with her to get the results of the FISH and molecular studies is this Tuesday. Her nurse wrote me and asked what treatment am I considering?!?!? Really, I don’t even know if it’s the SLL or something else, how the hell can I make that call? I am beyond frustrated.
Hi ReneeSusan, it’s Steffie....John’s wife. I hope you are well. I am following you. I read the other day that patients right in this community are getting well everyday. I am rooting for you, special. I wish John would read more. He read some stuff from Aussie Neil. I need to read every day about this entity. I read some folks with bad mutations being in remission now after 3-4 tries. So great. Have a great week. I know you are going to do well and get advice you need. I am praying for us all.
Thank you Steffie. I go to UPENN tomorrow to get results and learn more about treatment options. I’ll post more after my visit. Keep researching this site. Lots of great info here and great people. Some are trailblazers for this disease and have a lot of knowledge and are very willing to help others.
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