I'm not really new, but think this is my first post. I've been one of those lucky CLL people who has lived with this disease for 18 years with minimal issues and a long W&W, although i'm a 17p mutated. 4 years ago things had progressed to the point where i needed treatment and now i'm on Venetoclax low 50mg dose that has been great. My blood counts and really all my numbers are now almost perfect and I feel great. Here comes the however - two months ago I noticed a lump under my right arm which i immediately reported to my doctor who told me not to worry, it was likely an enlarged lymph node and to keep an eye on it. Since then it has grown to over 5cm and at times has been uncomfortable. Recently, I had a fine needle aspiration at MDA in Houston with an accompanying FNA report . Although all my blood counts and numbers are unchanged (and all within normal ranges) the aspiration reported (quoting from the report) "high SSC/FSC as well as strong expression of CD38, suggesting transformation to higher grade tumor (such as prolymphocytic or Richter)". My doctor doesn't seem alarmed by the report but also hasn't talked to me personally and won't see me for 2 1/2 weeks. I have no other symptoms but the node isn't going away and now there's a new enlarged node forming near my neck above my collar bone. The nurse doesn't think it's anything other than a CLL side effect. In the absence of my doctor fully communicating to me, I'm looking for assurances this is normal CLL stuff - although unique in my 18 years experience with CLL. Also, any help translating the quote from the FNA report above would be very much appreciated. Not sure what high SSC/FSC and strong expression of CD38 means since that seems to be common within CLL, right?
CLL Transformation - Richter's? : I'm not really... - CLL Support
Do you have a recent blood test of your Lactate Dehydrogenase (abbreviated LD or LDH)? That usually (but not always) jumps several times your base level with RT.
Given you are otherwise feeling well, that's an encouraging sign and one would hope that MD Anderson CLL management would be more than adequate in this situation. However the fact that this is happening when you are on Venetoclax and whether a Fine Needle Aspiration could have missed definitive RT cells, to me, would drive the urgent requirement to have a second opinion. In your situation, i would want to know why your MDA specialist remains unconcerned. I hope he his right!
Paul, the FSC vs SSC refer to the Forward scatter and the Side scatter density plotted for gating, which is simply selecting an area on the scatter plot generated during the flow experiment that decides which cells you continue to analyze and which cells you don't.
So there is more to study to determine what is happening with your CLL. (i don't know anything about this, except having the ability to search and select some explanation.
I am not a Dr. or scientist, just a CLLer--so there may be better explanation from some who know this stuff a bit more.
The explanation I have given is a combination of words from two sites. The following link is one that you may want to look at to get an idea of what the Dr. is working on.
Until proved otherwise I would be very concerned that this enlarging LN could be Richter's and so every week waiting is a worry. 5 cm is not an insignificant node and now you have another one enlarging.
A FNA is tricky because it samples such a small amount of tissue and does not show what the LN architecture is like, crucial in lymphoma diagnosis. I would not be confident that this has excluded RT.
Please be more assertive in getting this investigated more, including a full biochem profile and a complete LN excision if possible.
Good luck and let us know.
It's amazing and disappointing to me that 7 days after my aspiration and 5 days since they sent me the scary FNA results with the words Richter and transformation on it, the doctor has not replied back or called me. I've had a wonderful experience at MDA and am completely mystified by the lack of communications i'm experiencing now. Dr. Keating was my doctor there for 14 years (awesome) and now I've been assigned to someone new with leading CLL credentials and even deep experience with Richter's, but doesn't seem available or even at MDA most of the time.
Paul. I was with Dr Keating as well and he spoiled me for sure. During my rough patch with hemolytic anemia he was always available by phone or email to speak with me, sometimes on very short notice. It was a privilege I was careful to not abuse, I only reached out to him directly on what I thought to be emergencies. I hope your doctor or one of his assistants can give you more information.
I also hope for you that maybe this is one of those deals where your doctor has looked at everything and is satisfied its not Richters. I only know what I have read about Richters, from what I have read usually you would be feeling bad as well and have a pretty big jump in your LDH.
I think I would be politely persistent with your doctor's staff in explaining to them you need a human to talk to to answer some questions and give you peace of mind. Their patient bill of rights promises a prompt response to your concerns. I get that its a catch 22, no one wants to be "that" patient who complains about access.
If your doc is not available, it seems someone with his staff ought to be available to discuss your case with you
Paul, you do need to have a conversation with someone in the Drs. office. If there is an RN, that would be a good way to go for a first conversation. Just call and request a call back stating you are very concerned about the report and need to have some understanding.
Best wishes! And, please give us an update when you can.
Not wanting to scare you here Paul, but it concerns me that medics are assuming that the lymph node is to so with CLL. A a female, my immediate thought was could the lymph node be in breast tissue, because we have breast tissue under under our arms. I would ask for a referral to a breast doctor, to make absolutely sure that there isn't anything going on in breast tissue. I have come across several people whose doctors have assumed new symptoms are related to an existing condition, to find out months later that they aren't. Good luck with all of this , Liz
Hi Team CLL - I did talk to the PA last night and have scheduled a follow up biopsy on the node and PET as they need more material to determine what's really going on. They have determined it is CLL related and could be a new resistance to the Venetoclax, a more aggressive form of CLL, or, dare I say it - Richter's. Not great news, but a relief to have the conversation with someone knowledgeable. I'm voting for issues with Venetoclax. So back to Houston on the 14th and 15th for testing and back again on the 20th for a meeting with the doc after all the results are back. Thank you to everyone for your comments and support!
Good luck Paul. I am glad someone got back with you. My experience at MD Anderson has been very positive in terms of them communicating to me on my case so I am glad to read they did follow up with you. It sounds like Richters is only one of several possibilities and I am hopeful for the very best outcome for you.
As a side note Paul, my grandmother lived in Bradenton. We would visit her every summer when I was a child and at least one night of the trip we would have dinner at the Sarasota yacht club. I remember being fascinated with the lobster tank and my grandmother buying me Roy Roger drinks, coke and cherry juice.
On my trips to Sarasota now I enjoy the stone crabs and will have a whiskey sour for a cocktail in honor of Grandma, she loved her bourbon. Bourbon must be good for you, my wife's great aunt from Tampa just passed away at 105. I met her at her 100th birthday and asked her the secret to her longevity. For her is was to never think bad thoughts and to have bourbon every day. I have the bourbon part down, still working on the no negative thoughts.
tendancy to richter's is in large part determined by chromosomal and mutational status. tris+12 , notch1, ighv4-39 and atm. if you are all those things and the docs aren't taking you seriously i'd be out of there yesterday. not saying that only that situation determines richters but that combo is almost a 100% chance of developing a richter's ....but still as you say in deference to your worries they owe you at least a few minutes of explanation and courtesy to explain why they don't feel you have anything to worry about. a lump could very well not be richter's it could be an infection, a progression of the cll not richter's hoping you get a good response soon!