I posted a related question a few days ago but I am increasingly concerned about a Richter's transformation so altering it a bit to see if anyone can shed more light...
Cll diagnosed 2012
Bendamustine/Gazyva 2015
IGg steadily declining, now at 74
September 2019: atypical lymphoid proliferation resulting in terminal ileum and right colon resection, SUV 19, all blood test normal, no Cll in bone marrow, also tonsil/lingual area SUV 18 but nothing seen in endoscopy. No b symptoms. Pathology of colon described as "challenging case-florid lymphoid proliferation deep in submucosal tissue, concerning for low grade B cell lymphoma such as follicular or emzl. However, immunostains do not show any immunophenotypic abnormality and no evidence for B-cell clonality. No coexpression of CD5, CD10, or CD23. CD19, CD20, and FMC-7 positive. Negative for BCL2 and BCL6 gene arrangements within referred tissue section."
June 6 2020: discovered palpable lymph nodes in left side neck, LDH 93, blood test still normal, still no b symptoms.
June 16 2020: ultrasound reveals 7 lymph nodes in left side of neck varying in size fro <1 to 2.1 com.
The reason I fear Richter's is:
-doesn't richter's often originate in colon?
-doesn't richter's present as group of enlarged nodes in one area? I don't read that other lymphomas present like that?
-the high SUV of 18 in the tonsil area could have indicated an aggressive lymphoma but would it take 8 months to advance?
-could the colon be a separate issue and transformation occur at another single site?
Sorry for the long description. I have seriously gone into full out panic mode.
Any help would be greatly appreciated.
Thank you,
Misty
Written by
CoCoLuna11
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Richters Transformation is clonal, so whatever happened last September would not have been Richter's. Further, it tends to appear where there are lots of lymh nodes, so arising in the colon would be unusual. If Richter's started last September you'd be far more aware of it by now and very ill. That you have no B-symptoms and a low LDH are very encouraging signs.
Oh, thank you Neil! What about the fact that a group of nodes in one area of my neck are growing? Is that not more common with DBCL? Or can other leukemias/lymphomas do that?
I’ve experienced a little of what you are going through, low level anxiety probably accounts for why I am wide awake at 2.30 am. - I expect to get results of biopsy taken last Friday - some time today.
I have been reading your posts and you have been through A LOT! Okay, sepsur. It’s 6:30 pm my time and I am going to try to think less about my condition and more about you getting back great news! I’ll probably be up all night so it is going to be a lot of positive juju I’m sending your way💚
Four years ago I was still coming to the end of a two month coma, I don’t know if you know anything about the mechanics of a coma?
Basically is quite common to wake up unable to move due to muscle waste, suffering a particular delirium called hypoactive ICU delirium ( caused in part by the paralysing agents used to put you in a coma). These ‘fantasies’ are incredibly real, often darker than the worst sadistic horror film ( I don’t know why) and often having themes of capture & torture. Out of these black dreams I had one remarkable dream full of light. I am being taken on a spirit walk down the Amazon, through the currents we are all carried, surrounded by all the fish, birds & animals, eventually being sucked up into the canopy of trees where I am amongst a tribe who are chanting for me - it is like we are on one of those huge fairground wheels facing each other in a circle as we pivot & spin up in the trees.
Unknown to me ( because of being comatose) my family are in contact with my friend, Brother Paul McAuley. He had been working with various tribes and one young man in particular, Merihino, who he believed could move energy around the place. My family would tell Brother Paul which part of me was failing and Merihino would concentrate on sending healing energy to my heart, lungs etc etc....
So my point is about the power of others prayer, good vibes etc etc is more acceptable to me as a conceptual truth ...and I’m a sceptic by nature.
Those fantasies sound incredible Sepsur, they must be terrifying and feel very real. I think the Amazon one sounds so lovely and comforting. I think there is so much we don't know about consciousness and energy.
I support a charity called Survival International that works with indigenous people in protecting their land and way of life and I had read about your friend before. Very sad news, he was doing valuable but dangerous work in encouraging young leaders.
I think you need to speak to your consultant. This forum will not have the expertise, or qualifications to help. Get advise from the experts who can decode the results.
doesn't richter's often originate in colon? No, it doesn't often but lymphoid tissue is present in every part of the body and lymphomas can arise anywhere.
-doesn't richter's present as group of enlarged nodes in one area? I don't read that other lymphomas present like that? No, not always. It can arise in the bone marrow or any other area. Other lymphomas, including CLL, can present like that.
-the high SUV of 18 in the tonsil area could have indicated an aggressive lymphoma but would it take 8 months to advance? If that was an aggressive lymphoma then almost certainly you would have more symptoms in that area and, from what you've said, you have none so unlikely to have been an aggressive lymphoma.
-could the colon be a separate issue and transformation occur at another single site? Yes
Generally with Richter's people feel rather unwell and B symptoms are common. Raised calcium and LDH can be other indicators. The LNs in your neck may be growing because of your CLL and no other reason.
The most important thing is that you will have a LN biopsy scheduled and the histology of that node will tell your doctors everything they need to know so that they can plan whatever treatment you need, if any. They are doing the right things.
Thank you for your reply, Jackie. I know it's premature to worry so much but I (stupidly) read the anecdotal reports of people who have transformed that have no B symptoms and/or have a low LDH....Just need to wait it out I guess.
There will always be people whose lymphomas don't read the books and know how to behave but the majority of people will have symptoms. Common things are common and Richter's is not common.
Try not to panic, your biopsy is scheduled and you will have an absolute, definitive answer very soon.
I couldn’t get an appointment until Thursday and that’s just for a consultation for biopsy, not the actual biopsy. I have a call in to my specialist to see if we should wait that long.
In the mean time I have been having some night sweats. I downplayed them initially because i tend to be a warm sleeper and I did experience them last fall when I was so stressed about the colon stuff. They only lasted a couple nights so I assumed stress brought them on but I’m getting them more now... not every night and not drenching.
Having a really hard time holding it together. Trying so hard to act normal for my 11 year old daughter😞
And another question... I know SLL can turn into CLL but can a person develop SLL after having CLL? Just wondering if these nodes could be isolated CLL or SLL since blood work is normal and there wasn’t any CLL in marrow back in October.
Mr dad's cll transformed into richter's syndrome and it definitely started in the colon, he got ill very quickly and went down hill very fast, I think if yours had transformed you would definitely know by now, hope that helps?
I’m so sorry your dad and you had to go through that. I do appreciate you sharing that with me. I agree and I can’t help but feel if this were richter’s I wouldn’t be able to run in the treadmill today (not exactly a marathon, only 2 miles, but still). I’m sorry you got it too. My cll is familial too- my sister is in early stages. I hope you are well.
Hi CoCoLuna, check my posts. I had an ultrasound biopsy recently. Maybe it will put your mind at ease a bit although I doubt. You just need the biopsy done and get the results I think otherwise your mind won't get a rest. I hope it's nothing more sinister just your CLL. I think it took about a week and half to get the biopsy done (after the consultation), then another 10 working days to get the results (UK). This was at the very peak of the covid pandemic so under normal circumstances it might have been even quicker I think? All the best. Let us know once you have an answer. X
Poodle2, I read your posts and that does help-thank you! I can totally identify with the anxiety you were feeling. This Covid crap adds just another layer. And so does being a mom to little ones. I am so glad your tests went well! It brings me hope
Hi haven’t followed your whole story I’m afraid but can definitely relate to parts of it. The tonsil flare up drew my attention I had my CLL develop as a lymphoma in my tonsils. They grew very quickly so much so they started to choke me quite badly. I also have had similar growth and infections in my lingual tonsils. In fact a lymphoma specialist told me they thought my tonsils most likely were an agressive lymphoma (presumably a transformation) When a tonsil is infected it will also be “hot” on a PETCT scan as will any source of infection. So anyway when they agreed to take my whole tonsils out it turned out that the whole thing was just CLL no transformation at all. So I suppose try not to assume the worst would be my messsfe. Get the tests done (see if they will take the whole tonsils out and if they do make sure you get difflam spray to relieve the pain). It was a huge relief to hear it was “only” cll.
Hi Adrian, very interesting. My tonsils were taken out as a kid but apparently there are other tonsils that make up the Waldeyer’s Ring that are still there. I really hope it’s CLL with me too! Or the Progressive Transformation of Germ Centers I had in my colon. I have a core biopsy on Tuesday. I’m not sure the core will be enough to figure it all out but I guess we’ll start there. Your message is timely as I am sitting here thinking they are getting a little bigger- thanks!
I need help in this area too. I welcome all comments. I was diagnosed with CLL in 2008 from a routine blood draw. WBC count high. I was told I had CLL and we will W&W. In 2014 I had bumps on my inner eye. A biopsy showed MCL. My hemotologist did not seem too worried and said it was Richeter. In 2014 I had a throat biopsy, also was MCL. In August of 2019 I had fluid in my pluera. It was MCL. It is time for treatment. My original hemotalogist is saying Imbruvica. I just got a second opinion at the University of Michigan from a lymphoma specialist. He says I have indolent MCL. I am so confused and need advice. I ready to start some treatment. He wants to put me in a trail of lenalidomide and rituximab with venetoclax (this is the new drug for MCL). Not sure if this is the correct way to go. I welcome all replies with a loving heart! Thank you!
From what you shared earlier, I gather CLL is more of an issue than your MCL? If so, I would concentrate on drugs that are known to work on both CLL and MCL and avoid those that don't do so well on CLL. For that reason, I would be very cautious in this circumstance with Lenalidomide/Revlimid. That's because it has fallen out of favour with CLL, due to disappointing trial results. There was considerable hope that Lenalidomide would provide an exciting new benefit (at the time of the trials, when we didn't have non-chemo options other than Rituximab) of actually improving the immune system post treatment. Sadly the side effect profile was found to be unacceptable.
Thank you for that information!!! These are things my doctors have not shared with me. I will definitely have new questions for my doctors from your reply!!!
- Scant lymphoid tissue, non-diagnostic for lymphoma
- Flow cytometry
- No monoclonal B-cell population or aberrant T-cell antigen expression
Thrilled that nothing aggressive has shown up. Still mildly concerned that another set of mystery lymph nodes have shown up with no real diagnosis. Maybe another case of follicular hyperplasia/progressive transformation of germ centers??? Plan is to continue to monitor.
I am starting ivig for my low IgGs.
Anyway, thanks for everyone’s insight and well wishes ☺️
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but the majority of people will have symptoms. Common things are common and Richter's is not common.
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