Likely.....
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Today is one week past surgery....still a nothing burger here. And this is the same well-regarded lab that posts at the top of their webpage that "Most Results are Complete within Forty-eight Hours or Less."
I have learned one thing that I was unaware of in the past: Flow Cytometry, which is very fast (due to the computer technology employed), is useful only against NHLs. I got my Flow Cytometry results the day after surgery, and it noted that the results show that I do not have an NHL, but then adds that HLs take much longer, and require slide staining. It references the government protocols that certify this view. There is some comfort in knowing that I do not have an aggressive NHL, but there was no real fear of that going in to surgery. Diagnosis of both NLPHL and P.T.G.C. is extremely tricky and time-consuming -- largely because the slides are virtually identical. As I notyed two years ago when I was diagnosed with the PTGC the first time, the diagnosis took two labs and almost a month of time.
My PTGC has not presented at all the way the NIH describes, and if the verdict is PTGC again, I'm going to demand an additional lab review all of this..... I am thinking probably Emory or Stanford.
Thank you to all for your follow-ups,
max
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Patience is of the essence, Max...
While waiting for definitive results on "popcorn" smears to comply with established diagnostic procedures, here is a link to an interesting article. Looking at the percentages of CD57+ and CD4/CD8+ T cells on your flow cytometry results may give you an indication of where this is going.
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Max - sorry for the frustration in getting a definitive diagnosis. I had never heard of PTGC before your posts. I asked my nurse about it. She knew what it was but had only encountered it once. She said that case spontaneously went away. Here is hoping that is the case for you! Hang in there buddy!
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This is excellent, PB. I have already read it and forwarded it to my hematologist. MyChart version of my Flow Cyt is probably inadequate to research this, so I will be requesting a fully itemized report from them. Both of my Flow Cyts DO report T-Cell abnormalities, but state that it cannot yield a diagnosis.
Profound appreciation,
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Finally, a definitive diagnosis: It is the NLPHL again, Stage 3. Doc said Active Surveillance not an option, since too far along. Proposed beginning immediately with Rituxan, and adding Bendamustine later only if needed. She also gave me a printout that says the W.H.O. has reclassed NLPHL as a NHL now. So in essence an alternative variant of Follicular NHL. I am well and glad to finally be on the road to recovery of my well being.
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Well, you needed a challenge, right? As always, there is comfort in knowing what it actually is. The enemy being unmasked, a strategy can be mapped out and action taken. I do note that articles describing PTGC have links to NLPHL. Hmmm. With your history of NLPHL, where on earth did the PTGC differential come from? You are right that it was not acting like PTGC.
The good news is that the tumors almost always melt like ice cubes when the Rituxan hits them. And, with the much-anticipated reclass to NHL, you will NOT receive the toxic combination that you originally received. Even if Bendamustine is needed later, it can be very effective. It was part of a combo that eliminated two T-Cell NHLs in my case and reduced the 23% MDS cells in my marrow to 2.6%, or minimum residual disease.
So good will come from the bad - as it always does if we have the patience to wait.
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Max, I am sorry - although not all that surprised - to read your latest news. At least, you now have an actual diagnosis and a plan -and I hope the fatigue that has been plaguing you clears up so you can resume life as usual.
As you well know, Rituximab, not being chemotherapy, is fairly easy to bear. You will of course need to take some extra precautions regarding infection as it will knock out your immune system. As for Bendamustine, it is generally acknowledged as "easier" than CHOP or ABVD - which I believe you've had as your first regimen.
Has your hematologist discussed the grounds for the interim PTGC diagnosis in light of this relapse?
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Hi Max, I agree with the others, I’m sorry you have to go through this again but at least the guesswork is over and an answer to the fatigue which is always unsettling and hard to deal with. You probably remember that Bill’s first protocol was Rituxan/Bendamustine. He was practically on his deathbed at that time and after the first infusion he was feeling so much better. He had no after effects at all and was in remission for two years, which was a lot for MCL. I am sure it will be more long-lasting for you. Another benefit is that Bendamustine does not attack the hair follicles so you won’t lose any more hair than what you have now 😉. I am sure you will be back to your old self very soon.
Becky
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Thanks to PB and Po both. PB, I had Rituxan with my ABVD, since NLPHL has a lot of CD-20 -- the only form of HL that expresses CD-20. I have never had Rituxan singly, and know that it is less pleasant than a Cuban cigar, but more pleasant than CHOP or ABVD. How we got on the PT trac is rather complicated, but Best Practices were followed all along. And, it is known to occur for PTGC and NLPHL to exist simultaneously in the same individual at the same time. Luckily, the confusion here is limited to extremely rare, odd-ball cases like mine. There is a comment in my results from today that state that the nodular masses "look different from what is ordinarily observed in NLPHL." It is within the realm of possibility that the NLPHL is relatively a new development. I'll never know.
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The move of NLPHL from HL to NHL is in Edition 5 of the W.H.O. catalog of hematologic neoplasms.
Edition 4 had been in effect since 2008, with modifications/updates over the years. WHO has a proposed new name and acronym, but it is (I believe) up to national authorities regarding exactly what they will do with this WHO insight. I believe in the US it will be a decision for the N.I.H. (National Institute of Health).
I will send a more exact WHO address later today.
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Portions of cancer treatment remain in the stone age. For this reason, it is very important that patients consider clinical trials. One "hopes" that the N.I.H. will quickly update as well, as there is no reason to fry patients' lungs with bleomycin if it will do them no good. The same situation applies with Adriamycin - the heart damaging drug still used as first line therapy against most non-Hodgkin's lymphomas. So many of the new drugs are far less toxic, but cannot be used until one tolerates the old school, damaging drugs. Well, humans make up bureaucracies and humans are broken beings, so change is slow.
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The World Health Organization Classification of Haematolymphoid Tumors, Edition 5 (2022), suggest changing the name to Nodular Lymphocyte Predominate B-cell Lymphoma, or "NLPBL".
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Cannot find anything (yet) at the W.H.O. website regarding this, as they seem to be preoccupied with "current events" shall we say. However, I do remember my hematologist mentioning this 2-3 years ago based on research into the immunophenotype of NLPHL at that time. Too many differences from Hodgkin's and too many similarities to B-Cell NHL. Good news, as the more advanced, less toxic B-Cell regimens can be employed against it. And if you should ever receive Bendamustine (I actually hope you do not) we will have one more drug in common. I would almost assume that you have seen this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8234802/
"Pitfalls in the Diagnosis of Nodular Lymphocyte Predominant Hodgkin Lymphoma: Variant Patterns, Borderlines and Mimics"
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First Rituxan infusion was yesterday -- no issues. I feel well
max
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Max
All cases are different but I have had 30+ infusions of R over several years and the only ill effect was a sinus infection. Doc said R may or may not have been the cause. First dose I had an allergic reaction but after that nothing. Should be smooth sailing. Much better than the chemo I had which left me with multiple side effects. And you get to keep your hair!
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Yes, exactly correct. Onc will review the PET after the four doses and then chart a course from there, which most likely will be some form of Maintenance. In the unlikely event that the R is not doing very well, the most probable next step would be B & R.
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A man who thinks as I think.....
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