NLPHL Relapser - AMA
Hi all,
First time poster here.
Sharing my story in case it's of use to anyone, in particular given NLPHL is not common.
First time I was diagnosed was in 2002, 21 y.o. Stage IA. Treated it with extended radiotherapy (mantle field). I believe/understand this now is an obsolete approach.
Relapsed diagnosis in beginning 2018 (36 y.o Stage IIA). Have now completed 4 rounds of R-CHOP (5th one due this week) and have now been told I am in complete remission (
).
Happy to help anyone that might have any questions on the topic - to the best of my ability.
Best regards!
Comments
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Welcome
I'm glad your sharing here now, Zentao. A random bit of trivia: I have studied Zen and Taoism a lot over the decades....
Your NLPHL journey shows some commanilities with the 'ordinary' NLPHL experience: You got it young, and very early-stage. The other common path is in the late 40s, but again, usually discovered early stage.
Correct: radiation therapy is seldom used for any stage of NLPHL any more, or really any NHL or HL. It is used for 'debulking,' but not a lot else. Because it is a systemic disease (potentially diffused to everywhere in the lymphatic system and bone marrow), the wisdom today is that systemic treatment (chemo) is reqired. Another common feature of your journey has been the relapse, the bane of all indolent lymphomas.
Any yet a fourth common elemet of your experience is that there is virtually no literature or research on how to treat the disease second-line. The use of R-CHOP is interesting. It may be because your first experience was so minor, and the cure held so long, thay your center feels this is a reasonable line of attack. Some doctors are suggesting B&R (Bendamustine & Rituxan), or a sort of NHL maintenance approach. Some woman posted here not too long ago (I have forgotten her name) that she was getting B&T first-line for NLPHL, which reflelcts the ad hoc, random way treatments for it are tested. Ten years ago, it was assumed relapse of NLPHL required stem cell transplantation, but most doctors have backed off from that somewhat. I would not want a SCT response, if I relapsed (if there were reasonable alternatives). My own doctor in 2010 told me that R-ICE without follow-on SCT would be a reasonable choice.
Since you are still so young, hopefully new ideas will emerge over time. You and Bill are walking this similiar path simultanously now. I hope he updates us soon.
max
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Latest Update.
Hi Max\Zentoa
I got a call from the ONC and he recommend to do the PET scan to find out if any other spots lights up and the severity of it. then will do Needle Biopsies but if it's inconclusive then a laparoscopy will be performed.
He also said there is a possibility the PET come back negative then will be doing a CT scan every 3 months to keep an eye on it. I asked about the treatments and options available ,and he said it's too early to make a decision but will be treated and if God will it will be cured. Since I already have ABVD I knew chemo wont be an option for me.
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Hey all,
I was recently diagnosed with Stage IV NLPHL. Slipped and fell on ice, and a CT scan showed lesions on spleen and swollen lymph node under arm. that bought me a PET CT which confirmed those areas along with pelvis.
Biopsy sent to mayo which resulted in diagnosis. I am now deciding where to pusue treatment because my local group has no direct experience due to rarity. Completely asymptomatic despite stage IV, and feeling blessed that there was a random diagnosis and I can tackle treatment while otherwise healthy.
From everything I have read and heard, the chances of remission and survivability are excellent, but the treatment protocol can be a ****. Looking forward to the backside of whatever chemo cycle is chosen!
Any tips, insights, expectations gretaly appreciated!
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CorrectJBat said:Hey all,
I was recently diagnosed with Stage IV NLPHL. Slipped and fell on ice, and a CT scan showed lesions on spleen and swollen lymph node under arm. that bought me a PET CT which confirmed those areas along with pelvis.
Biopsy sent to mayo which resulted in diagnosis. I am now deciding where to pusue treatment because my local group has no direct experience due to rarity. Completely asymptomatic despite stage IV, and feeling blessed that there was a random diagnosis and I can tackle treatment while otherwise healthy.
From everything I have read and heard, the chances of remission and survivability are excellent, but the treatment protocol can be a ****. Looking forward to the backside of whatever chemo cycle is chosen!
Any tips, insights, expectations gretaly appreciated!
Welcom, Jbat.
You are the second new NLPHL patient here in the last two months. You most likely have already read my post above, or the other few threads on the subject here on this Board. Grouping relevant older posts is cumbersome here, but what I and others will tell you is redundant with what we said in the past. What I write I have written before, but the issue at hand is to address your needs, not avoiding redundancy.
You do not say where you might be treateted, but there are few or no places with much experience against NLPHL specifically. For Stage IV, treatment is virtually always what I had ten years ago: 6 cycles of R-ABVD, which is almost always curative; some few places will substitute R-CHOP, with about equal success rates. This will be about six months of infusions, regardless of which drugs are chosen by your doctors. Luckily, since the disease is easily eliminated, a lot of familiarily with it is not required of the hematologist in charge. I am not saying don't look for such an individual, just that such specialists will be rare and difficult to identify.
It would be easier and more focused to respond to specific questions that may arise. The only generality that is nearly always valid is that Staging with indolent lymphomas is less critical than with organ cancers; all that varies is usually the dosing and length of treatment, with higher stages requiring more cycles, which will intensify side-effects for most. It is not easy, but very doable. Not a good deal, but better than not easy and not doable, which is the situation for many other cancer patients.
I had massive, bulky involvement everywhere, from the neck to the pelvic floor, but had never felt a node anywhere, despite over a dozen that were quite huge, compressing my heart and escophagus, covering my spleen, and wrapped around the superior vena cava, plus other areas. I was diagnosed following a trip to the E.R., which within a few days we knew was from nodes against the heart wall. My hematologist said I was Stage III due to a negative bone marrow biopsy, despite nodes inside both lungs. I've never fully understood why that was not Stage IV, but he added that the treatment is the same either way. The responses he gave me matched everything I later read in the best journals, so it was an academic question, not something that changed what needed to be done. He is an Ivy-trained genius with five Board certifications, so I trusted him then, and now.
The first person to look at my first CT (after the cardiologist at the chest pain center) was a general surgeon who does a lot of cancer surgeries. I was with him when he first looked at my CT on his office laptop. His reaction was, "Damn ! You are torn up with lymphoma. I will have to biopsy to confirm, but the only other thing that looks like this is a patient about to die of AIDS." I was stunned, I guess in shock, and sheepishly asked him (a stupid question, given what he had just said) "Is it bad?", to which he then added while pointing at the monitor, "Look at it --it's everywhere." He was smart, if lacking in bedside manner. I walked out of my meeting with him with a biopsy scheduled for a few days later, hardly knowing what lymphoma even was. I did have "B" symptoms, such as profound fatigue and night sweats which yields poorer prognosis. Yet I still to this day have never felt to the touch a node anywhere, ever. And my blood panels were at that time close to normal. Because of my personal journey, I never view anyone else's diagnosis with NLPHL as hopeless.
Please stay on board and share what you learn, as there is not a lot of new information out there for others with this strain. I routinely learn more from new patients than I can ever share with them. The hematological journal Blood has the best academic-scientific articles on NLPHL that I have discovered anywhere, but it is always highly technical and laced with statistical findings.
You can and very likely will be over this within seven months or so, since setting up for treatment wil likely take a month or therabout.
max
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welcome zentao!!
I am a newbie to the nlphl world here as well. i have either stage IA or stage IIIA depending on which group of docs I am talking to. I did get the lovely info at my third opinion that they found a very early cell or 2 of Diffuse Large BCell Lymphoma which is an uncommon occurence of nlphl. So, I am starting R-CHOP next week. I found mine in the shower and it took quite some time to finally get to the diagnosis. My onc thinks I will sail through chemo with a cure on the otherside. My best wishes to you on your nlphl journey!
Paula
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NCI designated cancer centers
Hi JBAT and welcome to the forum. In case you have not seen this list and are still looking for treatment, NCI designated cancer centers can be found here: https://www.cancer.gov/research/nci-role/cancer-centers
As many will stress, you want more than an "oncologist". You want a Hematology-Oncology specialist, aka a "Hem-Onc" doc. Best of luck
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Overview of NLPHLCorrect
Welcom, Jbat.
You are the second new NLPHL patient here in the last two months. You most likely have already read my post above, or the other few threads on the subject here on this Board. Grouping relevant older posts is cumbersome here, but what I and others will tell you is redundant with what we said in the past. What I write I have written before, but the issue at hand is to address your needs, not avoiding redundancy.
You do not say where you might be treateted, but there are few or no places with much experience against NLPHL specifically. For Stage IV, treatment is virtually always what I had ten years ago: 6 cycles of R-ABVD, which is almost always curative; some few places will substitute R-CHOP, with about equal success rates. This will be about six months of infusions, regardless of which drugs are chosen by your doctors. Luckily, since the disease is easily eliminated, a lot of familiarily with it is not required of the hematologist in charge. I am not saying don't look for such an individual, just that such specialists will be rare and difficult to identify.
It would be easier and more focused to respond to specific questions that may arise. The only generality that is nearly always valid is that Staging with indolent lymphomas is less critical than with organ cancers; all that varies is usually the dosing and length of treatment, with higher stages requiring more cycles, which will intensify side-effects for most. It is not easy, but very doable. Not a good deal, but better than not easy and not doable, which is the situation for many other cancer patients.
I had massive, bulky involvement everywhere, from the neck to the pelvic floor, but had never felt a node anywhere, despite over a dozen that were quite huge, compressing my heart and escophagus, covering my spleen, and wrapped around the superior vena cava, plus other areas. I was diagnosed following a trip to the E.R., which within a few days we knew was from nodes against the heart wall. My hematologist said I was Stage III due to a negative bone marrow biopsy, despite nodes inside both lungs. I've never fully understood why that was not Stage IV, but he added that the treatment is the same either way. The responses he gave me matched everything I later read in the best journals, so it was an academic question, not something that changed what needed to be done. He is an Ivy-trained genius with five Board certifications, so I trusted him then, and now.
The first person to look at my first CT (after the cardiologist at the chest pain center) was a general surgeon who does a lot of cancer surgeries. I was with him when he first looked at my CT on his office laptop. His reaction was, "Damn ! You are torn up with lymphoma. I will have to biopsy to confirm, but the only other thing that looks like this is a patient about to die of AIDS." I was stunned, I guess in shock, and sheepishly asked him (a stupid question, given what he had just said) "Is it bad?", to which he then added while pointing at the monitor, "Look at it --it's everywhere." He was smart, if lacking in bedside manner. I walked out of my meeting with him with a biopsy scheduled for a few days later, hardly knowing what lymphoma even was. I did have "B" symptoms, such as profound fatigue and night sweats which yields poorer prognosis. Yet I still to this day have never felt to the touch a node anywhere, ever. And my blood panels were at that time close to normal. Because of my personal journey, I never view anyone else's diagnosis with NLPHL as hopeless.
Please stay on board and share what you learn, as there is not a lot of new information out there for others with this strain. I routinely learn more from new patients than I can ever share with them. The hematological journal Blood has the best academic-scientific articles on NLPHL that I have discovered anywhere, but it is always highly technical and laced with statistical findings.
You can and very likely will be over this within seven months or so, since setting up for treatment wil likely take a month or therabout.
max
JBat,
This is a relatively simple overview of NLPHL, produced by British medical authorities. The protocols it describes seem identical, or nearly identical, to those used in the US.
It has data regarding all aspects of Lymphoma generally also.
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NLPHL relapseOverview of NLPHL
JBat,
This is a relatively simple overview of NLPHL, produced by British medical authorities. The protocols it describes seem identical, or nearly identical, to those used in the US.
It has data regarding all aspects of Lymphoma generally also.
Hi Max, I'm new to this site, but have really found your past comments informative and also a bit calming and re-assuring, so thank you so much for that. I was wondered if you could provide me with some advice based on your experience about NLPHL relapse? My story is that I was diagnosed by accident at age 53 in Nov 2018 after attending hospital for an unrelated issue. Turns out that when conducting an abdominal ultrasoun they noticed that my spleen was grossly enlarged and one test led to the other and in turn to a diagnosis of advanced stage 4 NLPH, which sounds very similar to your experience, although I had no lumps or bumps or any b symptoms at all. I did find out during the course of the initial investigation that my spleen was grossly enlarged (25cm), but I was unaware of this at the time of diagnosis. As treatment I was given 6 rounds of R-CHOP and 2 rounds of Rituxamab maintenance therapy over 2018 and achieved full remission after treatment. I've was in remission for the past 2.5 years, but last week after my 6 monthly check up, my Oncologist discovered my spleen has become enlarged again and has estimated that it is again enlarged to approximately 25cm, although we won't be sure until after my ultrasound on 11 March. I still don't have any symptoms, but he suspects I may of relapsed and that my PET later this month will confirm either way. I'm now really worried and have been imagining the worst because of the splenic involvement. Any advice from your experience would be very much appreciated. Thank you, Steve.
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