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Newly diagnosed with NLPHL Stage III, considering treatment options

RPI-Chris's picture
RPI-Chris
Posts: 4
Joined: Aug 2019

I am still waiting for pathology to fully deliver a confirmation of NLPHL, but my oncologist said that from the tests so far that it is most likely NLPHL. I don’t yet have a reommended treatment plan, but I’m told that the 3 most likely possibilities are R-CHOP, R-CVP, or R-B. I am interested to hear from any that may have had these therapies what their experiences have been. I’m most concerned about long lasting side-effects, most concerning to me are lasting heart or lung damage.

I’m still a bit overwhelmed by what I’m facing, but from the information that I have gathered so far, I think I have a good prognosis. I’m doing my best to keep my spirits up.

Paula Camille's picture
Paula Camille
Posts: 4
Joined: Aug 2019

Interested to hear what everyone has to say.  Is there good data for Complete Response for just the combo therapy of R-B With stage 3 NLPHL?  Ive also read that there is good support from National Leukemia and Lymphoma Society.  Does anyone have experience with using this group? 

lindary's picture
lindary
Posts: 650
Joined: Mar 2015

I had follicular hon-Hodgkins lymphoma and was treated with 6 cycles of R-Chop. To me the hardest part was the P, Prednisone. I had to take 100 mg for 5 days. I found that the first day I stopped taking it to make sure I took a good nap. That made the crash not quite as bad. I had no side effects.

LLS is a good resource.  Also LRF. 

Paula Camille's picture
Paula Camille
Posts: 4
Joined: Aug 2019

Thank you Lindary.  This was helpful.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

Hello Chris and Paula,

I was diagnosed with NLPHL in August, 2009. Extremely advanced Stage III, huge nodes everywhere from the lower neck to pelvic/groin region. Hematologist told me it was more widespread than most Stage IV cases, but was classified as III since no bone marrow involvement.

NLPHL has profoundly little research.  No clinical trials, ever.  Research follows the numbers and the percentages, and NLPHL is about 1% of all Lymphomas diagnosed annually, so no priority.  In decades past it was classified by the W.H.O. as an anomolous indolent Non-Hodgkin's, since it lacks classic HL characteristics.  Think of it as a very slow-moving Follicular "with some twists."  Most nations today again regard it has HL, however.

The classic, and still most common treatment is R-ABVD.  A few cancer centers use R-CHOP instead (a mostly NHL combo) due to its NHL-like characteristics.  Bioth work very well in most cases.  There IS a trernd toward treatment with "B&R" (bendamustine and Rituxan), due to lower toxicity.  Long-term success is not yet compiled, since this new approach is too new for far-out pojections.  My read of data so far it that ABVD, although harsher, has better long-term relapse avoidance, but this is not firmly established.

NLPHL is the ONLY HL that presents the CD-20 cells, which is what Rituxan kills, and why NLPHL is the only HL that is perscribed Rituxan.

The disease is relatively easily put into C.R. (complete remission), but is prone to relapse within 15 years, at about 15%-20% of all cases.  Very generally, the harder it is slammed with first-line ABVD or CHOP, the better the long-term prognoosis against relapse.  Feel free to Private Message me, or please continue writing here.  I learn more than I share,

max

Paula Camille's picture
Paula Camille
Posts: 4
Joined: Aug 2019

Max, 

Thank you so much.  As you probably figured out, I am the mother and both of us are looking for real life experiences regarding treatment.  Since R-CHOP has documented AE's with heart damage dating back to 2010 we are wondering if the newer regimens provide some type of cardiac protection or is this now a relatively rare occurence in a healthy male <50 with no previous hx.  Also, can you comment on how you prepared for the side effects of abrupt predisone dc?  How bad are the side effects in terms of disruption to daily life, work etc?

Paula

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

Paula,

I used R-ABVD, 6 cycles and months, at 12 infusions.  ABVD does not include Prednisone, but I know that Prednisone sucks very badly.  It is often described as one of the worst aspects of CHOP.  A very large assortment of chemo drugs are accompanied by Prednisone, among them CHOP and EPOCH, and dozens of others.

Both CHOP and ABVD contian Adriamycin (Rubex), which can in limited cases induce congestive heart failure symptoms.  This is rare, and occurs in only about 1% or 2% of all users.  As such , it is not a large cardiac risk.  

Vincristine (in CHOP) and Vinblastine (in ABVD) routinely cause significant neuropathy, which in some cases clears, and in others does not (mine is still bad at 10 years out, but this is unusual).

Bendamustine is a conventional cytotoxic (chemo) drug, and as such is no walk in the park itself.  Expect potential for nausea, extreme weakness, confusion, and hair loss, and perhaps other symptoms also.  Rituxan routinely causes cold-like symptoms, breathing issues, and joint pain.   If you wish to choose B&R, your oncologist will be the one to give you a full assessment and authorize it.   Bendamustine is being tested with a wide variety of Lymphomas beginning in the last 10 years or so.

As a layperson with no medical training, my view from reading is that B & R is probably not a bad choice.   If/when NLPHL relapses, it is usually easily put back into full remission with other combinations or SCT.   My view of relapse is that a 20% chance of relapse means an 80% liklihood of NOT relapsing; hence, relapse is much less likely than likely.

Always available,

max

 http://chemocare.com/chemotherapy/drug-info/bendamustine.aspx

 

RPI-Chris's picture
RPI-Chris
Posts: 4
Joined: Aug 2019

Thanks Max for sharing your experiences. Still waiting a final Dx from pathology to confirm NLPHL. Glad to hear that your Stage 3 NLPHL was able to be put into complete remission. So far my doctor has not mentioned R-ABVD as an option.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Joined: May 2012

A lot can happen in ten years, if we're lucky.  In 2009, ABVD is ALL that was mentioned against NLPHL, except for a few places that preferred CHOP.  It appears to still be mainstream against more advanced cases.    Your mom mentioned misdiagnosis and having had the disease a long time.  That was my experience also. My onc said that I apparantly had had the disease a very long time.

ABVD was developed as a milder combination to replace the older MOPP, that was the standard against lymphomas until the late 1980s.  If milder approaches are discovered, good.  As I said, the view in 2009 was predominately to eradicate all of the disese, regardless of how harsh the effects.  That mindset has since evolved into quality-of-life and side-effects concerns.   I am interested in where you are receiving treatment.

max

RPI-Chris's picture
RPI-Chris
Posts: 4
Joined: Aug 2019

I'm still considering the options, but my oncologist is only recommending RCHOP at this point. I have and echo scheduled this week to make sure I'm ok for RCHOP, then a final consult on Friday. This probably means that I would start chemo next week. I'm getting treatment through OHSU here in Portland, OR.

lindary's picture
lindary
Posts: 650
Joined: Mar 2015

My story of P. My chemo was on a Tues so that was day 1 of the Prednisone and Sat was the last. First one of chemo I didn't know what to expect at all. got through it just find. Took the Prednisone as ordered. Sun felt fine. Mon I hit a wall and all I could do was sleep. Tues was almost as bad. Wed I was awake more than I slept.  

Second round of chemo. Decided to try taking a good long nap on Sunday. Monday I worked a bit just to exercise the brain. Nap after lunch. Same on Tues. 

The crash is going to happen no matter what. I just felt that by taking the nap on sunday I wasn't quite as tired Mon & Tues as I was the first round. This was my routine for the remaining 4 cycles of R-Chop. 

My mental attitude was that I could not control how my body reacted to the treatment. So I set the schedule for naps, relaxation  and "work" time. (I have a job where I could work from home. )

RPI-Chris's picture
RPI-Chris
Posts: 4
Joined: Aug 2019

Thanks for sharing your experience with how to handle the side effects of prednisone. Did you have CHOP for your treatment? Any lasting side effects?

lindary's picture
lindary
Posts: 650
Joined: Mar 2015

I had R-Chop. Becuase of the mass in my abdomen and pleurisy, both caused by the lymphoma the DR wanted wanted to move fast so my first treatment was CHOP because they did not get the approval on the Rituxan yet. Then there was 5 treatments of R-CHOP ending with the 6th Rituxan May of 2015. Felt good. There was a plan for stem cell so I started 3 cycles of RICE in Aug. Never did have the stem cell. Did do the 2 years of Rituxan maintennace which ended Oct 2018.

Lasting side effects. 

Red & White cell counts were  below low level. Recently my Dr did a blooed test and both were back to pre-cancer levels. But platlets dropped. I wil see my oncologist next month so we will see what is it like them .

Recently I've notice some numbness in some of my toes. But it seems to come and go. Since I see my onc next I will talk to her followed by a conversation with my reg DR.

Then there are the things where I have to wonder Is it a side effect or is it age. 

 

illead's picture
illead
Posts: 837
Joined: Aug 2012

Sorry I did not post sooner, I have been busy and forgot to get back on after I read your earlier posts.  My husband was on B/R for Mantle Cell Lymphoma in '11.  It was fairly new then but not to Germany, it had been used since at least the iron curtain days but was not released in the states until probably the last 10 or 20 yrs.  He did very well on Benda, actually no side effects at all and it does not attack the hair follicles so he did not lose his hair (at least what he had).  His only, what you might say, side effect was about 4 or so days after his infusions he would get very tired but a long nap solved that problem, barely worth mentioning.  There have been a few who I have read had a few problems but basically it is very successful and tolerable.  MCL is a rare difficult lymphoma and incurable and always comes back.  My husband did relapse 2 yrs after going into remission but that is the prognosis of MCL.  He has relapsed several times since then but is back in remission now BTW.  I'm not saying that Benda is the best for your type of lymphoma, I just wanted to let you know our experience with it.

Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Joined: May 2012

Thank you for writing, Becky, since MCL is one of the areas where B&R has been used most, and with great results.  It is also listed at chemocare.com as mostly a Follicular NHL agent.  I suppose that is why it has been used by some against HLs own indolent, NLPHL.

Chris, R-ABVD remains (as I said elsewhere) the mainstay against advanced stage NLPHL, as well as any 'bulky' presentation of NLPHL, but R-ChOP is a strong second place; some cancer centers seem to prefer it.  Your doctor's recommendation, therefore, is quite mainstream for advanced disease (Stages III and IV).  B&R and "radiation plus R" are sometimes employed against early-stage (I and II), minor presentations, but I don't recall anyone getting such for advanced disease.

You may wish to get a second opinion from a hematologist, or otherwise, know that you are being treated according to current Best Practices.  And know that both R-CHOP and R-ABVD virtually always put NLPHL into long-term, if not permanent, complete remission.

max

 

Paula Camille's picture
Paula Camille
Posts: 4
Joined: Aug 2019

Sounds like we are going with six rounds of R-B.  Clinical trI’ll data is minimal but real world results look promising.  Port goes in next week and a couple days later round one of treatment.  We are excited to get started.  Thanks everyone for your comments and feedback.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

Delighted to hear it! Please keep us updated, as there is never anything 'new' here regarding NLPHL...

max

 

illead's picture
illead
Posts: 837
Joined: Aug 2012

Yes, please keep us posted. I thiink things will go well'

Hoping for the best,

Becky

PeprmntPat55's picture
PeprmntPat55
Posts: 59
Joined: Aug 2016

I have NH Follicular lymphoma, diagnosed 8-2016. Did 6 rounds of R & B (with a port installed) and then followed with 8 treatments of Rituxan only for maintenance.  My final treatment was this past January. I was able to obtain a partial remission by my third round of R & B and found that the entire treatment while not without issues, was not as bad as I initially thought it would be.  For myself, I have had ongoing issues with still being tired but honestly I was able to continue working at my full-time job!  Praying for the best results for you, Chris!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

Good overview of B&R regimen.  The best news I noted in scanning this is (1) no hair loss, and (2) no Prednisone.   It lists the most common side-effects as neutropenia (low WBC counts) and anemia (low RBC).   Both are pretty easily treated with Neulasta (for WBC) or similiar drug and iron (for low RBC), via either pill or infusion.

 

https://www.chemoexperts.com/bendamustine-bendeka-rituximab-rituxan-lymphoma.html

 

.

Iluvlucy
Posts: 26
Joined: Feb 2019

Chris, I just finished 6 cycles of RCHOP in the end of June for Stage 3 NLPHL.  I had very little involvement but because I had nodes on both sides of the diaphragm I was classified as Stage 3.  The unique twist to mine was that my second opinion pathology report showed that less than 1%of the cells on the biopsy showed early transformation to diffuse large b cell lymphoma,  which is an aggressive form of non hodgkins lymphoma.   Fortunately both NLPHL and DLBCL can be cured with RCHOP.   I had a relatively easy ride, very little side effects and besides waiting for my hair to grow longer, I have no lasting side effects from the RCHOP.  I strongky recommend a second opinion on your pathology report and treatment options.  I went to my local Cancer Center first, then to 2 different National Cancer Institutes.  Best wishes to you!  

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