CSN Login
Members Online: 2

You are here

Coronavirus/COVID-19

What cancer patients, their families, and caregivers need to know about COVID-19.

Treatment for NLPHL in abdomen only

Mary from NJ's picture
Mary from NJ
Posts: 60
Joined: Apr 2016

I am searching for folks who have been or are being currently treated for nodular lymphocyte predominant Hodgkins lymphoma.  Because this exists only in my abdomen (mesentery lining around small intestines), doctors do not recommend radiation therapy (because of the risk of secondary cancers).  One doctor recommends R-CHOP, but 2 other lymphoma teams recommend treatment with only Rituxin for now.  The hope is to shrink the enlarged lymph nodes.  I also have a localized schleroderma called Morphea (an autoimmune disease).  Doctors are concerned that the chemotherapy drugs (CHO) will had an adverse effect on the immune system because of the Morphea. 

Has anyone with NLPHL been treated with only the Rituxin and had success? 

po18guy
Posts: 1048
Joined: Nov 2011

In 2008, we hoped that I had Hodgkin's. Didn't. Just to show the advancements that are being made, my prognosis, when one even applied, was poor. It immediately dropped to extremely poor. This was in 2009. Since then, there was no patient group for me to belong to. It was only a matter of if I survived or not. In 2015, I had two different aggressive T-Cell non-Hodgkin's lymphomas as well as the AML precursor MDS in my marrow at 26%. In 2017, I was given a 99.5% chance of not making it. Greater understanding of NLPHL has lead the way to greeater success. No time to panic - rather time to live and enjoy life. Every day in the US, 102 people die suddenly in traffic accidents. No warning, no recovery. Those of us with cancer are a universe ahead of them.

As to dealing with the diagnosis, what do you believe? Those with a strong philosophy, world view, beleief system or religion report a far easier time dealing with it all. There is an article addressing this in the 2018 bonue issue of CURE magazine. EDIT: Find the CURE Magazine story here.

iamoutside
Posts: 1
Joined: Mar 2019

Hi,

I am located in Toronto, Canada and came across this forum over the weekend while researching about NLPHL treatment options. I am a 26 year old male and was diagnosed last week with early stage NLPHL. I do not smoke, have a glass of wine a few times a year, do triathlons, play soccer and eat pretty well. My extended family (uncle, garndparents etc) have some history with lung cancer and heart disease but not my parents. It's not that easy to find primary sources online with people dealing with NLPHL, that's why I was happy to see this forum thread and want to explain my situation in case it can be of any help to someone in the present/future. I also have a few questions at the end regarding treatment options.

My diagnosis process up to now

  • I noticed a lump in my neck (feels like a golf ball inside my neck) while massaging my neck one day in early November 2018
  • I got it checked out at a hospital and had an ultrasound done
  • Ultrasound located the mass on my left neck and the doctor told me its likely a swollen lymph node
  • I told the doctors I had no colds or sicknesses for months leading up to the day I noticed the lump
  • Was referred to a throat specialist at the hospital who also couldn't figure out why I had a swollen lymph node if I hadn't been sick for a long time
  • Was referred to an oncologist at Toronto General Hospital who said I may have a branchial cleft cyst and was ordered a head/neck CT scan
  • CT scan showed a 4cm oval mass suggestive of either lymphadenopathy or a benign peripheral nerve sheath tumor (schwannoma)
  • Ultrasound guided fine needle aspiration biopsy was ordered to narrow down the diagnosis. 
  • The biopsy involved 2 core (solid) samples and 3 liquid samples.
  • Pathology report on the biopsy was suspicious for Hodgkin lymphoma because malignant cells were found and some cells that were observed resembled Reed Sternberg cells
  • I was referred to a lymphoma doctor at Princess Margaret Hospital in Toronto and my oncologist ordered a thorax, abdomen and pelvis CT scan to check if there are any other swollen lymph nodes in my body. 
  • Oncologist also ordered a surgical biopsy because the 1st biopsy didn't retrieve large enough samples to locate/pinpoint the Reed Sternberg cells as there was still a chance I could have non-hodgkin's 
  • Lymphoma doctor ordered a PET scan
  • Thorax, abdomen and pelvis CT scan revealed no evidence of swollen nodes or tumors located anywhere else except for the one in my neck.
  • PET scan reveled cancerous cell activity in the lump in my neck and some activity in the area around the lump as well as some activity on the other side of my neck (i feel no lumps there)
  • Surgical biopsy done and pathology report diagnosis concluded I have Nodular Lymphocyte Predominant Hodgkin Lymphoma. Numerous small CD3+ T-cells and CD20+ B cells were found
  • Was told last week I have early stage NLPHL and I am closer to a stage 2A because of some activity on the other side of my neck. I have no B symptoms (no night sweats, fevers, excessive weight loss etc.) The only physical symptom I have is the painless lump in my neck and this remained the only symptom from the 1st day I noticed the lump till now.
  • Lymphoma doctor is recommending 2 cycles of ABVD, 1 month break followed by radiation therapy. This proposed treatment plan is being presented to the lymphoma board at Princess Margaret today where all the lymphoma doctors gather to discuss the best treatment plan in a collaborative effort. 

Reading all the threads above especially Max's posts revealed to me (along with some digging on google) that Rituximab is a popular drug of choice to treat NLPHL. I brought this up to my lymphoma doctor and found out that this drug is not covered by my province's (Ontario) health care program. Its cost is covered for certain specific lymphoma diagnosis but not for NLPHL. Regardless, I've asked my lymphoma doctor to bring up the possibility of using Rituximab (I would have to pay) for my treatment when my case/proposed treatment plan is discussed at the lymphoma board meeting.

A few questions:

  • Has anyone had any experiences being treated for early stage NLPHL with ABVD and radiation only with no rituximab? I ask this because R-ABVD seems common in posts above
  • In doing some research online surgical removal is sometimes recommended for early stage NLPHL but was told due to the size of my lump and cancerous cell activity being located around the lump and on the other side of my neck that surgical removal is not recommended. Chemo+ radiation is more effective. Has anyone had NLPHL treated with surgery alone?
  • Can ABVD alone treat NLPHL if scans are done after chemo treatment and show no signs of cancerous activity or is radiation always required after chemo?

I am just worried about all the treatment plans out there because I've been reading so many different combinations online. I trust the doctors at Princes Margaret which is well known for their cancer research and treatment but I know there isn't a golden standard for NLPHL because it is a very unique and rare type of Lymphoma with very little studies done. I just don't want to subject my body to anything I don't need to (Iam sure everyone going through cancer thinks the same things) especially if some of these chemo drugs may cause long term permanent side effects like lung problems from using the Belomycin drug in ABVD. 

Thank you for your time to read my post. Hopefully me explaining the process I went through up to now to get a diagnosis will help anyone in the future dealing with Hodgkin's/NLPHL. Any insight into the questions above would be greatly appreciated Smile

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3411
Joined: May 2012

Welcome to you, iam.

You've scanned the posts above in this tread, but it might be useful for you to do so again.

Yes, ABVD without Rituxan was the standard therapy for NLPHL for many years, prior to the development of Rituxan.  It has a record of being very effective. Adding the rituxan helps statistically.   Prior to ABVD, MOPP was the standard Hodgkin's treatment, and MOPP is still in rare use today.

Rituxan is not used with any form of HL even in the US, exept for NLPHL, because Rituxan kills the CD-20 cell, and NLPHL is the only form of HL that presents with CD-20.  Oncologists so seldom see NLPHL that they may be unaware of the benefit of Rituxan against it.  I would guess that 2 cycles of ABVD with follow-on radiation would be totally effective.  But, if you choose to pay to add Rituxan yourself, it certainly can't hurt.

You mention your diet and health overall.  No one knows what causes lymphoma,  and it is not linked (in any convincing manner) with much of anything, so know that you are not to blame for this.  

max

Iluvlucy
Posts: 26
Joined: Feb 2019

I had 3 opinions for my Stage IIIA NLPHL diagnosed a few months ago.  Although I did have 3 somewhat different opinions they ALL included Rituxan.  I had my first chemo a week ago.  Had R-CHOP ( rituxan, cytoxan, adriamycin, vincristine, and prednisone.  My case was reviewed in 3 different tumor boards as well.  2 local tumor boards and one national as well.  What Im reading is that the latest theory is to avoid over treatment as this is a slow growing lymphoma and you are quite young.  Although I wouldn't consider myself old, I am far older than you and they still wanted to avoid over treatment.  I dont know the answer about radiation, but when initially they thought I had StageIA, they were recommending involved site radiation only, meaning just radiating my armpit where the lymphnodes were located.  I, too, do not have a family history or lifestyle that would put me at high risk.  I am participating in a BIO bank at The University of Chicago Cancer  Center so that they can do ongoing research and gather lifestyle and med history info on me so hopefully they can find out more about this cancer and hiw to prevent it.  Good luck to you and my best wishes.   

Paula

tgyphilly's picture
tgyphilly
Posts: 11
Joined: Jan 2020

I am being treated with Rituxan for relapsed NLPHL.  Currently in maintenance stage with the Rituxan and seemingly having issues for the first time -- after a year of Rituxan infusions with no negative reactions -- with itching and general feelings of malaise and sickness.  PET/CT was ordered off-schedule b/c of my symptoms and it showed moderate increase FDG activity in two nodes (4.6 SUV).  Doc said he is not worried b/c SUV is not high enough to indicate serious metabolic activity in the nodes.  However, the symptoms continue and doc does not necessarily think they are Rituxan related. 

I have had a thousand tests to rule out infections, antibody reactions, viruses, etc. and nothing shows up.  Have been on Predisone twice and now on Gabapentin.  No effect on symptoms. Has anyone had similar reactions to Rituxan?  If this NLPHL board is not right place to ask, can you recommend a better one?  Maybe follicular lymphoma patient board...  Thanks. 

ShadyGuy's picture
ShadyGuy
Posts: 483
Joined: Jan 2017

You are unlikely to ever have a doc tell that something she/he administered to you is causing a problem. I would suggest starting a new thread. This one is four years old.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3411
Joined: May 2012

Tgy,

I am convinced that side-effects, in most cases, simply cannot be authoratatively linked to any cause.  There may be "best guesses', but seldom certitude.  Say a person were to go on just the drug Prednisone, and got agitated and gained fluid weight: that would be a slam dunk -- the Prednisone was the cause.  But very few cases are so clear-cut.    And most people here are on a collection of chemo drugs and others, and many have the SAME side-effects, and some side-effects occure soon, while others are know to delay for years at times  (such as Adriamycine [Rubex] causing heart muscle thickening).   So you might never know.

I have been N.E.D. for ten years now from NLPHL, and was never on maintenance.   Yet, the last two years, I have had terrible....itching !  Go figure.  The N.P. has suggested everything from hot showers to this-or-that as the cause.   She is not worried about relapse, and has ordered no scans.  I get an annual CBC, metabolic profile, and touch exam, and none indicate any problems.

Many lymphomas take JUST Rituxan for maintenance, and it is a "disease-wide issue, so there is no right or wrong thread to be on.  This is fine, or start another -- they are free.  I am thankful you have been in C.R. and that the PET shows no real cause for concern.  It seems your doctor is following due diligence and watching this with an appropriate level of aggressiveness.  He or she, most likely, like us, will never know what caused the itching.   But the "other" main causes of itching in humans are allergies or liver issues.   

Chemocare.com does not list itching as a common or uncommon side-effect of Rituxan, meaning that if it occurs, it is in under 9% of all users.   If you were to go to the Rituxan official webiste, it is probably 30 pages long, and has a massive amount of information, as required by the FDA.

I ask that you continue to share what you know, since it is very significant for many here -- including me !

max

 

https://www.rituxan.com/

 

.

tgyphilly's picture
tgyphilly
Posts: 11
Joined: Jan 2020

Is as good as anyone else's.  I.e., I don't think the doctors have any more of a clue than I do on what's going on.  I unfortunately am not in complete remission, but have "stable disease."  New PET/CT results just came in tonight with SUV uptick of the most active node from 4.6 to 5.6, which compared to some alternatives is fine, but also requires the continuation of the Rituxan, which is increasingly sucking in the side effects it delivers.  I'm just wondering why there isn't more literature on late reactions to it...but maybe like the NLPHL I'm just one of those rare cases. 

Thanks for your feedback

Pages

Subscribe to Comments for "Treatment for NLPHL in abdomen only"