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Anyone else with Nodular Lymphocyte Predominant Hodgkin's?

Peter G
Posts: 5
Joined: Feb 2009

Hello All.

I'm trying to connect with other people who have Nodular Lymphocyte Predominant Hodgkin's. We have a rare sub-variant of Hodgkin's that has things in common with Hodgkin's (but no Reed Sternberg cells) and characteristics of Non-Hodgkin's that I'm beginning to believe can pose unique challenges to proper treatment. I'm also finding that even the best of doctor's may not be aware of the uniquness of our variant and are content to lump us in with the classical Hodgkin's variants and treat us according to the same protocols. I'd like to compare our cases. We are our own best advocates.

mcgidian
Posts: 1
Joined: Mar 2009

Hi Peter G,

My son was diagnosed with Nodular Lymphocyte Predominate Hodgkin's 6 years ago. They thought that it came back 3 years ago and he went through 4 different sugeries...only to find out he had Progressive Zone Transformation. He now goes to Sloan Kettering in NYC and see's Dr. Tanya Trippett. She is the leading Hodgkin's specialist. My son has been getting very sick these past four months and I am concerned that his immune system is still down from the treatments.

Any questions you may have regarding this particular Hodgkin's I would be happy to answers. God knows I know way too much.

lucille23
Posts: 6
Joined: Nov 2009

Hello,
My son has recently been diagnosed with nlph but may have to get another biopsy to make sure that it's not the dominant version. He recently went to Sloan Kettering for a 2nd opinion & saw Dr Matasar. Tomorrow he will know if he needs to have another biopsy. Any advice would be very helpful. Hope all is well with your son. Thanks

Lynn.D
Posts: 1
Joined: May 2009

Hello,
I also have Nodular lymphocyte-predominant Hodgkin’s lymphoma. I would like very much to speak with either one of you about your experiences with this rare “sub type” and any treatment you have had so far. I am a 31 year old female who was diagnosed in April 2008, after a biopsy to remove a cervical node tumor in my neck about the size of a golf ball (I had this mass for about eight years before I finally found a doctor who was suspicious of it and wanted to do a biopsy) Shortly after my diagnosis I underwent 6 cycles (12 treatments) of ABVD, I think a fairly mild to moderate dosage & then one month later had 15 mild/moderate involved field radiation treatments just to the area and slightly beyond where they removed the tumor. It has been 3 months since I finished my radiation and I am going for my first follow up in a few weeks, although I am hopeful that the treatment was successful… I’m also understandably a bit nervous. I was originally told that this specific type of cancer was very easy to beat and basically not to worry too much, however after my own research I see that although sensitive to treatment it does in fact like Peter said have its own set of challenges & is virtually unknown to most healthcare workers….even some oncologists. If either of you would be so kind as to respond I would be so happy to hear from you and offer any advice or support that I can in return. I live in Toronto, Canada.
Thanks so much,
Lynn

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Lynn D, Peter G, and others,

I can't comment on HD Lymphocyte Predominent other than it is the slowest progressing of HD. I had nodular sclerosing which is the more common and medium progressing. And then there are the aggressive such as mixed cellularity and one more that I can't remember off the top of my head. Then of course, there is the staging.

One characteristic of lymphocyte predominent is the lack of Reed Steinberg cells (or absence of).

I remember back in 1988 when I was diagnosed, one of the first things I was told, "if you were going to get a cancer, HD would be the one that you would want to have". I always hated that, but have come to appreciate what that means to me today.

Because I am an optimist, but then again with limited knowledge of your class of HD, your type of HD probably is even better to treat since it is so slow spreading.

Bottom line, HD has a high cure rate for a cancer that is considered rare. I'll take those odds.

Paul E. (hodgkoid)
Lansdale, PA
HDIIIBNS
rads
MOPP-ABV
cured 19 years without a relapse
dealing with some late effects but life is great for me with two beautiful girls adopted from China (2004, 2006)

interested
Posts: 2
Joined: Jul 2010

I can not find a recommended DR. or hospital or recommended treatment or to wait and watch, which scares me. any information would be appreciated. I am 65 yrs old, show none of the symptoms, blood work good. Discover because of 35 yrs of advanced degeneration of the spine and a recent M.R.I. of the back and neck, which showed something in the neck, which was biopsyed and sent to Mayo clinic,and results are the above mentioned title. Do you have any suggestions for Dr's,Clinics, hospitals,treatments? My e-mail is txtracool107@hotmail.com Any response will be greatly appreciated,thanks Richard

Denise3
Posts: 14
Joined: Aug 2008

Hello Lynn, I am not sure what form of HL I have. I guess I'm not very informed. I've tried to get as much info as I can, but I don't know what to ask the doctors. I was originally diagnosed in 2005. I like you had 12 treatments of ABVD, then radiation stationary to neck where I had a biopsy and chest where I had an 8 1/2 cm. mass. After HL didn't go away they sent me for autologous transplant in April 2008. I went back in Nov. for my 200+ day pet scan which showed some shadowing they called it, under my left armpit. The transplant onco said nothing to worry about. In March of this year they did another pet scan. It's back so they biopsied under my left arm where there are 3 cancer nodes, and another in my left chest next to my sturnum; as well as one on my left lung. They told me I cannot with stand any heavier dose of chemo. Another transplant is out of the question. They told me I was in the 1 percentile with HL that it kind of hides or is non reactive to the chemo. To make a long story longer; I am just wanting to know how you know exactly what form of HL one has. I was stage 2A when first diagnosed and that was all I was told, and didn't know to ask anything different. Not that I would remember to ask anyway. I get into the doctors office and my mind goes blank.
Thanks for your time,
Many prayers for you,
Denise

ctcreed
Posts: 3
Joined: Oct 2009

Hello all,
I actually just joined because I was looking for more information on the type of Hodgkin's I had, which was Nodular lymphocyte predominant Hodgkin's. I was diagnosed at the age of 2 in January of 1989. I only had one enlarged lymph node on the back of my head (occipital) and then my doctor decided to treat me by not treating me. I am what she considers patient one, in a study of juveniles with this rare form of Hodgkin's.

My questions are a little different. Has anyone else just had an excision and no other form of treatment? The one lymph node that I had excised was the only one I ever had signs of disease in. I know there have been others, but I guess this form is so rare that I've never had the chance to speak to anyone who's had it.

And then my other question involves other diseases. I've had terrible asthma since I was young, and at 16 I was diagnosed with Juvenile Rheumatoid Arthritis. I'm involved enough to know that everything is connected. Basically I have a terrible Immune System. Has anyone else had this kind of connection with other immune diseases?

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

I know of another person who suffers from the Rheumatoid Arthritis. And I myself have immune issues courtesy of my diagnostics and treatments (back in 1988/89).

Because your days were back in the the eighties, you don't mention if you see anyone who deals with what is called late effects. This is a specialist who has studied the effects of cancer treatments in those of us fortunate to have survived all these years.

I would like to make a suggestion to you. I am involved on another support list of long term survivors and I'm sure you could get a lot of direction for what you might be looking for. Go to www.acor.org, then "mailing lists", then the letter "L", then LT-Survivors. You sound like you are in a situation similar to mine and I know that this list has been very helpful to me (though my side effects are different - the support and direction is so valuable).

Paul E. (Hodgkoid2003)

MNK
Posts: 12
Joined: Jan 2010

Hi Peter:

Unfortunately since our NLPHL (me 3a) accounts for less than 400 cases a year the medical field has little information to create standard protocols. After using my cross-examination skills on multiple oncologists I've discovered that general train of thought is that they are unsure as to the exact protocol so they error on the side of caution (based on statisical probabilities) and treat us on a scale similar to Classical Hodgkins. Generally, the lower the staging without "B" symptoms the less extensive treatment. Also since we generally have the CD20 antigen were prescribed Rituxan which is considered very effective in our fight against NLPHL. In my case I was prescribed 6 cycles of ABVD and 6 Rituxan treatments, after 3-1/2 ABVD cycles and 3 Rituxan treatments my pet scan came back clean and my Oncologist said I was in remission. I however, after grilling my ONCO agreed to finish my remaining treatments and now have 3 left to complete.

kf4057
Posts: 1
Joined: Jan 2010

Hello,

I recently diagnosided with NLPHL. I am in 1A stage. I had a swollen lymph node in my left armpit, where I removed it and had a biopsy. I am 38 years old healthy male, and I am leaving in Athens Greece. I already have seen 4 different hematologists regarding my case. One of them told me to do only local radiation therapy, and the other three told me to do few cycles of ABVD chemo (3 cycles) and then local radiation therapy.
I can understand that my NLPHL is very rare, so there is not a standard protocol for it. I have searched a lot through the web, and I have understood that NLPHL needs maybe less intensive treatment compared with Classic HL???
Any suggestions in order to have an opinion from an expert or from a similar patient are very welcome.

Many thanks.

gh67
Posts: 3
Joined: Feb 2010

Hi,
My husband was just diagnosed with NLPHL (stage 3A) and the first oncologist we saw suggested combination of radiation + Rituxan, no chemo. The rationale was to look for a long term treatment plan with minimal side effects. We are on the fence about getting a second opinion. Interested to see what treatment plan you chose?
Thanks.

MNK
Posts: 12
Joined: Jan 2010

gh67: I too was diagnosed with stage 3A, as you are aware stage 3A means that your husband has enlarged lymph nodes on both side of his diaphragm and that would mean radiation on multiple areas of his body. Please research the long term side effects of radiation, this site has excellent resources.

gh67
Posts: 3
Joined: Feb 2010

Thanks for the info! How did you ultimately decide on the best course of treatment for your case?
We got several opinions (2 from top 10 cancer centers), and they differ from 'do nothing' to radiation alone to radiation+rituxan to abvd+-radiation+-rituxan. We are yet to find two experts that agree. Been doing a lot or research regarding different options, but still on the fence about which way to go.

MNK
Posts: 12
Joined: Jan 2010

Like everyone else with this oddball cancer, I was given multiple options from wait and see to ABVD + Rituxan combo and everything in between. I chose the ABVD + Rituxan combo for the following reasons: 1) none of my lymph nodes were greater than 2.7cm in diameter; 2) Only the lymph nodes on my neck were visible by the naked eye; 3) Since I was stage 3a, multiple lymph nodes were involved and the enlarged lymph nodes in my groin area were in an area where radiation could not reach; 4) like it or not Radiation is a bad and the associated long term side effects of radiation are not worth the risks (my opinion). Fortunately, for me after my first ABVD and Rituxan infusions the enlarged lymph node on my neck was no longer visible. After 3-1/2 cycles of ABVD and 3 Rituxan infusions my Radio Active Sugar Water PET SCAN can back clean and showed that the enlarged nodes had disappeared and no "metabolic activity" could be detected. Hopefully this gives you something to think about.

MNK
Posts: 12
Joined: Jan 2010

Completed 6 cycles of ABVD and 6 Rituxan infusions March 8, 2010. On Monday June 14, 2010 I had my first post-chemo pet scan. The result were "No PET CT evidence for a significant hypermetabolic focus or significant lymphadenopathy." Additionally, all my blood work has returned to normal levels. My treatments have worked so far.

anthony.piercy
Posts: 1
Joined: Jul 2010

Hi MNK,

My name is Anthony Piercy and I work in the American Cancer Society office in Northeast Tennessee. I am trying to help a patient get some information about his diagnoses of Nodular Lymphocyte Predominant Hodgkins and I was wondering if you would be willing to speak with them over the phone. This is the first case of this type of cancer in our area and they are having trouble finding someone to treat it in our rural area. If this is something you would feel comfortable doing please e-mail me at anthony.piercy@cancer.org or call me at 423.282.7010.

Thank you for your help and I look forward to hearing from you.

All the best,
Anthony Piercy

gh67
Posts: 3
Joined: Feb 2010

MNK, glad to hear that your treatment plan has worked. How have you been feeling after the treatments? How often will you undergo PET scans?
Since my husband's diagnosis in February (stage3A), we have been following the wait & see approach and still trying to decide on the best course of treatment. Your diagnosis sounds similar to his and I'm encouraged by the outcome of your treatment thus far.

MNK
Posts: 12
Joined: Jan 2010

gh67:

I feel great. My limited amount hair grew back, and all my friends say it's thicker now than it was before chemo. I'm back in the gym 3 days a week. My veins that were scarred by the chemo have become supple again, muscle pain gone, acid reflux gone, fatigue gone, sleep patterns are normal again. (My Onc is somewhat amazed on how fast I have rebounded from what he put me through.) Life is good. As for my pet scan schedule my onc wants me to be scanned every six months for the 1st two years after I completed the chemo and then once a year for the rest of my life. My next scan will be in December 2010. Good Luck.

MNK
Posts: 12
Joined: Jan 2010

Got my results today from 3rd pet scan of the year. Again no metabolic activity or signs of any lymphoma. The ABVD and rituxan really worked well for me.

pd681
Posts: 1
Joined: Mar 2010

Hi I was diagnosed NLPHL at age 47 That was in March 2005. I was treatad with 4 weeks of radiation on my neck right side. This spring I had another lymphnode appear on the left side of the neck, just outside the radiation field of the last treatment. the oncologists believe the best course of treatment this time is two cycles of ABVD then local radiation therapy.The oncologist have been honest with me regarding how little they know about our disease.I do agree with this treatment plan.And I have to wonder if it would of returned if i had chemo the first time.

Good Luck
and best wishes

Patrick

Reba1952
Posts: 1
Joined: Nov 2010

Hi:

I have NLPHL Stage 3. My oncologist is planning on chemo using a port. She is on the fence about Rituxan. What is your opinion? I am going to a research institution, but as you say, this is rare. I am 58 and a female.

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hi Reba,

I am just seeing your post on this thread. Very sorry to hear about your diagnosis. But I hope that you can spend some time here and read what some of these great folks have to say about their experiences.

I just turned 60 a few weeks ago and found a lump in my neck in July. I was diagnosed with Diffuse, Large B-Cell Non-Hodgkin Lymphoma (DLBCL). I actually don't know what your diagnosis means, so I don't know if it will be similar to my experience. What is NLPHL?

I started on R-CHOP in Aug. with a port and only have two more infusions to go. I love the port. It makes those infusions very easy as compared to an IV. When I go down to MD Anderson in Houston, they can't use the port for most of the testing procedures. Man, the last time I thought they were tearing the skin off my arm when they did the IV. Believe me, the port is better.

The Rituxan is tedious and can cause some immediate side effects, but your onc will know all about that and will know how to properly administer it. Both of my oncs (here at home and in Houston) were absolute about the benefits of Rituxan for me. But again, I'm not sure what your diagnosis is.

Anyway, I'm glad that you found this site. Please try to go to the opening Lymphoma page and begin a new thread. Your post has gotten buried in an old thread line and many of us may not even see it. In fact, I will start a new subject with your ID as the subject to make it easier to find.

You have all good wishes,
Tom (DLBCL-4-7/10)

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hello again, Reba,

Well, after I posted my first comment I went back to read this tread. Now I get why you posted here.
And, also, I know that our diagnoses are very different, so I can't be much help. Please keep trying because there are probably other folks who can help more.

Again, best of luck,
Tom

DT44
Posts: 6
Joined: Mar 2010

Peter, My 24-year old son was diagnosed with NLPHD in September 2009, stage 2A. He is being treated at Sloane Kettering (Dr. Mattasar)and we went to Dr. Decter (Cornell) for a second opinion. Both recommended watchful waiting with 3 month visits and 6 month CTs. My son is coming up on his 2nd CT. This approach is stressful, but since this is a very slow progressing disease, we are waiting. I have scheduled a visit with Dr. Peter Mauch, at Brigham & Women's Hospital in Boston because he has written articles and chapters in medical books on NLP. I attended a Lymphoma conference in the Fall and there seems to be much on the horizon to address the disease at the DNA level, but it is all very experimental and not specific to NLP. They are also researching vaccines. You are right that there is not much known about NLP because it is rare and it has been treated as Hodgkin's, which it really isn't. I agree with you that we should try to get as many people with NLP sharing their information. Please stay in touch and let me know how you are being treated. I wish you good luck and good health.

jw1623
Posts: 2
Joined: Jun 2010

My 14-year old son was just diagnosed with NLPHD (May 2010). We are waiting on results of the PET-CT scans, and we hope for confirmation of stage 1A. We currently live in Germany, and the doctor has recommended watchful waiting with a defined follow-up process according to a new European study. I have not yet seen the details of this. I have just started researching NLPHD and have found some very useful information on "UpToDate". However, on this site they state that watchful waiting is still considered to be experimental. Therefore, for me I found it useful that you received the same advise at Sloan Kettering and at Cornell. I would be very interested to hear something about your visit with Dr. Peter Mauch. I have found a clinical trial at the National Cancer Institute for young patients (up to 21 years old) with NLPHD that started in 2006 (NCT00107198), that includes a watch and wait approach, but I could not find any results for this yet. Perhaps there are already some preliminary results published, since the estimated completion date was February 2010. There seem to be fewer studies available including watchful waiting for adults, but there is more information available for such studies with children or adolsescents. This information may be of interest to you since your son was diagnosed at age 24. I myself was diagnosed at age 23 with stage 1 non-Hodgkin lymphoma, and I have been disease free (after chemotherapy) now for over 20 years. I am very interested to share and discuss information regarding NLPHD with those whom are interested.

DT44
Posts: 6
Joined: Mar 2010

JW1623, I'm deeply sorry that your son is facing this disease and grateful that you beat NHL. My visit with Dr. Mauch was very informative. His data, collected over 30 years, reflects that radiation therapy is very effective for Stage 1A and less so for Stage 2A. He referred me to Dr. Yahalom at Sloane, who was also quite optimistic. Sloane conducted a case study of my son and recommended against radiation because his cancer is under both armpits. They sent me a study from France that compared NLP patients who received treatment and who waited and the overall survival rate at 15 years is 89%. The article is "A Long-Term Study and Analysis of Transformation to Diffuse Large B-Cell Lymphoma in a Cohort of 164 Patients From the Adult Lymphoma Study Group" and te authors are Irene Biasoli, MD1; Aspasia Stamatoullas, MD2; Ve´ronique Meignin, MD3; Alain Delmer, MD4; Oumedaly Reman, MD5;Franck Morschhauser, MD6; Bertrand Coiffier, MD7; Andre´ Bosly, MD8; Marine Divine´, MD9; and Pauline Brice, MD10. I think there is a clear concensus to do radiation for Stage 1A because it eliminates the NLP and it has a 98% nonrecurrence at 10 years. Sadly, NLP has not been properly diagnosed and treated and there is not much information about survival from watchful waiting beyond 15 and 20 years, except anecdotally as on this website. Also, the studies do not really break down the data. I would really like to know how young men my son's and your son's age do over time. Thanks for sharing the information. Please stay in touch.

jw1623
Posts: 2
Joined: Jun 2010

DT44, Thank you for your message and kind words. I also appreciate the information from your visit with Dr. Mauch. My son is still in staging, so we have not discussed details yet regarding treatment options. The doctors have concerns about a second lymph node with uptake on the PET-CT scan, so I am quite fearful that my son may have stage 3A disease. My son already had the lymph node in the neck removed, and now he may need a second surgery. I thought my personal battle with NHL was hard, but fighting this battle with my son is infinitely more painful.

msantiguan
Posts: 2
Joined: Jul 2010

Hello,

I was recently diagnosed with NLPH about three weeks ago. I am a 33 year old female. I had zero symptoms, and probably would not have went to the doctor if I did not feel a lump in my shoulder while in the shower. After I felt the lump, about three days later I felt small lumps on the side of my neck and they were painful. My primary care was concerned, sent me for biopsy and here I am. They are still waiting for a second opinion from stanford, but are pretty sure it is NLPH. My docs are confused as they say this usually happens in men, hardly ever seen it in women. I am waiting to have my port put in, but after a meeting on friday with doc he says I will need 2 cycles of chemo, 4 weeks of radiation 5 days a week (I am stage 1a, they say pet/ct/marrow clean). I have no idea what will happen next, all I know is I am nervous and praying for the best. Docs are confident I should have a good outcome....but of course their is still the worry factor. I have a 2 and 4 year old and wonder how chemo will make me feel and if taking care of my kids will be compromised....how will I explain hair loss? So much going through my mind, and sometimes it feels like I am selfish for feeling this way...I don't really know what to feel, but it is nice to have an outlet :-)

allmost60's picture
allmost60
Posts: 3147
Joined: Jul 2010

Please don't feel selfish for feeling the way you do. On June 16th, when my doctor told me and my husband my cancer was malignant, the range of emotions I experienced were too many to list! First I was shocked, then scared, then angry, back to scared and everyday at sometime I would say.."God, why me?"!!!! I felt so bad after saying that because "why NOT me"? Would I want someone else to be the one with this...oh heck NO! The first week after the news I would get all hurt and bent out of shape when my husband laughed while watching something on t.v...like what?...he should sit around and be sad or down all of the time? Of course not... but these are emotions we feel and just have to learn to work through when given such devastating news as having cancer. I hope you have family or friends to call on when you start your chemo. I'm sure everyone will be more than happy to help you out with caring for your children. I hope you will keep us up-dated on how things go for you. God bless you...Sue

msantiguan
Posts: 2
Joined: Jul 2010

Thanks for your kind words, Sue. I have a wonderful support system in my mom and my sister, and my husband has been great. I guess the wonder of what they next couple months will bring has me thinking....sometimes too much. I will keep you all updated, and thanks a million :-)!!

forme's picture
forme
Posts: 1157
Joined: Aug 2010

Hi msantiguan,
How are you doing since your dx.Did you get your secong opinion yet. I was interested in knowing about your scans. You said that all your scans were negative. Does that mean nothing showed up on your pet/ct and bmb. I am waiting for results from my pet/ct and had been told that sometimes nothing shows up, but you still can have lymphoma. Is that how it was for you.
please keep us all posted we are here for you.
Lisha

joeyh
Posts: 2
Joined: Feb 2011

I was first diagnosed with NLPH in January of 2007 at the same time my son was born. Had two cycles of ABVD and radiation to my neck, where the one swollen lymph node was located. No signs of cancer after these treatments. In June of 2010, found another swollen node on the same side of my neck just under where the first one was, this time when my daughter was born! Excisional biopsy determined that it was NLPH again. Doctor recommended six rounds of ABVD and four rituxan treatments. After two rounds of ABVD and the rituxan I was having a lot of pain and nausea and was a nervous wreck. It seemed as if my chemo treatments picked up right where I left off in 2007. I have no doubt that a lot of my suffering was psychological, but it was real to me. After conferring with my Dr a PET scan was done and showed the cancer was gone. He said if I wanted to stop chemo I could since it looked like all cancer was gone. He placed a lot of emphasis on the rituxan and said he believes in the future rituxan alone may be the preferred treatment for NLPH.

I would like to speak with anyone else who has had a recurrence of this disease. He said if it comes back again I'm looking at high dose chemo and stem cell treatments. Anybody with NLPH have experience witht this??

sknelso
Posts: 1
Joined: Nov 2011

I was first diagnosed with NLPH in April of 2007. My cancer was located under my right arm. I had R-CHOP and localized radiation treatment, with no signs of cancer following treatment. A recent CT scan (Nov. 2011) showed a swollen lymph node located under my left arm and I am concerned this could be a relapse of the NLPH. I am interested in sharing experiences of those who have had a recurrence of NLPH and their treatment decisions.

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