Anyone else with Nodular Lymphocyte Predominant Hodgkin's?

msantiguan

Hello,
I was recently
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 :-)

interested

hodgkoid2003 said:

HD - Lymphocyte Predominant vs. other types
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)

Nodular Lymphocyte Predominant Hodgkins Lymphoma
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

allmost60

msantiguan said:

Hello,
I was recently
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 :-)

Don't feel selfish....
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

allmost60 said:

Don't feel selfish....
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

Thanks Sue....
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 :-)!!

anthony.piercy

MNK said:

Post Pet Scan Results
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.

Hi MNK
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

MNK said:

Post Pet Scan Results
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.

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.

forme

msantiguan said:

Hello,
I was recently
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 :-)

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

MNK

gh67 said:

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.

Post Per Scan Results
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.

Reba1952

MNK said:

Hi Peter:
Unfortunately
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.

just got the news
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

Reba1952 said:

just got the news
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.

news
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

Reba1952 said:

just got the news
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.

Now I get it
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

MNK

MNK said:

Post Per Scan Results
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.

3rd Pet Scan
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.

joeyh

I was first diagnosed with
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

joeyh said:

I was first diagnosed with
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??

NLPHL Recurrence
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.