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Newly diagnosed with Nodular Lymphocyte Predominant Hodgkin's Lymphoma

Iluvlucy
Posts: 3
Joined: Jan 2019

Hello out there......

I'm so happy to find others who may be going through this at the same time or can give advice on remission/cure/relapse.  

I had 2 large axillary lymph nodes removed December 21st.  No other symptoms, no cancer history.  My biopsy results weren't available until I saw the surgeon on January 2nd.  Surgeon informed that I had Hodgkins lymphoma.  I soon found out on my electronic health record that I actually had NLPHL.  I had CT of chest, abdomen, and pelvis last week.  Saw the results again online but no physician has informed me of the results.  I will see the oncologist for the first time tomorrow.  Although I'm anxious to a point, reading posts on this website has been very helpful.  I have done my online research and as I am an RN I read the research easily but boy are there a lot of opinions on how to treat Stage III which is what I am looking at.  I have not yet had a PET but will see what tomorrow brings.  I'm not looking forward to AVBD, having been an oncology nurse years ago, but hopefully cure will be in my future before next Christmas!  

 

Any good websites to purchase realistic looking wigs?

 

Don't know if I will be able to work through this but would need a decent wig to pull it off.  

 

Any questions that I should ask my onc tomorrow besides the usual?  I will be getting a second opinion and will be sending my records to Dana Farber Cancer Center as one of the researchers I was reading her articles practices there.   

 

Thanks in advance

 

Paula

po18guy
Posts: 955
Joined: Nov 2011

Several things: Do you have a hematologist? I would not consult with a general oncologist, as they are not lymphoma specialists. NLPHL is a unique creature, normally showing CD20, which is a classic B-Cell marker. Thus, there is a good chance that the ground-breaking drug Rituxan would be effective. As you know, ABVD is a very old treatment that is used for classical Hodgkin's - but NLPHL is not classical Hodgkin's. I wouldd think a novel approach, possibly R-CHOP would be more advantageous, even a clinical trial if one is available.

That, and making absolutely certain that the pathology is reviewed by a major lab, such as an NCI comprehensive center lab. Mistakes are made in identifying lymphoma and, on another forum, we lost a member Friday due to misdiagnosis and mistreatment (at a major facolity). The poor 26 year old even underwent an unneeded transplant, and never recovered. In my case, the malignancy was completely missed by the local lab and I would be long gone had I not gone to Fred Hutch/SCCA. 

As to wigs, there will be someone her who can advise on that. Regarding working, if you are an RN, it would not be advisable, what with C-Diff, MRSA and all of the other nasty infections circulating. Your hammered marrow would make you a sitting duck for infection. I recall here that, inspite of media preports, Paul Allen did not succumb to lymphoma. It was sepsis.

But, do look for a well-qualified hematologist and ask about clinical trials. NLPHL is an indolent form, so rushing to treatment is not absolutely necessary.

 

Iluvlucy
Posts: 3
Joined: Jan 2019

Thanks for your reply.  Yes, I have 2  second opinions set up after I see the onc tomorrow. In a rural setting there are no specifically hematologists closer than 2 hours.  I will have a second opinion, including path reading at  a National Cancer Institute a few hours from me and the other on the East Coast.   I did tons of reading on NLPHL over the past 2 weeks and do understand the rare nature of the disease subtype.  I do understand the risk of low blood counts and being immunocompromised. I started my nursing career as an oncology nurse and have administered many different chemo drugs.  Fortunately I have a position that will allow some work from home and other work in an office setting where I would have no patient contact and limited contact with others.  Skype meetings work well.  I have no plans to rush in to treatment until I feel I have done my due diligence.   Thanks again!

po18guy
Posts: 955
Joined: Nov 2011

It is just my advice that this person consult with (and follow the suggestions of) an experience hematologist. Is a leave of absence possible? Family or friends closer with whom you could stay while in treatment? Just throwing out some ideas here, as initially I did not want to make the two hour round trips to Seattle and back. Have made that drive hundreds of times now.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3116
Joined: May 2012

Welcome to you, Paula.

NLPHL was my strain of HL, highly advanced, from the jaw to the pelvic region, and across to both auxillary. Covering the escophagus, heart cavity, superior vena cava, and spleen, as well as in both lungs. In my years here I can recall perhaps five individuals with it. There are five types of HL: four are "classical" HL ("CHL"), and the other is our baby, NLP. At times it has been regarded as an aberrant B-cell NHL, but most today have placed it back in the HL camp. Because about 70% of all newly-diagnosed lymphomas are one of the 50 NHL variants identified, and because even within the realm of HL NLP constitutes only about 5% of new cases, NLP overall is less that 1% of all newly diagnosed lymphomas. Also, NLP is much rarer in females than males. It does not get much research; almost all Journal articls are merely compilation studies of how the existing drugs work. I have never heard of a NLP clinical study in my years of following it. 

In the US, around 90% of hematologist treat NLP with R-ABVD; the other 10% go with R-CHOP. As Po noted, NLP is the ONLY form of HL that expresses the CD-20 cell, which is what Rituxan kills. This is why virtually no HL patients get Rituxan, but it is highly effective in assiting ABVD in eradicationg the disease. Eradication of NLP is relatively easy, in a comparative sense, but ABVD is never "easy." A few doctors treating people with incipient disease (usually Stage 1) have reported starting with just Rituxan, with at least PR acheived. NLP is highly indolent and virtually always responds rapidly to treatment. However, it is much given to relapse, at between 15-20% within 10 years. You can think of NLP as an HL version of Follicular to some extent, which I suppose is why some doctors use R-CHOP against it (Follicular NHL is the most common indolent form of NHL).

Because NLP is readily defeated, travelling the world for a specialist is not necessary. Just be sure that your doctor is a Hematologist, and that he or she plans to employ Rituxan. Also, NLP is often MISdiagnosed, so correct pathology is critical. Your prognosis for complete remission is probably very good. If you retrace what I have posted over the years, much of it is NLP-related. Especially posts to Aaron and Bill-NC will be on the subject, as well as one or two others. As I said, it is a small universe with this disease. Ancedotally, I have not read of anyone here dying of this, although it is what killed former Senator Arlen Spector years ago, after it morphed in to an aggressive NHL, and that is a common thing for NLP in relapse: It often returns as a different lymphoma on the second go-round.

Please keep writing, and know that despite a potentially rough spell with ABVD, wellness should return to you in well under a year,

max

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