Newly diagnosed HL (lymphocyte predominant Hodgkin's lymphoma)

incrediblyblessed

I'm a 40 year old female and I was recently diagnosed with Hodgkin's lymphoma on Friday, 9/11/15.  Yesterday, I found out that it is a rare subtype (lymphocyte predominant Hodgkin's lymphoma). I haven't been able to find a whole lot of info or support online so far. Can anyone out there help?

 

Christine

Jazmin2

Hoping Well

I was in Hosipital on 9/8 for accute appendecitis. They ran a CT scan and saw a swollen Inguinal Lymph node, doctor said I will do a biopsy for it or maybe take it out completely. They also found that My Iron level was waaaaayyyyyyyyyyy to low. So end up getting blood transfusion in the hospital and also set up few appointments to get Iron through IV. I went for my first appointment for Iron yesterday and found out that my excisional biopsy results are in and I have NLPHL. Nodular Lymphocyte Predominant Hodgkin's Lyphoma. Hematologit told me come next day to get bone marrow test. I went to my Physician today discussed it again and she send me different hematologist and oncologist. She told me today that no need for Bone marrow but some blood work and CT scan to check rest of the body. Once they  know the STAGE of your cancer they will start. 

Click on the link below for basic info on NLPHL.

 

http://www.nhs.uk/ipgmedia/national/Lymphoma Association/Assets/Nodularlymphocyte-predominantHodgkinlymphomaLA7pages.pdf

 

Jazmin2

Jazmin2 said:

Hoping Well

I was in Hosipital on 9/8 for accute appendecitis. They ran a CT scan and saw a swollen Inguinal Lymph node, doctor said I will do a biopsy for it or maybe take it out completely. They also found that My Iron level was waaaaayyyyyyyyyyy to low. So end up getting blood transfusion in the hospital and also set up few appointments to get Iron through IV. I went for my first appointment for Iron yesterday and found out that my excisional biopsy results are in and I have NLPHL. Nodular Lymphocyte Predominant Hodgkin's Lyphoma. Hematologit told me come next day to get bone marrow test. I went to my Physician today discussed it again and she send me different hematologist and oncologist. She told me today that no need for Bone marrow but some blood work and CT scan to check rest of the body. Once they  know the STAGE of your cancer they will start. 

Click on the link below for basic info on NLPHL.

 

http://www.nhs.uk/ipgmedia/national/Lymphoma Association/Assets/Nodularlymphocyte-predominantHodgkinlymphomaLA7pages.pdf

 

better survival rate

http://www.ncbi.nlm.nih.gov/pubmed/25863756

Scharfschutze15

Hi Christine,
LPHL is one of

Hi Christine,

LPHL is one of the most treatable/managable and survivable of the many HL variants. This page might give you some useful information on background, diagnosis and treatment and then what to expect:

http://www.lymphomas.org.uk/about-lymphoma/types/hodgkin-lymphoma/nodular-lymphocyte-predominant-hodgkin-lymphoma-nlphl

Also, like many forms of Lymphoma, while it may well come back one day in the future, it's one of the HL variants that continues to respond well to treatment. This is also one of the areas of lymphoma treatment where research is moving fast. There are new treatments (i.e. better targeted to the diseased cells and easier to tolerate) under tests and more progress made each year.

Given the rarity, I'd strongly recommend you get a second opinion from a different oncologist/pathology department to be sure, if you have any doubts.

R-CHOP is the most common form of chemotherapy treatment for your version of lymphoma. It's normally administered once every three weeks so it lasts about 5 months. This is a first-line treatment. In the event that the disease ever comes back, it can and usually is effective again but there are several other alternatives in that scenario and there will be more, better options as time passes.