Many years ago I was diagnosed with Chronic Lymphocyte Leukemia. However when lymph nodes under my arms and in my neck became swollen and my stomach started to grow alarmingly, the doctor put me in hospital but eventually discharge me, saying they did not know what I had. My health has been rocky ever since, no one has been able to diagnose me. My mother had Hodgkins Disease when I was born, so I asked my doctor to get my CD profile dated 11/10/2017 done. When I asked him about it, he said, 'Not to worry, nothing was found'. I then asked him for a copy and when I read it and matched it with the British Haematology guidelines and the American Blood Journal, I could see that while it did match NLPHL it did not match classic Hodgkins Lymphoma. Four Haematologist have refused to see me after a blood test was taken when I approached Laverties, one of the largest Pathologists in Australia, they said no such lymphoma was listed. When, subsequently I was in one of the largest hospitals in Australia, after losing a kidney and they removed a Renal Chromophobe Carcinoma, I mentioned NLPLH and they said I was hallucinating and that there was no such lymphoma, only classic HL and I didn't have that. Since then I have deteriorated and now have a huge swelling on the left of my stomach, the nodules in my throat have grown (shown on scan) and yet I cannot get any help as I cannot find any doctor in Australia who knows anything about NLPLH.
The following is a copy of that CD report:
CELL DIFFERENTIATION MARKERS - LEUKAEMIA/LYMPHOCYTOSIS EVALUATION
POPULATION UNDER STUDY Peripheral Blood: All cells were analysed within the lymphoid scattergram.
Absolute Lymphocyte count 1.8 x10 9 /L (1.0-4.0)
Antigen tested Cell count Absolute count Reference range
% x10 9 /L x10 9 /L
CD 19 (B cell) 4 0.07 (0.04-0.50)
CD 20 (B cell) 4 0.07
CD 22 (B cell) 4 0.07
CD 23 (B cell subset) 2 0.04
CD 10 (CALLA +) < 1 < 0.02
CD 38 (Act. B/T cells) 3 0.05
CD 45 (Leucocyte common) 100 1.80
CD 5/CD19 (B-CLL: NHL: Bsub) < 1 < 0.02
HLA-DR (Class II) 13 0.23 (0.04-0.50)
Kappa light chain 2 0.04
Lambda light chain 2 0.04
CD 3 (Pan T cells) 73 1.31 (0.90-2.10)
CD 4 (T helper) 39 0.70 (0.60-1.70)
CD 5 (T cell/B sub) 70 1.26
CD 8 (T suppressor) 34 0.61 (0.40-1.00)
Th. Ts (CD4/CD/8) Ratio 1.15* (1.20-3.00)
CD3-/CD16+CD56+(NK) 23 0.41* (0.04-0.40)
CD3+/HLA-DR (act. T) 8 0.14
PHENOTYPE: Normal number of B-cells and these appear polyclonal and show no aberrant antigen expression.
Essentially normal T-cell subsets. Increase in the number of Natural Killer cells.
CONCLUSION: No evidence of a clonal B-cell population. Increased number of NK-cell probably represent a reactive process. Reactive causes include viral infections, chronic disease (eg autoimmune) and some malignancies.
Hope you can help me as even my doctors are frustrated.
Regards IreneH from Australia
Hi Irene /
Warm welcome to the Mac Community, or should that be G'Day 
Now I know very little about Lymphoma of any sort (my wife had breast cancer) but found this NLPHL info page on the Lymphoma Support website (link)
There are a couple of members who are very knowledgeable of Lymphoma's so hopefully they will reply with further more experienced information for you.
Hope this is of some help for now, take care, G n' J
Hi and another welcome to the Community.
I help around our Lymphoma Groups and can understand the challenges of finding a way forward and the truth.
As has been highlighted NLPLH is a real subtype of HL. You will also see from the information link that diagnosis needs to be done through CT/PET scan and biopsy as the pathology results are the main key to open the door for a diagnosis....... but this may not be NLPLH as there are over 60 variations of Lymphoma.
Even although I have lived with my rare type of T-Cell NHL for 20 years, blood results like these mean nothing to me apart from a few markers. This is the field for a Consultant Haematologist, they are the people with the knowledge.
As moomy has said, you could put this as a question to our Experts in our ‘Ask an Expert’ section, our mostly Volunteer Experts will get back to you within 2 working days but I would guess that they also will say you need to see a Haematologist.
The fact that you have a swelling in your stomach is sufficient to get your pointy elbows into the doors of your health professionals and ask for answers.
We do have our Hodgkin lymphoma group where you can connect with people who understand HL.
Just follow the link above, hitting ‘Join the Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your own Discussion and introduce yourself to the group.
I did a quick check using the site search tool near the top of the Home Page and got a few hits for Nodular lymphocyte - predominant Hodgkin lymphoma (NLPHL) so have a look.
We are around to help out as best as we can, keep pushing the doors to get answers.
