Ask about stem cell & bone marrow transplants

Jane is a haematology nurse with extensive experience in stem cell and bone marrow transplants. She also has experience in managing late side effects of transplants. She'll aim to respond within 2 working days.

DIAGNOSIS OF NLPHL

ReneH
Posted by

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.

Hope you can help me as even my doctors are frustrated.   

Regards Norma from Australia

Jane N - Macmillan
Posted by

Dear Norma,

I am sorry you are going thorough such a rough time, but I hope you can appreciate that it is very difficult for me to comment when I don't know the Healthcare system in Australia.

However, the one thing I can be certain of is that Lymphoma is not diagnosed from a blood test, you need a lymph node biopsy to do that.

I have done a quick search of the internet and straight away found Lymphoma Australia,they discuss NLPHL on their website and they seem to have a similar setup to Macmillan in that they have Lymphoma nurses you can contact to help and advise.  I have linked their contact page which has a telephone number and email address and I hope by contacting them they can guide you to a specialist that can help.

Best wishes for the future

Jane

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.