NLPHL

Hi  and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike and I help out around our blood cancer groups. 

So sorry to hear about your mum and it must have been a shock when the C word came to your front door........ but I will always encourage folks starting out on a blood cancer journey that this is very treatable with great results.

I have a different rare type of Non Hodgkin's Lymphoma diagnosed way back in 1999 with an incurable but treatable type of skin Non Hodgkin’s Lymphoma Stage 4a and although my blood cancer ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix.

You may well know that NLPHL is in the rare category but this NLPHL information on the Lymphoma Action Site will be helpful.

There have been a few folks post in the group with NLPHL so lets see if they are looking in. You can also put NLPHL into the search tool near the top and look at the old posts and as always you can hip reply and put up a questions and see if they are still using the site.

What have you been told with regards to moving this forward as in treatments etc?

Always around to help out or just to chat ((hugs)) 

I was diagnosed with Nodular Lymphocyte Predominant Hodgkins Lymphoma last year.

I finished my 6th regiment of R-CHOP chemotherapy a few months ago. One of the drugs used in R-CHOP costs $22,000.00 Another costs $23,000.00. This is what the Cleveland Clinic is charging my insurance company anyway.

My last PET Scan was mostly clear, but 4 months later, nodes are growing again. 

My point to you...the drugs in the chemo damaged my heart. My LVEF went from 58% to 40% which is considered heart failure.

You're damned if you do and damned if you dont.

Thank you for the welcome, I won't find out what treatment is on offer till my follow up appointment on the 26th, following the pet scan I had last week.

If you are prescribed radiation treatment, count your blessings. If you need an aggressive chemo like R-CHOP, you may be offered a Bard Power Port. Get it. It is surgically implanted in your chest just under the skin and the tube is inserted in your jugalar vein?. It's where they stick the needles instead of collapsing the veins in your arms and hands. They won't remove mine yet because of the possibility of transformation to Diffuse Large B-cell non-Hodgkins Lymphoma.