Hi All,
I am new to posting on a forum but I found it really useful to read some of your posts when I was undergoing R-CVP for NLPHL in 2020.
I was diagnosed with HL in 2000 aged 22. I underwent ABVD (and 2 surgeries for tumour removal) and was in remission for 19 years. I was lucky to go on and have 2 children.
In 2019 I was diagnosed with NLPHL by accident. I didn't have any symptoms apart from extreme tiredness which we all dismiss these days. I had a PET and lit up like a Christmas tree, they considered "watch and wait" which I accepted but as the lungs were involved we proceeded with chemo, R-CVP. I was due to have a scan after 4 cycles to check my response but due to COVID I was scanned after 3. To their (and my) surprise I had such a good response there was no evidence of the disease so R-CVP was stopped. I've been doing my Joe Wicks/Mark Wright work outs and got back to my old self. Earlier this year I found a breast lump which turns out to be nothing, but the radiographer discovered some suspicious nodes. Cut a long story short a PET scan 2 weeks ago revealed that it is back. I'm not sure which glands are involved but it is definitely in the lungs again. I've had another biopsy, presumably to determine if it is NLPHL or transformed but if not enough sample has been collected from the axillary region then I have a lung biopsy booked.
I am not one of these people who feel angry about it, or why me, I believe it is just the way it is (I am in the field of science). I am however human and am fed up as I have all these plans to party as lock down lifts and yet I feel I will return to being stuck at home. I have also just started to like my hair again which I know sounds a bit superficial.
Anyway, I suppose the reason I joined is that if anyone has had a similar experience and wants to ask me anything then please do so. I also have some questions kicking about in my mind - should I do a PICC line as my veins are not liking chemo or blood tests! Can I go on holiday abroad if I have a PICC if it needs flushing weekly? What may be the chemo options if I've had R-CVP already? Is the lung involvement bad news as it can be for some other cancers or is it just the fact it is the nodes in the lungs?
Many thanks.
Hi again and good to see you navigated over to the group.
I see my friend John has picked up on your post and I can only concur with what he has said. Although I had a rare skin NHL that relapsed many times the main tool that got me into remission was Stem cell transplant so one for your list of questions for your consultant.
A big fat yes from me on a PICC line, such a time saver and reduces the stress of getting lines put in every treatment. I had Hickman Lines for both my SCTs and again no real problems.
As John says the Lymphoma Action site will widen your search base, it’s a small Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service.
Lets see what the biopsy says and so am sure that a plan can then be put together.
We are always around to chat.
NLPHL is a type of HL
lymphoma-action.org.uk/.../nodular-lymphocyte-predominant-hodgkin-lymphoma
