Hello all, my son's due to start his 3rd round of R/CHOP on Friday, but he has a very rare immune system and he now has swelling all round his neck and face so extremely bad that he can't eat. After his first round there was improvement , but we seem to think it was after the filgrastim that his face started to swell up again, even worse after his second round again after the injection. Has anybody had anything similar to this reaction? At the minute the heamatology and immunology seem to be at a loss as to what is happening.
Hi and welcome to this corner of the Community but sorry to hear that your son is on this journey.
I am Mike Thehighlander and help out around our Lymphoma groups. I had a rare skin NHL but have experienced rather a lot of different treatments over my 22 years.
I was on G-CSF injections every day for 4 months after my second Allo (donor) Stem Cell Transplant and apart from some slight head and bone pain I was ok..... but have heard about others having various challenges.
Has his team tried some of the other types of injections?..... have they played around with the amount of injections or the strength?
Its not great when these reactions happen and finding a solution is not coming.
((hugs))
Let’s look for some answers to be found.
Isee you have found and joined our dedicated Stem cell transplant group.
Do use this area once your son is on the SCT rollercoaster as the journey is full of twists and turns but there are folks who know the journey well and can help you out.
((hugs))
I was diagnosed back to n 1999 with a rare skin NHL so I could not be put into any form of remission for an Auto so my brother came back as a 10/10 match but we have had a few folks over the years with a 5/10 match.
You can see my story by hitting my community name Thehighlander and also look at this thread SCT Success Stories
It may well be worth putting up a post in the SCT Group to introduce yourself.
Always around to help but
This is unfortunately can be one of the big challenges in SCT Dawn.
I am amazed the differences between Health Boards mind you Heath is devolved in Scotland.
We live in Inverness and my SCT Unit is in Glasgow at best a 8hr round trip but during the winter going through the Cairngorms it often was a 10hr round trip.... in the snow 
We must have done the drive 30 times over my two SCTs.
Because of the distances our Heath Board has a fund that when someone was sent out of the Health Board region for treatment they covered fuel or rail costs and B&B if required.
The SCT Unit I was in actually had a few single rooms on the ward so my wife could stay most of the time but the SCT unit has been moved to a new hospital so that great facility has now gone. So it would have been a challenge but we have a few friends in the area who would have helped her out.
Do talk with your Consultant, Specialists Nurse or even call the Maggie’s Centre at the Freeman Hospital as there have been a few folks post about this very challenge over the past few years in your area.
Do also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week. This service can give lots of cancer information, support, financial guidance or just a listening ear. We also have our Ask an Expert section where you can look for some guidance from the financial guidance team but do allow two working days for replies from our expert team.
I was actually sent down to the Freeman to see a Lymphoma Skin Specialist who was great and helped set up my treatment plan that I had in Glasgow.
