Hi All
Not new to Macmillan as has some wonderful support when going through my own cancer diagnosis-but looking for real experiences of anyone who has helped a relative with Primary CNS lymphoma.
My amazing dad was diagnosed in February after I took him to the hospital thinking he’d had a stroke. Looking back now symptoms were there for a good 8 months prior.
He has been an inpatient in hospital now for nearly 5 months as has had sepsis following every single round of matrix chemotherapy. We’ve been vaguely told that following this his MRI scans show ‘an improvement’ but not been told he’s clear.
we are a very loving and realistic family who have been living with the reality as stated by dads surgeon when he has the brain biopsy of this being a terminal condition. Dad has scarring on the brain which means aside from the rumours he has some permanent cognitive issues. Some days better than others. He was originally a candidate for stem cell transplant but the fact that he has had sepsis 5 times we understand probably rules him out. The only other option we understand although won’t know more until the MDT is whole brain radiotherapy, which we believe scars the brain even more.
does anyone have experience of this?
Finally I guess we want to know the answer to the impossible question which is-if they’ve not fully disappeared (his tumours) how long before they all grow back. Or might they not?
Thanks in advance. All experiences honestly welcomed. We know he is very sick and we know that due to his sepsis treatment is limited so not looking for miracles (although will gratefully receive one)
x
Hi , one of my Community Campion friends highlighted your post for me to drop in past and say high - I don't normaly post in this forum but did see you looking for some info.
I am Mike Thehighlander and I help out in our Lymphoma Forums.
I am sorry to hear about your dad's Primary CNS lymphoma diagnosis and his ongoing issues with the matrix chemo.
On the whole Lymphoma can not be surgically removed as it lives and spreads in the blood so this is where the chemo has to do its work and it often can take time to work and yes, there are no guarantees that it will get all the cancer cells.
Radiotherapy can be used to mop up but again no guarantees.
After being diagnosed with my rare type (incurable) of NHL in 1999 and being on a long treatment journey I actually hear the words Remission and NED (No Evident Disease) in September 2016...... but I know it could well come back.
We have had a number of folks in our general Non-Hodgkin lymphoma Forum with CNS Lymphoma and a good number of folks on Matrix.
Why not follow the link above and come over to the NHL Forum. Hit the ‘Join the Group’ tab just under the main group name. At this point select how you want to receive email notifications when someone answers your posts.
You can either go to the 'Start a Discussion' tab just under the main group name. Set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post. You can also have a look through the various threads by going into the ‘Discussions’ section.
I have also been through two Stem Cell Transplants (SCT) with cells from my brother. I did have other medical issues going into SCT but as my time was running out quickly we gave the dice a roll. SCT is VERY demanding and can indeed be more harmful then using other maintenance treatments.
You can also use the 'Search' facility to look through old posts using Primary CNS lymphoma and Matrix.
I am more than happy to talk with you on this page or in the NHL Forum.
