Hi my husband is 42, we have twins nearly a year old and he was told weeks ago he had glioblastoma multiforme and weeks to live, to then now the third opinion following a biopsy and tests etc diagnosis of primary cns lymphoma. He is starting chemotherapy this week, during the misdiagnosis the tumour has increased and his confusion has got worse, I’m not able to visit him because of the current situation and can only do face time. Struggling to find words, things to say not sure how to handle things other than to be there. Any advice/ suggestions?
Hi , I am dropping in past from our General Non Hodgkin's Lymphoma Group.
We have had a few folks post with CNS Lymphoma in the group so why not follow the link I've created, join the group, then hit ‘start a discussion’ and you are ready to go.
Blood cancer is a very unusual beast and on the whole is nothing like solid tumour cancers as you can’t cut it out.
You will most likely find that once the chemo starts you will slowly see improvements as the chemo basically melts away the built up areas of cancer cells.
By the time I went for my first Chemotherapy it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted. I had an initial 15min blast of chemo and that got me through our family Christmas - I even had some dinner.
You can hit my Community name to see my story but what I can say is I have been in remission for 3 1/2 years now from a condition that I was diagnosed with way back in 1999.
Back then I was told “incurable but treatable and I would never be in remission”........ how wrong they were. There is always hope.
I will keep an eye open for you in the NHL Group.
