Hi I know this isn't a new post, but I came across it having searched for primary cns lymphoma which is what my husband has. He starts his first cycle of matrix chemotherapy today (he was told 6 weeks ago by a different dr he had weeks to live and it was a different type of tumour), up to now it's been a long horrific journey and I wanted to know more about others experience. We also have young children - twin boys who are one this week and it is incredibly hard; I often find myself getting upset about his condition having gone from such an intelligent able man to one who is in so much pain and frustrated with the illness, but I'm hopeful he will get some time with the chemotherapy. Wish you well and hope you are rebuilding life for you and your daughter after the incredibly tough journey you have been on

heather

Hi Heather,

I am so sorry to hear about your situation, I often think about those that get this dreadful illness and their loved ones, what difficulties they must be facing, especially in these times! I am more than happy to answer questions you might have. 

As you can imagine I can understand the incredibly tough situation you find yourself in, I hope you have family and other near ones that can support during this time. Of course I cannot know the exact condition of your husband but I would think that with matrix, you should see a rather quick improvement. For my wife, prior to the first round of matrix she was completely bed-bound, unable to communicate or eat by herself but already after the first round we started to see improvements and after the second round she was clearly getting much better and was able to talk, remember things, walk around by herself and so on. However, you may notice rapid changes in his behaviour which should not alarm you as it may be due to the tumour shrinking and changes in the brain. For us, after 4 rounds of matrix which is the standard, my wife was able to get home and at the time scans showed no sign of residual disease in the brain. She then went on to have consolidation treatment with autologous stem cell transplant and scans after that showed again no disease. However, as you might have read in this thread she then relapsed within a year unfortunately and after that everything was difficult. But I would definitely not give up hope, and with the matrix chemotherapy and a consolidation treatment I think your husband should have a fair chance of being free from the disease for some years at least, and be there as your twins grow up. Reading a lot of the cns lymphoma literature and consulting many doctors it seems to that matrix is probbaly the most powerful treatment around.The doctors might tell you though that almost certainly the disease does relapse at some point, but if I were you I would not think about that now. On the contrary you have every reason to be optimistic and think of the best. Of course in the end, what we do or think will not make the difference, and I guess no one can say for sure why for some people the treatment is really effective and long term, while for others, like my wife, the disease relapses quickly. It's just the way it is. But one thing I really learned from this experience is to take one day at a time, it really really helps. So I wouldnt worry now about might happen later. 

What I would say is also to cherish every moment you have with your husband and twins; even though we had such short time when my wife was symptom free, I really think those moments were the most precious in our lives. Every weekend we could go for trips and enjoy ourselves, and to see her be able to walk in a rose garden with her little daughter after all those moments in a hospital bed, that was simply timeless and infinitely dear. 

Actually a few days ago was her first death anniversary; I miss her deeply everyday still. 

Do not hesitate to post more questions or send a message if you need help. 

All the best

Dear Heather,

I am so so sorry to read that, just as you were finally starting the right treatment. It was good that you could be there right beside him until the end, holding his hand. I am sure he could know you were there even if he perhaps couldnt communicate. In your case this is such a sudden shock, I am truly sorry. I had the same feeling when my wife passed away that finally she would be in peace. Please free to send a message anytime you wish to talk. 
I so much hope that one day I can make a difference when it comes to treating this disease.

An old Japanese poem reads:
A road, I knew, that all must one day go
But not so soon as yesterday, today

My sincere condolences to you and your family.