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Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Primary CNS Lymphoma help and advice

Posted by

Hi everyone, I’ve joined the Macmillan community today and would be very grateful for any help, advice or similar experiences.

after 2 months of MRIs, seizures and physical deterioration, my father (64) has been diagnosed with a primaryCNS lymphoma. on Monday, we will meet with a haematologist to understand treatment options. 

my father has always been very thorough and diligent in taking decisions. Now, due to the lymphoma or stress he is really struggling to understand medical information and take any decisions. I feel a lot of responsibility to help him but I feel so lost. I don’t know what to ask the doctor or where to look for reliable information on CNS lymphoma. I don’t understand how intensive the treatments will be or how best to plan support for my dad. I can’t seem to figure out any external support available. I try to google for information but it’s either too academic for me to understand or dated or not relevant. The haematologist has mentioned ‘MATRIX’ protocol and a stem cell transplant .

if anybody has any experience or could guide me I would really appreciate it.

Posted by

Hi  and welcome to the online community

I'm very sorry to hear that your father has recently been diagnosed with CNS lymphoma and it's natural that you want to find as much information as possible.

Could I suggest that you join the non-Hodgkin lymphoma group where you can connect with other people who have this type of lymphoma. 

There is also a stem cell transplants group which you might find useful to join so that you can find out what's involved with this treatment.

To join any or all of these groups just click on the links I've created and then choose 'join this group' on the pages that open. You can then introduce yourself and post a question after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.

When you have a minute it would be really useful if could pop something about your father's journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what sort of thing to write you can take a look at mine by clicking on my username.


 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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Posted by

How are things now? My father was diagnosed with this 7 months ago, if you have any questions I would be happy to answer them.

Posted by

Hi I see that this is your first post so welcome.

We have had a number with Primary CNS Lymphoma post in our non-Hodgkin lymphoma group. Do think about joining as folks who have experience further down the line can be a great help to others looking in.

Just follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

All the very best.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Click to see how to add details to your profile

Posted by

Hello there,

I've joined today, purely to reply to this thread and go from there :)
I know this thread is a bit older now but I had to reply as it rang so true to me!

sorry to hear about your father being diagnosed.

I am in the same position now... My father-in-law is 64 too and was diagnosed with primary CNS lymphoma at the end of April.
He has been hospital since end of april and is due to come home next week after round 2 of chemotherapy.

He is also on the MATRIX protocol and stem cell treatment at the end.

Hoping you managed okay and that your father is doing well.

Was just wondering how your father found the intensive treatment?
How did you manage on discharge?
Did he have many deficits afterwards or was he brand new?

Many thanks

Posted by

Hi , I just came across your post.

Sorry to hear about your father-in-law.

Can I highlight our General Non Hodgkin's Lymphoma support group where we have had a number of folks with Primary CNS Lymphoma over the years.

I had a different type of NHL but have been through two Stem Cell Transplants with cells from my brother. It's a long story but you can hit my Community name and see it........ but long story short - I have now been in remission now for 4.1/2 years and doing very well.

We do have a dedicated Stem Cell Transplant (SCT) support group. SCT is a rather unusual and demanding process but talking with others who have walked the walk can help take the mystery and stress out of the SCT Rollercoaster.

Posting in these groups will give you the opportunity to talk with people who know exactly what you are dealing with at the moment. 

Follow the LINKS I've created above, join the group, then hit ‘start a discussion’ and you are ready to go.

You could then copy and paste the information from this first post into your new discussion or you can just join in with existing ‘Discussions’ by clicking on 'reply'.

I am happy to answer questions and help you out as best as I can.

I will keep an eye open for you.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Click to see how to add details to your profile