CNS Lymphoma

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Hi everyone, I have been reading all the posts on here for weeks and it has given me comfort and also a little guilt as up to 8 weeks ago I was happily living my life without any thought to what others with brain cancer are going through.

My 49 year old partner of 23 years went to A&E early October after a few short confusion spells , the CT scan showed a tumour in his left temporal lobe, I will be haunted forever from his call to tell me. Fast forward 8 weeks and what feels like millions of scans and tests and he has been diagnosed with primary CNS lymphoma. 

I just wondered if anyone had any experience of this type of cancer and what to expect for the treatment plan as we haven’t been consulted about that yet. 

my partner is taking steroids so symptoms have gone for now but he is a little down as unable to work and he loved his job and boredom and insomnia are a big problems. We have a 20 year old son who seems to be handling the news well but worried about him too. 

I feel like I am living someone else life and the worry and stress is unbearable at times but trying to remain strong for him. 

thanks for reading, hope I haven’t rambled on for too long, would be great to hear from anyone that has been through this so we know what to expect. 

  • Hi  and warm welcome to the Macmillan Online Community although sorry to hear about your partner and to hear about his CNS Lymphoma diagnosis.

    I am Mike and I help out around our Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.

    Lymphoma is an unusual tyoe of cancer and is rather different from sold tumour cancers.

    There are actually 60 types and sub-types of Lymphoma and CNS Lymphoma is one of these 60……

    CNS Lymphoma is actually rather different from Brain Cancer because of how it develops and is treated. I had a rare 7 in a million type of skin Lymphoma…… but it was not skin cancer…… it was lymphoma….. yes very confusing. 

    Over my years supporting people with Lymphoma on this community I have talked with many people (family/patients) who were on the same journey you and your partner is on..,,,,, but also many people on the various Lymphoma Action Support Platforms.

    On the whole these people were successfully treated and went on to live normal lives.

    Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

    We have had a number of folks with CNS Lymphoma come though our dedicated Non Hodgkin's Lymphoma support group so it would be worth joining and putting up the same post in that group…….. where we can continue a conversation around all thing Lymphoma and the treatment journey ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike, thank you so much for the warm welcome and all the information links, I was able to find lots of answers on the Lymphoma Action site. 
    We have just been released from the neuro oncology team and now waiting for a consultation with the Haematology consultant to understand the treatment that will be given which I think is something called Matrix. As soon as we know more I will post on the NH Lymphoma group in the hope to chat to others with same type of Lymphoma. I had already joined the group. 
    thanks again for your reply and all you do to help people on this site. 

  • Hi again  MATRIX is one of many chemotherapy treatments used for Lymphomas but this one is specifically designed for CNS NHL….

    As you will have come to understand when it comes to CNS Lymphoma surgery is not the tool that will make the difference to turn the tide.

    Once you are ready to introduce yourself to the NHL group as there have been a number come through the group with CNS or are supporting family on their journey.

    As you get ready for the Heamatology appointment you may find this link Questions to ask your medical team about Lymphoma helpful as you get your top questions down in a note book ready for that appointment.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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