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Thread: Dad with SCNS Lymphoma

  1. #1
    Newbie New User
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    Nov 2018
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    Dad with SCNS Lymphoma

    Hi everyone,

    Iíve been lurking here for a few months but things have changed and Iím looking for some guidance and maybe some hope. This whole thread is about my wonderful, hilarious dad who is 68.

    In April Ď18 my dad went to the doc thinking he had a hernia from overdoing it during yard work. Completely healthy, active, only medications was for cholesterol. He was quickly diagnosed with Stage IV NHL DLBCL lymphoma in his abdominal cavit (3 tumors that he through was the hernia), bone marrow, and lungs. He underwent 6 rounds of R-CHOP for the body lymphoma. He also underwent 1 intrathecal methotrexate dose and 2 rounds of high dose methotrexate as a prophylactic for spread to his brain.

    He handled everything really well and in October Ď18 he was told he was in full remission.

    He continued struggling with pain and neuropathy that we thought was related to the chemo but after a month he had an MRI followed by a PET Scan that showed activity on the brain. He had a lumbar puncture shortly afterward and it confirmed that there were lymphoma cells in his CSF. All this happened less than 3 weeks after ďfull remissionĒ. His diagnosis is leptomenigeal carcinoma.

    The decline in his condition was incredibly quick. Within a week he lost the use of both arms and we had to help him with all his daily functions. He was admitted to the hospital a few days before thanksgiving and started his first round of MATRIX chemo. Heís starting to recover from that treatment now but was completely out of it for 4 days following the crash of his blood counts. He had periods of incoherence before but this was 3 days of hallucinations/ full-on dementia symptoms.

    Then earlier this week he came completely back to himself and this arms are slowly starting to work again. There was a discussion today with the docs that anything they do is palliative and not curative. I know that in cancer treatment ďcurativeĒ is a relative term and that CNS lymphoma is a pretty awful diagnosis. Especially if youíve relapsed into CNS lymphoma.

    As a family we are starting to debate the benefits of more chemo vs quality of life for what remains for my dads life. All the doctors are dancing around saying this is terminal and itís frustraing not to know what exactly our options are. Iím all for fighting this until the end but I also donít want him to go through fruitless treatment. Should I insist on having a conversation with his oncologist personally? My mom (a nurse practitioner) has been the one interacting with most of the medical staff but sometimes itís hard to separate her opinions from the docs opinions.

    Heís been in the hospital receiving and then recovering from the MATRIX chemo for 18 days now but hopefully discharging soon. I think Iím going to push for a second opinion at Sloan Kettering since itís just down the road.

    I know Iím barginng but Iíll give anything to have my dad around a bit longer. Given that heís not in pain.


    Would love to hear from anyone in a similar situation or whoís gone through the MATRIX regimen.

    Thanks,

    Mer
    Last edited by MetsMer; 12-08-2018 at 05:57 PM. Reason: Clarification

  2. #2
    Hi sorry to meet you this way. I am a firm believer in second opinions. I would certainly recommend that you push for a review at Sloan Kettering. I have not had MATRIX protocol but did have DLBC in CNS and am still here. Best of wishes.
    Female ,age 70, Diagnosed Jan 2010
    Primary CNS DLBCNHL
    Treatment every 6 weeks with High dose MTX and Rituxan for 9 months.
    Tumors shrunk and one was gone in 4 months and the larger one left some brain damage but has not become active as shown on MRI since Aug 2010.
    Since 2012 monthly Rituxan
    High Dose MTX and MRI every 4 months.
    June 6, 2014 NED
    No more chemo 6/2014

  3. #3
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    Thank you Mary N for your response, always good to hear there is hope. I wanted to update a bit on Dad's condition and prognosis in case anyone else is on a similar journey.

    Dad was discharged from the hospital after 21 days and went to a sub-acute rehab center to try and get him some additional independence in his daily activities. After another 21 days there he was able to walk up stairs again, walk some without a walker, and amazingly, feed himself. A huge amount of function came back and he was very happy to be feeling so good.

    During his time at the rehab center he also got a second opinion from Memorial Sloan Kettering at their Westchester office. The lymphoma doc there was impressed by his improvement with the first cycle of MATRIX chemo and recommended continuing that regimen. The doctor at MSKCC also gave us the best news we've had since the new diagnosis. They want to push for a goal of remission, meaning his cerebrospinal fluid is clear of lymphoma cells, and then give him an autologous stem cell transplant. Amazing to hear Dad has treatment options and that they are going to keep pushing for a "cure" from this Secondary CNS lymphoma. Going forward this more or less means Methotrexate at high does and intrathecally with additional drugs in the cocktail as needed.

    He's just finished up his second cycle of MATRIX chemo and only had to be in the hospital for 8 days for the treatment. He did have a bit of a decline in his arm function and got some of the same nerve pain he was having at the beginning of his decline back in November before he went in for treatment this round. It makes us a bit nervous that the lymphoma seemed to be out-pacing the chemotherapy but hopefully this round produces similar results as the last and he recovers that lost function in his arms.

    Thank you for all your stories here and information. It's so helpful to hear other people's journeys.

  4. #4
    Happy to hear that he had a good response from the MATRIX. When I was first diagnosed the doc said I maybe had 6 months to a year. I responded well although the first time on the high dose MTX it almost did me in. They weren't going to use it again but the MRI came back with the tumors shrinking by half in 6 weeks. Sometimes the doc's just don't know. I hope that your dad continues to do well and improves. I'm glad you got the second opinion-- much is tricky with this stuff. One bit of advice that I found on the high dose MTX - stay really well hydrated. If I would forget to drink a lot of water, I felt much worse. It helps the kidneys flush out the dead cells. Hope thing go well.
    Female ,age 70, Diagnosed Jan 2010
    Primary CNS DLBCNHL
    Treatment every 6 weeks with High dose MTX and Rituxan for 9 months.
    Tumors shrunk and one was gone in 4 months and the larger one left some brain damage but has not become active as shown on MRI since Aug 2010.
    Since 2012 monthly Rituxan
    High Dose MTX and MRI every 4 months.
    June 6, 2014 NED
    No more chemo 6/2014

 

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