A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 1 of 2 12 LastLast
Results 1 to 10 of 11

Thread: Mother diagnosed with primary CNS lymphoma

  1. #1
    Regular User
    Join Date
    Aug 2017
    Posts
    26

    Mother diagnosed with primary CNS lymphoma

    Hi all
    My mother (48 y) was diagnosed with brain tumor on 5 august, she received some initial treatment at the local hospital to control the swelling in her brain. Pet scan showed the tumor was only in her brain. Then we were given the choice between a stereotactic biopsy and surgery to resect the tumor. The surgeon suspected it was either lymphoma or Glioblastoma and said surgery was more beneficial if it was GBM and not so much if it was lymphoma but then also added that surgery had greater long term benefits so we decided upon surgery. She had the surgery on 26 august and they managed to get 95% of the tumor, we got the diagnosis DLBCL.
    We met a haemato oncologist and he seemed very optimistic about her treatment. She was prescribed 10 rounds of chemo every 15 days based on the Deangelis protocol. Currently she's undergoing the first round of chemotherapy.
    She was very dull and weak already but after the start of chemo it has become even worse; she can't walk properly, talks very little, sleeps a lot. Today she even passed some urine on the bed. Drs blame the increased weakness on the increased dose of dexamethasone (that's what i heard on the phone from my father who's with her).
    I know that dullness and confusion are expected with this disease and it's a rollercoaster, some days better than the others but i would really appreciate any thoughts on her condition whether it's normal or she's worse than most people.
    Also i would be very grateful for any insight on the treatment she's being given.

  2. #2
    Regular User
    Join Date
    May 2016
    Posts
    46
    So sorry about your mom. My husband was also diagnosed with PCNSL and he is now one year post stem cell transplant and doing well. I guess he had the Deangelis protocol since he was treated at Sloan. So I assume your mom will be getting HD methotrexate plus some other chemotherapies. Also rituxan? That is standard at Sloan now. Sloan didn't use steroids and weaned him off. When we first got to Sloan my husband was on anti-seizure meds as well as steroids. His doctor at Sloan stopped both. Those drugs made him feel worse. Also my husband had a biopsy but I always understood PCNSL to be diffuse and therefore surgery doesn't really help. His oncologist explained the lymphoma is all through the brain beyond what they can see. The good news it usually responds quite well to treatment and my husband had complete response to the treatment. He did suffer quite a bit from the lymphoma and now has permanent vision issues, is a little wobbly on his feet and he feels overwhelmed in crowds or new surroundings. He remains weakened from the stem cell transplant but cognitively he is fine and he's alive and working hard to get stronger. It was a tough year but we were always confident in his care. My husband never had the dullness you describe except maybe during the transplant. His main tumor- he had several - was in the occipital lobe which affects vision. Hopefully as the tumor shrinks your mom will perk up again. Prayers and hugs.

  3. #3
    Hello Hopewins. I was diagnosed when I was 70 in Jan 2010 with primary cns nhl. I only was given high dose MTXR and Rituxan I also had dexamophorine and something for convulsions, as that was how I was diagnosed, for 4 years at various intervals. I really had no short term memory and wrote everything down. Things got much better when the tumors were gone and in my case that was about 9 months. I think walking depends on the part of the brain affected. I know I slept often and really at first could only talk to someone for a few minutes without becoming very tired and overwhelmed. At first, it was difficult to walk across the living room. I hope your mom starts to respond soon but don't give up hope. It is a journey for all of you and I am very thankful that my kids and husband were so helpful and supportive.

  4. #4
    Regular User
    Join Date
    Aug 2017
    Posts
    26
    Thank you so much islanders and Mary and extremely sorry for thanking you so obnoxiously late. I got caught up with so many things and completely forgot to thank you for very kind replies. I'm so very embarrassed about that.
    Anyway she did improve a lot as the treatment went on. But the weakness never completely went away because whenever she gets a persistent headache the doctors say it's the swelling in the brain and give her small doses of steroids for it. The swelling i think they said was because of the WBRT. As for the treatment, yes she was given HD methotrexate along with cytarabine and radiation therapy. She was not given rituxan though.
    She completed her last round of chemotherapy in February and now we're waiting for her follow up in April. She's doing fine now, but since the treatment's completion I've noticed a couple of instances where she seemed a little confused. I dont know if it's me overthinking things(because I'm prone to do that), or simply the after effects of the disease and the treatment or something that i should really be worried about. I'm going to wait a little bit and keep an eye out for anything suspicious.
    Wishing you both the best!

  5. #5
    Thanks for the thanks Hopewins. The operation to remove the tumor, the chemo and the radiation all take their toil. We do recover slowly and there is a real thing called chemo brain. I'm sure I have seemed confused and at times I really have trouble with word finding. I still function well but I have to admit that there are changes that i have accepted as my new normal or maybe my new normal at almost 9 years later with the extra years. I wish you all well and am glad that your mom is doing fine. Life is such a precious gift and being a bit confused is not all that horrible but do keep watching as she may need a bit of help.

  6. #6
    Regular User
    Join Date
    Aug 2017
    Posts
    26
    What I'm struggling with right now is differentiating between what is the new normal and what should set alarm bells ringing in my head. Like I've come to accept her headaches as a part of it after talking to her doctors. Then came the confusion which was really very small, other than these couple of instances, cognitively she's completely fine so i convinced myself that i shouldn't expect her to show absolutely no side effects after going through so much. Another instance was that i found a lump behind her shoulder last month, the doctor said it was just steroids causing water retention. As i start calming down and being at ease i notice something and the anxiety starts all over again. A few days ago i noticed some small red dots on her feet and now I'm wondering if it has something to do with lymphoma. Again the approach for now is waiting and watching.
    Guess i won't be resting easy until she has her checkup next month. I really appreciate you sharing your experience Mary because they really help me in understanding the kind of ride we're on. I'm so glad to know that you're doing well.

  7. #7
    Regular User
    Join Date
    May 2016
    Posts
    46
    Iím so glad to hear your mom is doing well. I have spent a lot of time worrying about the same things you talk about. Where I once minimized any of his minor aches and pains, now I worry everything could be a sign of relapse. It doesnít help that the after effects of his treatment are similar to his original symptoms - neuropathy, wobbliness, back pain and vision issues. But we have now settled into better routine. Itís about a year and a half since his transplant and so far so good. Heís back to work and getting involved in new activities. I absolutely feel my husband had Chemo brain. Not to mention depression. Itís all a tough road but we do feel every day is a gift. Despite the fact that pcnsl is do rare the doctors have a pretty good handle on treating it. Best of luck to you and your mom.

  8. #8
    Regular User
    Join Date
    Aug 2017
    Posts
    26
    Hi islanders, it's great to know that your husband is doing well. So true about the original symptoms and after effects of treatment being similar, but we are also learning as we go. We truly have a greater appreciation for life now. When my mom's initial mri showed a brain tumor everyone suspected that it was Glioblastoma but after the biopsy report we learned that it was lymphoma. I heaved a sigh of relief on finding out that it was lymphoma and then found it so funny that I'm actually relaxed at finding out my mom has brain cancer. How situations change our perspectives and reactions. In that moment all i could see was that yes there are treatments available for lymphoma and she will beat this thing whereas when GBM was in the picture i was finding it very hard to be hopeful. What i learned from that experience was that life can take a turn where you'll be thankful for a specific cancer diagnosis (even if it's an aggressive one) and that was a very sobering lesson.
    P.s.: english is my second language so pardon my weird sentences!

  9. #9
    Regular User
    Join Date
    Aug 2017
    Posts
    26
    Ok i need some guidance here. I've seen rituximab being mentioned a lot and that it was given in cns lymphoma cases along with the HD methotrexate. But my mom's doctor never mentioned it. After her last cycle of treatment he said that now she'll only have to take anti seizure meds for at least 2 years. Should we be asking him about rituxan on our next visit? Is it an essential in the cns lymphoma chemo regimen or is it given on a case to case basis? I'm really confused, throughout her treatment i kept comparing the drugs being given to her with the current international standards and though everything else seemed in line the rituxan was a glaring gap.

  10. #10
    Hi Hopewins, I took rituxan for four years every month. My doc felt it might be helpful in keeping the stuff from coming back. I also had high dose MTX much longer than most. I was 70 when diagnosed and doc felt I would not be eligible for a stem cell transplant if it returned. .I'm not sure your mom has to take it but I would at least ask the oncologist about it and his reasons for not giving it.
    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

 

Similar Threads

  1. Primary CNS Lymphoma, Diffuse Large Cell Lymphoma - B-Cell Type. Am I alone?
    By Boats36 in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 89
    Last Post: 07-29-2014, 04:56 PM
  2. Primary CNS Lymphoma of the Brain
    By Sher in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 8
    Last Post: 07-11-2013, 03:45 AM
  3. Husband diagnosed with Primary CNS Lymphoma (brain) - help
    By missymet31 in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 15
    Last Post: 09-29-2009, 07:51 PM
  4. Husband diagnosed with Primary CNS Lymphoma
    By missymet31 in forum Coping and Support
    Replies: 2
    Last Post: 05-04-2007, 01:39 AM
  5. I'm new-Does anyone know anthing about Primary CNS Lymphoma?
    By charles'mom in forum Brain Tumors Forum
    Replies: 2
    Last Post: 05-01-2007, 02:48 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •