Needing some experienced encouragement

Liz888
Liz888 Member Posts: 14
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Dear All,

Although it's my dad who has cancer, I am writing this mostly for myself. I really need some encouragement and some more experienced voices to talk me through this

As many of you know, my dad was diagnosed with low grade Splenal Marginal Zone Lymphoma in November, 2014, at the age of 67. He was treated and sent home, everyone telling him that everything should be fine.

Almost immediately after his splenectomy, though, the complications started. Unable to see the signs, his doctors underreacted as his health got worse and worse. Finally, after a week in the ICU with sepsis, he was diagnosed with DLBCL in March this year. His previous cancer had transformed into this agressive form.

Almost immediately after receiving R-CHOP, his condition improved. It continued to improve through nearly all 6 infusions.  His scans in September looked as if he was in remission. We were all thrilled, hoping that this awful journey was over.

Then, three weeks after his final infusion, his first post-chemo pet scan revealed that his cancer was returning.  He just had his biopsy this last Thursday. His doctors have yet to tell us what the diagnosis is. But we are stunned, shell-shocked, and heart broken.

The plan from here is high-dose chemo followed by an ASCT. I have been reading the numbers and, it seems, the fact that my Dad was not able to maintain full remission following RCHOP does not speak well for his prognosis following ASCT. This is especially true, apparently, since his low-grade SMZL is almost certain to relapse.

It's unrelated, but I lost my fiance' suddenly to a heart attack this last August. He was only 37 years old.  Christmas is pretty crippling this year as I face life without Chetan. But, I think the fact that I lost him informs the massive fears I have about my dad's situation. In my head, I wonder whether he will be in palliative care by next Christmas, since I can't imagine that his stem cell transplant will keep him in remission. He's had such rotten luck with this disease up to now. It's terrifying, but these are the messages that run through my head.

I've been looking all over for what sort of salvage therapy can be offered if ASCT fails. In younger patients, I know they can do an allo transplant but that depends a lot on factors we can't possibly anticipate.

In the meantime, I need to be able to sleep and to not despair over the fact that I will likely be saying good bye to my dad in the next several months just like I had to suddenly bury my fiance'.

Please, if anyone has experience with this, I need some common sense encouragement here. It's scary, and all I can see is a bleak outlook.

Comments

  • NANCYL1
    NANCYL1 Member Posts: 289
    #2
    liz

    Hello Liz:

     

    I read your sad story.  I am not much help re the kind of Cancer your father is suffering from.  B ut thought I would write a short note anyway.  I have had Lymphoma, B Cell, since about Jan. 2012.  Had Rituxin infusions for 2 years.  Seems to be in remission at the moment.  I go for a blood test and oncologist visit in January.

     

    I just wanted to say that I hope you have the best oncologists you can find.  Would another opinion be appropriate for your father, do you think?

     

    Life can be so terribly difficult.

     

    Nancy

  • lindary
    lindary Member Posts: 711 Member
    #3
    ASCT

    Last Dec I was told I had follicular non-hodgkins lymphoma. I was 64 at the time, now 65. Did 6 cycles of R-chop which reduced the cancer but did notput it into remission. So the next step was 3 cycles of RICE in preparation for SCT. The RICE was completed in Oct (put me into remission) with the SCT to start in Nov. Went through all of the tests and just before I was to start the prep work to build up my t-cells they stopped.

    The final results on the bone marrow biopsy came back and had some abnormal cells in there. It was deteremined they were MDS (Myelodysplastic Syndrome). They are damaged immature blood cells that can develope into an agressive form of leukemia.  So all plans were cancelled. Oncologist said that we need to go with t-cells from a donor. They are going to set up a new schedule after the first of the year. To me the scariest part of this is that they first kill off the immune system / bone marrow. That means all of the immunities I have gathered in a life time will be gone and I will have to start over. But it also means that any possible pre-cancer cells in the bone marrow should also be gone. 

    Granted I had a different type of cancer than your dad but SCT should give us a clean system building new blood cells. 

    All sorts of words of encourgement come to mind but when I think about you having just lost your fiance a few months ago, I really don't know what to say. I hope you have someone to talk to about how you are feeling. Make sure you spend what time you can with your dad. You will never regret it. Good luck to your dad & you.

    Linda

  • Liz888
    Liz888 Member Posts: 14
    #4
    lindary said:

    ASCT

    Last Dec I was told I had follicular non-hodgkins lymphoma. I was 64 at the time, now 65. Did 6 cycles of R-chop which reduced the cancer but did notput it into remission. So the next step was 3 cycles of RICE in preparation for SCT. The RICE was completed in Oct (put me into remission) with the SCT to start in Nov. Went through all of the tests and just before I was to start the prep work to build up my t-cells they stopped.

    The final results on the bone marrow biopsy came back and had some abnormal cells in there. It was deteremined they were MDS (Myelodysplastic Syndrome). They are damaged immature blood cells that can develope into an agressive form of leukemia.  So all plans were cancelled. Oncologist said that we need to go with t-cells from a donor. They are going to set up a new schedule after the first of the year. To me the scariest part of this is that they first kill off the immune system / bone marrow. That means all of the immunities I have gathered in a life time will be gone and I will have to start over. But it also means that any possible pre-cancer cells in the bone marrow should also be gone. 

    Granted I had a different type of cancer than your dad but SCT should give us a clean system building new blood cells. 

    All sorts of words of encourgement come to mind but when I think about you having just lost your fiance a few months ago, I really don't know what to say. I hope you have someone to talk to about how you are feeling. Make sure you spend what time you can with your dad. You will never regret it. Good luck to your dad & you.

    Linda

    Thank you, Linda!

    You and Po18Guy are my new heroes.  I genuinely hope RICE works for my dad too. Treatment is scheduled to start next week and that's the chemo they were taking about doing.  More later,  Linda! You're a real inspiration! 

  • Sten
    Sten Member Posts: 162 Member
    #5
    Liz888 said:

    Thank you, Linda!

    You and Po18Guy are my new heroes.  I genuinely hope RICE works for my dad too. Treatment is scheduled to start next week and that's the chemo they were taking about doing.  More later,  Linda! You're a real inspiration! 

    ASCT can work

    Hi Liz888,

    I had highly malignant primary central nervous system lymphoma (PCNSL), a brain tumour in my cerebellum, in 2012. I got ASCT and have been in remission since then. There is hope. Good luck!

    Sten

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