Need help to cope...

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haw1114
haw1114 Member Posts: 7
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi Everyone!

The reason I'm writing is I'm looking for advice on how to help my mom deal with my stepfathers NHL diagnosis.

Just to give you a background...here is the skinny on the situation..
My stepfather went into an urgent care clinic in March for lower back pain..the physician did an xray and he came home with a diagnosis of an unidentified chest mass. Later that week he was diagnosed with NHL - stage 3b. Throughout the summer he went through chemo and was considered to be in 'remission' - however that only lasted a matter of days (until they did a follow up pet scan which revealed it had returned).
Since then his cancer has progressed to his bones and he also now has leukemia.

I have a strong medical background and understand the progression of this disease and realize that his days may in fact be numbered, but, I also know that there is some hope. Unfortunately my mom has not been able to deal with this very well...or at all really. She has her own chronic health issues, but is totally unable to focus on anything positive, talk about the future, and/or rally around her husband and cherish the time they do have left together. And, in spite of all of this, my stepdad (the person with NHL) has remained totally optimistic and just wants to get better.

This is so hard to wach and I feel really insensitive to the situation as after dealing with such negativity for almost 8 months, I have begun to pull myself away from the situation. Not to mention, I got married three months ago...and my mom virtually missed everything because she couldnt focus on anything but cancer...

Do any of you have any suggestions - I'm trying to remain strong for my stepdad but its starting to wear me thin. Please help. :/

Thank you in advance...

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  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
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    Haw,
    What type of lymphoma
    Haw,
    What type of lymphoma does he have? There are several types. Indolent,follicular,diffuse large B cell,T-cell and 3 different grades as well, etc. It may be best to know what type we are talking about. Stick with us cause we can help. John
  • haw1114
    haw1114 Member Posts: 7
    #3
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    COBRA666 said:

    Haw,
    What type of lymphoma
    Haw,
    What type of lymphoma does he have? There are several types. Indolent,follicular,diffuse large B cell,T-cell and 3 different grades as well, etc. It may be best to know what type we are talking about. Stick with us cause we can help. John

    Type of NHL
    John,
    Thank you for your reply! I'm sorry I forgot to put the type of NHL.
    It is agressive T-Cell Lymphoblastic lymphoma.
    I will definately stick with you guys - thank you again!

    Holly
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #4
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    haw1114 said:

    Type of NHL
    John,
    Thank you for your reply! I'm sorry I forgot to put the type of NHL.
    It is agressive T-Cell Lymphoblastic lymphoma.
    I will definately stick with you guys - thank you again!

    Holly

    Type of NHL
    Holly,
    I have follicular NHL. It is the slow growing type. I believe there are a few people on here with the T-cell type. I know very little about it except it has to be dealt with rather quickly. There are several aggressive types as you know,but the treatment has come a long way in the past years.Isee he has stage 3 which of course you already know means its not in the bone. Even if it was it would be treated the same as a stage 4. I see he has the b symtoms(night sweats, weight loss or fever. Stay away from the web sites. They can really confuse you. They are good for stats,but we are individual people not stats. Hope that makes sense. Like I said someone with a lot more knowledge than me will get back to you. John(FNHL-1-4A-5/10) FOLLICULAR NON HODGKINS LYMPHOMA GRADE 1 STAGE 4 ASYMTOMATIC
  • haw1114
    haw1114 Member Posts: 7
    #5
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    COBRA666 said:

    Type of NHL
    Holly,
    I have follicular NHL. It is the slow growing type. I believe there are a few people on here with the T-cell type. I know very little about it except it has to be dealt with rather quickly. There are several aggressive types as you know,but the treatment has come a long way in the past years.Isee he has stage 3 which of course you already know means its not in the bone. Even if it was it would be treated the same as a stage 4. I see he has the b symtoms(night sweats, weight loss or fever. Stay away from the web sites. They can really confuse you. They are good for stats,but we are individual people not stats. Hope that makes sense. Like I said someone with a lot more knowledge than me will get back to you. John(FNHL-1-4A-5/10) FOLLICULAR NON HODGKINS LYMPHOMA GRADE 1 STAGE 4 ASYMTOMATIC

    John,
    Thank you again for
    John,
    Thank you again for your help.
    I agree - the internet is helpful, but as I tell my mom...you can find anything you want to see or hear if you look long enough. I have tried to guide her and give her only factual information and information from the ACS, but she seems fixated on finding statistics, typically not very good ones.
    Do you know what kind of prognosis we are looking at seeing as it has traveled into his bone marrow?
    We were scheduled to go through a BMT in January (his brother is a perfect match), but since it has progressed they called it off because he no longer is able to go into remission... Does that sound right?
    I have to remember, all of the information I am getting is from my mom and stepdad (who has no medical background what-so-ever).

    Sorry for all of the questions.

    Take care!
    Holly
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #6
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    haw1114 said:

    John,
    Thank you again for
    John,
    Thank you again for your help.
    I agree - the internet is helpful, but as I tell my mom...you can find anything you want to see or hear if you look long enough. I have tried to guide her and give her only factual information and information from the ACS, but she seems fixated on finding statistics, typically not very good ones.
    Do you know what kind of prognosis we are looking at seeing as it has traveled into his bone marrow?
    We were scheduled to go through a BMT in January (his brother is a perfect match), but since it has progressed they called it off because he no longer is able to go into remission... Does that sound right?
    I have to remember, all of the information I am getting is from my mom and stepdad (who has no medical background what-so-ever).

    Sorry for all of the questions.

    Take care!
    Holly

    yes
    I had NHL with bone marrow involvement, and yes Holly if you are not in remission they will not do it. Did they talk at all about radiation, if the cancer did not leave my pelvic bone, the next step was radiation. The chemo did it's job for me so far. Try to tell your Mom that their are a lot of success stories out there. We only have control of our emotions, be as positive as possible. I beat cancer twice................ wishing you and your family well.... Vinny

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