endless journey

kat5
kat5 Member Posts: 3
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
i've been dealing with hodgkin's for 4 years now. i just need to find someone to talk to. i've been looking and couldn't find anybody to talk to. if you know of anyone let me know. thank you, kat5

Comments

  • tamis
    tamis Member Posts: 33
    #2
    Hi there,
    I'd be willing to chat with you. I am battling Hodgkin's as well. It's been over a year. I just finished my second round of radiation. It's been a long struggle and I can't imagine you having to deal with this for four years. I would love to listen to you. With me talking with others, helps me deal with things. It's not easy, but having someone to relate sure does help! I hope to hear from you.
  • kat5
    kat5 Member Posts: 3
    #3
    tamis said:

    Hi there,
    I'd be willing to chat with you. I am battling Hodgkin's as well. It's been over a year. I just finished my second round of radiation. It's been a long struggle and I can't imagine you having to deal with this for four years. I would love to listen to you. With me talking with others, helps me deal with things. It's not easy, but having someone to relate sure does help! I hope to hear from you.

    Hi Thanks for writing back. I went through 1 1/2 radiation and 2 1/2 chemo. I was going to go through T cell transplant,but I failed my lung test. I see the doctor Dec.5,to tell me what is going to happen next. I'm scared because I was told that the transplant would cure me. So now what? I guess I keep on looking for the end of the rainbow. That's hard to do. kat5
  • tamis
    tamis Member Posts: 33
    #4
    kat5 said:

    Hi Thanks for writing back. I went through 1 1/2 radiation and 2 1/2 chemo. I was going to go through T cell transplant,but I failed my lung test. I see the doctor Dec.5,to tell me what is going to happen next. I'm scared because I was told that the transplant would cure me. So now what? I guess I keep on looking for the end of the rainbow. That's hard to do. kat5

    Hi. Do you know why you failed the lung test? I'm just curious. I had a Stem cell transplant back in April of this year. The reason was I had a huge mass on my lungs that wouldn't go away with all the chemo they gave me. With high hopes of a "cure" the Stem cell worked for the tumor in my lungs. We thought all else was gone too, but in September when I went for a CT Scan it showed more nodes swollen in my neck. Again, it was back to radiation to try and get them, hopefully. I won't have another round of Scans until January 18. I just pray this is it. If a Stemcell isn't the answer for you, there must be something out there that is. My doctor has told me because I often think it will be back, that there are excellent treatments for this disease. It's finding what works for you. I'm sure they will find the right one. My next step if needed will be a bone marrow transplant from a donor. My doctor had my siblings tested for precaution and my sister is a perfect match. I hope we don't need it! Please keep me posted on your Dec 5th appointment. Write if you want to talk some more. I'll be praying for you! You have been through so much. I am here to listen! Try to keep positive, even though it's tough. Tami
  • kat5
    kat5 Member Posts: 3
    #5
    tamis said:

    Hi. Do you know why you failed the lung test? I'm just curious. I had a Stem cell transplant back in April of this year. The reason was I had a huge mass on my lungs that wouldn't go away with all the chemo they gave me. With high hopes of a "cure" the Stem cell worked for the tumor in my lungs. We thought all else was gone too, but in September when I went for a CT Scan it showed more nodes swollen in my neck. Again, it was back to radiation to try and get them, hopefully. I won't have another round of Scans until January 18. I just pray this is it. If a Stemcell isn't the answer for you, there must be something out there that is. My doctor has told me because I often think it will be back, that there are excellent treatments for this disease. It's finding what works for you. I'm sure they will find the right one. My next step if needed will be a bone marrow transplant from a donor. My doctor had my siblings tested for precaution and my sister is a perfect match. I hope we don't need it! Please keep me posted on your Dec 5th appointment. Write if you want to talk some more. I'll be praying for you! You have been through so much. I am here to listen! Try to keep positive, even though it's tough. Tami

    Thanks for talking to me. i don`t know why my lung test failed,but I will find out when I see my doctor. Whatever I find out when I see him I will let you know. Thanks for being my friend. I will write more when I have more answers. Thank you again. Kat5
  • tamis
    tamis Member Posts: 33
    #6
    kat5 said:

    Thanks for talking to me. i don`t know why my lung test failed,but I will find out when I see my doctor. Whatever I find out when I see him I will let you know. Thanks for being my friend. I will write more when I have more answers. Thank you again. Kat5

    Hi again, just wanted to know if you would rather communicate through Email rather than this discussion group. My email address is SNS614@earthlink.net. It might be easier. Let me know your results!! I await my CT Scan, which is not until January 18th, but it's just as well. I want to get through the holiday's! Tami
  • dpomroy
    dpomroy Member Posts: 135
    #7
    tamis said:

    Hi there,
    I'd be willing to chat with you. I am battling Hodgkin's as well. It's been over a year. I just finished my second round of radiation. It's been a long struggle and I can't imagine you having to deal with this for four years. I would love to listen to you. With me talking with others, helps me deal with things. It's not easy, but having someone to relate sure does help! I hope to hear from you.

    Hi, I was diagnosed last August. I just finished my first course of 8 chemos for Hodgkins and have started a second. I don't know how anybody does this, it sucks! All I can handle is the next thing in front of me, whether that be the next test or treatment. If I look much farther ahead than that, I become a crying ball of mush. I don't know anyone else who is going through this, but if sharing the load with others like you helps, I'm game.
  • tamis
    tamis Member Posts: 33
    #8
    dpomroy said:

    Hi, I was diagnosed last August. I just finished my first course of 8 chemos for Hodgkins and have started a second. I don't know how anybody does this, it sucks! All I can handle is the next thing in front of me, whether that be the next test or treatment. If I look much farther ahead than that, I become a crying ball of mush. I don't know anyone else who is going through this, but if sharing the load with others like you helps, I'm game.

    Hi there, it's not an easy battle at all. I was diagosed in July 1999, & had several treatments of ABVD. I had the usual tests after that, with positive hopes and found the cancer still there. Had more ABVD, tests run and kept my fingers crossed, but the cancer still remained. I was switched to aggresive chemo treatments & a Stem Cell transplant, finally went to radiation and finished in July 2000. In September 2000, it was back!! I just finished another cycle of radiation and I'm waiting to go for CT Scans. I make myself crazy waiting for my tests and results and I try so hard to not become a basket case before I go. It's very hard to not. I still have a positive additude, but it still remains hard to not get worked up. I can relate with you. I wish you the best. Keep your chin up!
  • auntk
    auntk Member Posts: 2
    #9
    i'm new to this site and saw your note.

    i was diagnosed with hodgkin's four years ago. have you found someone to talk to about it?
  • cschrock
    cschrock Member Posts: 5
    #10
    Dear Kat5,
  • cschrock
    cschrock Member Posts: 5
    #11
    cschrock said:

    Dear Kat5,

    I got cut off for some reason. I would be glad to talk to you about what your going though. I am a three year survivor of HD.I had four cycles of chemo. and eighteen days of radiation. Also, I am the logistics chair for the Relay for Life in my home town, and on the board of advisors for the American Cancer Society. I do what I can to give back to thoughs who have helped me.So email me with any question or just to talk.

    Chuck~
  • lmpg
    lmpg Member Posts: 7
    #12
    Hi...

    Hope this finds you well and in good spirits. I'd be interested in your story... please share...

    I'm a now 38 year old mom and a Hodgkins survivor. Was diagnosed at age 37 Nov. 2001 by complete surprise. No family history, no medical problems/issues, went to the doc for one thing and ended up finding out I had Hodgkins.

    Just finished 12 rounds ABVD and 26 radiation treatments to the chest area. Feel great, did fine throughout.

    Share your story if you want. Would love to chat with you and offer shoulder, ear, warm heart and friendship.

    Lisa G :-)
  • lmpg
    lmpg Member Posts: 7
    #13
    auntk said:

    i'm new to this site and saw your note.

    i was diagnosed with hodgkin's four years ago. have you found someone to talk to about it?

    Hi auntk,

    I'm relatively new to this site as well and have just finished up 12 rounds of ABVD and 26 radiation treatments to the chest. Hodgkins came as quite a surprise in Nov. 2001 at age 37.

    With being a new official "survivor,", tell me... how do you get past the endless, constant worry? My spirits, attitude and outlook is very positive and remained so throughout this ordeal, which I believe doing that is half the battle.

    Now I worry about every ache, twitch, pain, etc.

    When does the energy level come back? Do you ever feel normal again?

    Lisa G.

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