When will I relapse!!!!!

eknowles
eknowles Member Posts: 3
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Diagnosed January 2003, follicular NHL Grade IV (in marrow). 6 courses of Chemo (Rituxan, Cyclophosphamide, Fludarabine). I've been in remission since July 2003; still constantly tired, no energy. Feel like I have this HUGE hammer over my head waiting to fall at any moment. Seems like everyone relapses.

Comments

  • aschreiber
    aschreiber Member Posts: 1
    #2
    I also have follicular stage 4 NHL. I was diagnosed in May 2002. I didn't start to notice a difference in my energy level until Feb 2004. The rituxan really decreases our chances of recurrence. Hopefully we will never recur! The hammer will get smaller with time. Some days the hammer is so big, it is hard to function. As time goes on, you'll have fewer hard days...I promise!
  • Unknown
    Unknown
    #3
    this is always on my mind but i try to think positive, not religious. i'm 48, teacher, a grandma. I feel yucky but keep pushing myself to be better.sometimes i feel like no one understands how this makes you feel!
  • serangels
    serangels Member Posts: 10
    #4
    It is so good to hear someone else still feels bad after the fact. So many people act like - it is over go on with it already. My mind says ok but my body says forget it. I had large b-cell lymphoma stage 4 in my left lung. Had chop-R 6 months, 18 radiation treatments, and part of my left lung removed. I was diagnosed in April 2002 -completed all treatments in Sept 2002. This is my second go around with cancer - I had ovarian ca when I was 21 - I am now 40. When I had it when I was 21 I was trying desperately to have a child and it was found by chance - all I cared about is being able to have a baby - I got pregnant right after they removed the tumor so I didn't have any further treatment except regular check-ups, but this last time hit me and hit me hard. I know exactly how you feel about waiting for the hammer to fall. I keep thinking the other shoe is going to drop and this time the third time isn't going to be a charm. Every bump, every pain, being so tired all the time. I used to never get sick - I am a nurse and have been exposed to everything under the sun - now if someone sneezes on me I am catching it. I just want my life back and I don't know how to get it. Just remember you are not scared alone.
  • eknowles
    eknowles Member Posts: 3
    #5
    Thanks for all your kind responses. I know I should be calm and cool about all this but I've been that way all my life and I'm not sure I should be about this!!! I know what the onc is telling me but it is so different than the vast majority of the case histories I've read. I've had a difficult time discussing this with my wife for fear of upsetting her even more than she already is.
  • nikkismom
    nikkismom Member Posts: 18
    #6
    Hi there my name is Charlene, NHL stage 4, had tumors in liver, kidney, ovaries and up and down aorta. NHL in lymph nodes and in bones. they drained 4 1/2 liters out of me, that was May 2003 to Oct 2003. Survivor only of 6 months. I still get real tired. When I do not feel good somedays I always wonder in my head. But I have to keep (well try my best) positive and pray every day. I always worry about tests that come up , they say they are only routine but I sometimes always think the worst.(that is real postive huh?) Thank God for my Oncologist, he means the world to me, he and God saved my life. My email is sunbunni1@hotmail.com if you or anyone wants to write. God Bless and wish you the best of luck.
  • Unknown
    Unknown
    #7
    Wow, do we have a simliar situation! I was diagnosed July 4th 2003, follicular NHL Grade IV (in marrow, spleen, and liver). They gave me the standard 6 courses of Chemo/Rituxan too. I was declared in remission and everything seemed fine, except for some bad nerve damage now from the point of the biopsy in my groin.
    Oncologist can provide medication to beat being tired. The HUGE hammer over our heads can sometimes stem from the isolation that we feel after the treatments we are bombarded with, suddenly stop when you go in remission.
    Like you, I can honestly say that it felt wonderful being pampered during the treatments. Everyone was sincere, responded to your needs, then you go into remission, and suddenly your alone. While waiting for my monthly checkup with Oncologist, my mind just centered on waiting for the next relapse. I confronted my Oncologist and my regular doctor about the entire feelings I had. Both apologized and indicated that over 75% of us survivors, suddenly go into various stages of anxiety and/or depression. For me they said it was identical to the post depression I had returning from Vietnam. I finally had to agree. I do not believe the 'hammer' will never go away because NHL will be with us for ever, but I guarantee it will lessen as time goes by. Reach out to whatever doctor you can feel well with freely discussing your emotions. It works!

    PS: My oncologist is making ready for me to get on a maintenance program in May. This will be a weekly dose of Rituxin for 6 weeks. Studies indicate that if you faired well with the Rituxin the first time, a maintenance program before you relapse is supposed to really work.

    Fill free to contact me though CSN, or thomking4325@comcast.net
  • PennyLane
    PennyLane Member Posts: 1
    #8
    unknown said:

    Wow, do we have a simliar situation! I was diagnosed July 4th 2003, follicular NHL Grade IV (in marrow, spleen, and liver). They gave me the standard 6 courses of Chemo/Rituxan too. I was declared in remission and everything seemed fine, except for some bad nerve damage now from the point of the biopsy in my groin.
    Oncologist can provide medication to beat being tired. The HUGE hammer over our heads can sometimes stem from the isolation that we feel after the treatments we are bombarded with, suddenly stop when you go in remission.
    Like you, I can honestly say that it felt wonderful being pampered during the treatments. Everyone was sincere, responded to your needs, then you go into remission, and suddenly your alone. While waiting for my monthly checkup with Oncologist, my mind just centered on waiting for the next relapse. I confronted my Oncologist and my regular doctor about the entire feelings I had. Both apologized and indicated that over 75% of us survivors, suddenly go into various stages of anxiety and/or depression. For me they said it was identical to the post depression I had returning from Vietnam. I finally had to agree. I do not believe the 'hammer' will never go away because NHL will be with us for ever, but I guarantee it will lessen as time goes by. Reach out to whatever doctor you can feel well with freely discussing your emotions. It works!

    PS: My oncologist is making ready for me to get on a maintenance program in May. This will be a weekly dose of Rituxin for 6 weeks. Studies indicate that if you faired well with the Rituxin the first time, a maintenance program before you relapse is supposed to really work.

    Fill free to contact me though CSN, or thomking4325@comcast.net

    Thank you all for sharing your stories. Mine is a little different, but I share the same feelings as all of you.

    I was diagnosed with mediastinal Large B-Cell Lymphoma on Aug 4, 2003. It was Stage I NHL, I went throught 6 CHOP with Rituxin treatments and 20 radiation treatments, and I just finished in January.

    I'm getting ready to have my first PET scan since the cancer and I'm just so scared of what it may find. Everytime I have a small pain or a cold I immediately worry that the cancer has come back. I was just on the phone with my mother this morning and was very upset about the whole thing. I hate not knowing, I feel like I'm just counting down the time until I'm sick again. I get bogged down by thinking of all I have ahead of me: possibility of occurance, strong possibility of breast cancer, early menopause, possible infertility.

    Sometimes I'm just so angry, and other times I just feel helpless. As morbid as it may sound, I find a certain comfort in knowing that other people feel the same way about me.

    When you're sick you spend every waking moment working towards getting better, constant treatments and medicine. Then once you're better, you are just expected to move on with life, and often times that is so hard to do- you're left feeling helpless.

    Thank you for sharing your stories, they make me feel better about my own feelings.

    I wish all of you the best.

    Joanna
  • JOHN39
    JOHN39 Member Posts: 9
    #9
    I have done 8 treatments of chop therapy . In remission since 11/03. I asked the doctor the same question. He said could be tomorrow, next year, decades, or cured. No one knows. Rituxin is a fairly new drug, results in the future may show a cure .
    Good Luck
    John

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