31 Year Hodgkins Survivor

conijo
conijo Member Posts: 17
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I wanted to give hope to anyone facing Hodgkins. 31 years ago when I was 23 I was facing death. by the time I found a "good" doctor I had only 4 weeks left to live. I had 4 months chemo and 6 months radation the doctors didn't think I would make it, they actually told my family to prepare for my death. Well, now at 54 years old I have 3 kids and 9 grandkids! I made it because I fought with my mind and my soul..I had little kids to live for, no way was I leaving them. Hang in there people Hodgkins is cureable. I'm living proof.

Comments

  • butlerdebbie
    butlerdebbie Member Posts: 6
    #2
    wonderful news and story! thanks for taking the time to share, to give all HOPE... thanks:):)
  • judamonster
    judamonster Member Posts: 4
    #3
    Thanks Conijo, I appreciate your story. My greatest fear is'nt death it's the fear of having to do this again. These last few month I have felt like I had just as well be dead. I just want to feel alive again.
  • conijo
    conijo Member Posts: 17
    #4
    judamonster said:

    Thanks Conijo, I appreciate your story. My greatest fear is'nt death it's the fear of having to do this again. These last few month I have felt like I had just as well be dead. I just want to feel alive again.

    Hang in there, I know that feeling all to well..I remember as if it was yesterday..30 years ago chemo was a heck more brutal. You will feel great again and go on without fear. it took me 5 years it get over the fear of ever going through it again and I never have. I did get breast cancer 5 years ago but didn't need treatments.

    My prayers are with you
  • toliveagain
    toliveagain Member Posts: 2
    #5
    your words are very inspirational thanks i have been in remission for 3 months and i am going to go for my updated pet this month i also have two little ones and i will fight tooth and nail too thanks
  • toliveagain
    toliveagain Member Posts: 2
    #6
    judamonster said:

    Thanks Conijo, I appreciate your story. My greatest fear is'nt death it's the fear of having to do this again. These last few month I have felt like I had just as well be dead. I just want to feel alive again.

    i never thought i would read someone having the same feelings as me i thought i was going crazy i kept asking god to forgive me because i didnt want to feel that way,, how do you deal with those feelins how?
  • woodsherry
    woodsherry Member Posts: 2
    #7
    toliveagain said:

    your words are very inspirational thanks i have been in remission for 3 months and i am going to go for my updated pet this month i also have two little ones and i will fight tooth and nail too thanks

    The bad feeling
    I have been in remission for almost 5yrs now from hodgkins and I know that feeling. Its like you are depressed it is said to be one of the side effects of going through chemo and having cancer. I take a anti depression pill that is called Effexor XR my regular doctor put me on it and I was first on a differnt medicine but didn't work but this one did, you have to find the right meds. for yourself but my gosh it made me feel normal and was at that state of wanting to die, Not like you really want to but you think it might make that depressed feeling go away because that feeling of crying and down all the time is horrible so Please tell your doctor about your feeling that way and mention maybe it might be depression. So don't feel alone ok I was once there Ok take care. You faught cancer you can fight this.
  • tarheis
    tarheis Member Posts: 4
    #8
    31 years remission Conijo?
    Do you have any long term effects from the chemo and radiation? I am at 15 years and am having some issues and can't seem to find a Dr who can help.
  • woodsherry
    woodsherry Member Posts: 2
    #9
    tarheis said:

    31 years remission Conijo?
    Do you have any long term effects from the chemo and radiation? I am at 15 years and am having some issues and can't seem to find a Dr who can help.

    What kind of issues are you
    What kind of issues are you having tarheis? I have alot of memory loss just can't remember simple things but I enventually remember but very fustrating. I get pain all over my boby in differnt parts like from my arms to legs its like shooting but does not last a long time. I am not real sure if it is from chemo or what it is from but started after chemo but i am in my forties now. I don't know if you are female or male but I also have very heavy bleeding durning that time or have it more then once a month everytime I turn around my period is here. I am sorry if to personaly but sometimes it may help each other out. If we know what is going on with each other so maybe the doctors may read these.
  • sandybe
    sandybe Member Posts: 40
    #10
    woodsherry said:

    What kind of issues are you
    What kind of issues are you having tarheis? I have alot of memory loss just can't remember simple things but I enventually remember but very fustrating. I get pain all over my boby in differnt parts like from my arms to legs its like shooting but does not last a long time. I am not real sure if it is from chemo or what it is from but started after chemo but i am in my forties now. I don't know if you are female or male but I also have very heavy bleeding durning that time or have it more then once a month everytime I turn around my period is here. I am sorry if to personaly but sometimes it may help each other out. If we know what is going on with each other so maybe the doctors may read these.

    issues
    You should talk to your doctor. There are things they can do for that kind of bleeding now, you don't have to live with it. A hysterectomy was the best thing I ever did. But there are other less invasive procedures and drugs that can stop that bleeding now too.
  • tarheis
    tarheis Member Posts: 4
    #11
    woodsherry said:

    What kind of issues are you
    What kind of issues are you having tarheis? I have alot of memory loss just can't remember simple things but I enventually remember but very fustrating. I get pain all over my boby in differnt parts like from my arms to legs its like shooting but does not last a long time. I am not real sure if it is from chemo or what it is from but started after chemo but i am in my forties now. I don't know if you are female or male but I also have very heavy bleeding durning that time or have it more then once a month everytime I turn around my period is here. I am sorry if to personaly but sometimes it may help each other out. If we know what is going on with each other so maybe the doctors may read these.

    Thanks for replying. I have
    Thanks for replying. I have pain in my chest wall that is basically a constant every day and some worse than others. Sometimes in my neck and arms as well. I am told it is from the radiation. I did have a partial hysterectomy in 2000 (at 8 years remission) due to the heavy bleeding which I am told was a combo of the chemo meds and the major scarring in my uterus from the radiation. I was blessed with two little ones before that. But it was one of the best things I have done. I have tried various meds for the pain from narcotic relievers to nerve blockers such as neurotin and zonogram. I am hoping to find someone who has been through the same and found success with someone, I have been to Dr after Dr and medicine after medicine.
  • blueroses
    blueroses Member Posts: 524
    #12
    More hope - 20 year survivor of non hodgkins lymphoma
    Had the baddest of the lymphomas - non - but after one recurrance 18 years ago I opted for a bone marrow transplant and although I was one of the first that used stem cells it worked big time. My transplant was autologus, meaning they used my own marrow since no cancer was found it in, so I didn't have to go through nasty side effects of donor transplants. I had total body radiation as well. So just wanted to let you know that like the person who survived 31 years after treatment so did I. Cancer is cureable, don't let them tell you otherwise and destroy your hope.
  • blueroses
    blueroses Member Posts: 524
    #13
    judamonster said:

    Thanks Conijo, I appreciate your story. My greatest fear is'nt death it's the fear of having to do this again. These last few month I have felt like I had just as well be dead. I just want to feel alive again.

    A life of fear?
    I posted another comment on this page about my experience with long survival so I won't repeat it but just had to add to Judamonster's comments because something I learned along the way in the cancer experience is that cancer can indeed be cured today but if you are cured, then how sad that cancer wouldn't stop you from living but fear does. A whole extended life of fear? Move forward, call yourself cured and don't look back. It's essential to survival.
  • blueroses
    blueroses Member Posts: 524
    #14
    woodsherry said:

    What kind of issues are you
    What kind of issues are you having tarheis? I have alot of memory loss just can't remember simple things but I enventually remember but very fustrating. I get pain all over my boby in differnt parts like from my arms to legs its like shooting but does not last a long time. I am not real sure if it is from chemo or what it is from but started after chemo but i am in my forties now. I don't know if you are female or male but I also have very heavy bleeding durning that time or have it more then once a month everytime I turn around my period is here. I am sorry if to personaly but sometimes it may help each other out. If we know what is going on with each other so maybe the doctors may read these.

    A price to pay
    I don't know what type of cancer and treatment you have had but I just thought that I would mention that there are a good number of long time survivors who have developed many late effects from the treatments. Of course it depends on lots of things but I myself have many that came up long after treatments and some that have just gotten worse, notably heart damage from chemo drugs, early arthritis, cataracts, respiratory problems, chronic fatigue and lots of nerve neuropathy. I had one of the most severe of treatments, a bone marrow transplant and total body radiation but now have had many side effects, some that have come on late but most have been there since after the transplant but have gotten worse with time. Cancer can be cured, I am proof as are countless others, but for some of us there is a price to pay, others sail through with seemingly no problems. Doctors are just starting now to realize this. They have known about late effects with people diagnosed and treated as children but now that medicine has come so far in cancer treatment those of us treated as adults are still here long after expectation and now we are showing late effects. Hang in there, a day at a time.
  • ldot123
    ldot123 Member Posts: 272
    #15
    blueroses said:

    More hope - 20 year survivor of non hodgkins lymphoma
    Had the baddest of the lymphomas - non - but after one recurrance 18 years ago I opted for a bone marrow transplant and although I was one of the first that used stem cells it worked big time. My transplant was autologus, meaning they used my own marrow since no cancer was found it in, so I didn't have to go through nasty side effects of donor transplants. I had total body radiation as well. So just wanted to let you know that like the person who survived 31 years after treatment so did I. Cancer is cureable, don't let them tell you otherwise and destroy your hope.

    Another 20 Year Vet
    Hi there,
    I am 20 years out from the last treatment for Hodgkins. Had chemo and radiation. Developed colon cancer 1.5 years ago. Had surgery and chemo and now NED. Just a word to long termers who had radiation - get a colonoscopy. There is a theory that the radiation may have caused the colon cancer. No way to prove this but there you go. Other than that (knock on wood) no Hodgkins.
    Cheers, Lance
  • flowingchi
    flowingchi Member Posts: 5
    #16
    DID YOU HAVE MANTLE CELL
    MY HUSBAND HAS NON-HOKGKINS MANTLE CELL SEPT 11, 08 He has gone through 10 days radiation and 5 out of the 6 treatments of
    RCHOP. I am looking to speak to a "surivor who has gone through RCHOP and what they do to keep in remission.
    THe pet scan currently show no cancer however with mantle cell we were told it's just a matter of time.. "it will come back"
    ANy suggestions... I do not know how to do this so I will leave you my email if you wish to contact me personally.
    flowingchi@comcast.net Thank you.. FLOWINGCHI
  • flowingchi
    flowingchi Member Posts: 5
    #17
    blueroses said:

    More hope - 20 year survivor of non hodgkins lymphoma
    Had the baddest of the lymphomas - non - but after one recurrance 18 years ago I opted for a bone marrow transplant and although I was one of the first that used stem cells it worked big time. My transplant was autologus, meaning they used my own marrow since no cancer was found it in, so I didn't have to go through nasty side effects of donor transplants. I had total body radiation as well. So just wanted to let you know that like the person who survived 31 years after treatment so did I. Cancer is cureable, don't let them tell you otherwise and destroy your hope.

    DID YOU HAVE MANTLE CELL
    I can't find anyone with mantle cell.
    DIagnosed in 11/11/08 completed RCHOP and now what to do as it "will come back" I am in "remissions" .. any suggestions

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