14 year's in remission

curt191
curt191 Member Posts: 6
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi,
I was 17 the first time I had Hodgkins Disease. Treated w/radiation and had a reoccurance 2 years later then hit it with ABVD chemo. It've been in remission for 14 years. It's been good, had some problems with the thyroid from the radioation and can't have kids but It's worth it to be alive. I think my life has turned out radically different then if I didn't have cancer and in many respects I'm a better person becasue of it. I've been around the world and seen amazing things. Life is good, oh there's the occasional panic of finding a bump that turns out to be nothing and the yearly depression associated with the darkest days of chemo and the heart problems because of chemo and the hypothyroidism but I wouldn't trade it in because my eye's are open.
Curt

Comments

  • sillyspirit
    sillyspirit Member Posts: 20
    #2
    Hi...great story. I'm a survivor too and yes having cancer does change a person for the better. I stop now and smell the roses. I too have damage from all the radation and chemo but it was well worth it, I was blessed to be alive long enough to finish rasing my kids and now I'm a Grandma..a young one..I'm only 49. lol now I plan to live long enough to be a great grandma.
  • kavnan
    kavnan Member Posts: 12
    #3
    I have heard from so many people what a difference this has made in their lives and how they perceive things. I too feel that way even though it was my son and not me with cancer. It sure makes one appreciate life and learn to not sweat the small stuff. I do have a question for you. My son's doctor has indicated that he may have problems in the future with his heart and lungs due to the chemo. But, he hasn't said what kind of problems. Can you tell what problems you are having so I have some sort of idea of the possibilities and what may lie ahead. I appreciate your help.
  • sillyspirit
    sillyspirit Member Posts: 20
    #4
    kavnan said:

    I have heard from so many people what a difference this has made in their lives and how they perceive things. I too feel that way even though it was my son and not me with cancer. It sure makes one appreciate life and learn to not sweat the small stuff. I do have a question for you. My son's doctor has indicated that he may have problems in the future with his heart and lungs due to the chemo. But, he hasn't said what kind of problems. Can you tell what problems you are having so I have some sort of idea of the possibilities and what may lie ahead. I appreciate your help.

    The radation can cause lung cancer later in life and the chemo causes heart problems usually mild things like skipping beats or a murmor like I have which isn't a major problem. it's odd how the treatments help cancer but later can cause cancer. I had breast cancer due to the radition but it took 26 years to happen.
  • stepet
    stepet Member Posts: 69
    #5
    Hi, I finished radiation therapy only last March. I am terrified that it was not all taken care of. My ct-scans have been good, but the pet-scan I had 4 months after was still active. Should I be worried? I haven't found anyone else who has just had radiation with no chemo. I too have a sluggish thyroid now, and had every bad side effect from the radiation that you could possibally get. Would love to hear back. Sandi
  • tsivels
    tsivels Member Posts: 18
    #6
    stepet said:

    Hi, I finished radiation therapy only last March. I am terrified that it was not all taken care of. My ct-scans have been good, but the pet-scan I had 4 months after was still active. Should I be worried? I haven't found anyone else who has just had radiation with no chemo. I too have a sluggish thyroid now, and had every bad side effect from the radiation that you could possibally get. Would love to hear back. Sandi

    Hi Stepet,
    I wanted to know what kind of side effects have you had from radiation. I am about to start radiation in a couple of weeks and I would like to know what to expect.
  • dpomroy
    dpomroy Member Posts: 135
    #7
    stepet said:

    Hi, I finished radiation therapy only last March. I am terrified that it was not all taken care of. My ct-scans have been good, but the pet-scan I had 4 months after was still active. Should I be worried? I haven't found anyone else who has just had radiation with no chemo. I too have a sluggish thyroid now, and had every bad side effect from the radiation that you could possibally get. Would love to hear back. Sandi

    The radioactive glucose in PET scans show highly metabolic cells. Cancer is a highly metabolic cell; but there are other areas where you might have these highly metabolic cells, like for example an old injury that is healing. My pet scan lit up some of my ribs...it ends up that my sore sides from a 4 month, horrible, long, cough cracked 3 of them. I know how worried you probably are, but I guess what I'm saying is not to jump to the worst conclusion. Have you talked to your doc, or his nurse about this concern?
  • stepet
    stepet Member Posts: 69
    #8
    tsivels said:

    Hi Stepet,
    I wanted to know what kind of side effects have you had from radiation. I am about to start radiation in a couple of weeks and I would like to know what to expect.

    Hi tsivels, I only went through radiation and had treatment every day for a total of 20. They zapped me pretty good in the mantle field area. I suffered from vomitting right after treatment and throughout most of the day, I had a severe sore throat so much so that I was unable to drink or eat. I also got such bad thrush that it didn't totally go away until I had finished my treatments and was treated again with more medication for it. I needed fluids by the end of treatment because I didn't eat or drink anything, I couldn't! Just make sure to be prepared and don't let them make you think it is in your head if you are suffering from any side effects. I know I felt like an alien, because they made it seem like nobody ever reacted this way. I wish I only felt tired and sore, but any side effects are possible and I know I got them all! Just be informed and make sure your doctor is too. All the best and keep us updated on your progress.
  • curt191
    curt191 Member Posts: 6
    #9
    stepet said:

    Hi, I finished radiation therapy only last March. I am terrified that it was not all taken care of. My ct-scans have been good, but the pet-scan I had 4 months after was still active. Should I be worried? I haven't found anyone else who has just had radiation with no chemo. I too have a sluggish thyroid now, and had every bad side effect from the radiation that you could possibally get. Would love to hear back. Sandi

    Hi Sandi,
    I had radiation to the upper and lower mantel in 1986-87 (6 months). About 16 months later I found some lumps under my arm and my ct scan found that the grapefruit in my chest had started to grow again hence the chemo, biopsy, bone biopsy, all the fun stuff. I don't honestly know if you should be worried or not (you probably will not be able to help being nervous considering what you just went thought). As dramerth mentioned talk to your dr because it could be other things. The first time I got a head cold after chemo I thought I had cancer again. Your body is an amazing thing have faith in it.
    good luck and eat your veggies!!!
    Curt
  • Sunflower78
    Sunflower78 Member Posts: 4
    #10
    I just finished ABVD and radiation in August 2003. How did you find out you can't have kids? Is it from the chemo?
  • curt191
    curt191 Member Posts: 6
    #11
    Sunflower78 said:

    I just finished ABVD and radiation in August 2003. How did you find out you can't have kids? Is it from the chemo?

    sunflower78 (is that from kurt vonnegut?) I belive my not being able to have kids is from the surgery I had. When I had my very first exploritory surgery to figure out how far the cancer had spread (laperotomy) I was told they cut a sympathetic nerve to my reproductive system. This was 1987 and I was not given the option of banking sperm but I was told that the laperotomy had risks. Basically when I ejaculate there is no fluid at all. Probably saved me from being a dad a few times but as you survive and get older there are quality of life issues that come up that you don't think of when your kicking cancer in the teeth. Lot's more but that's the general way I found out.
    curt
  • stepet
    stepet Member Posts: 69
    #12
    dpomroy said:

    The radioactive glucose in PET scans show highly metabolic cells. Cancer is a highly metabolic cell; but there are other areas where you might have these highly metabolic cells, like for example an old injury that is healing. My pet scan lit up some of my ribs...it ends up that my sore sides from a 4 month, horrible, long, cough cracked 3 of them. I know how worried you probably are, but I guess what I'm saying is not to jump to the worst conclusion. Have you talked to your doc, or his nurse about this concern?

    Hi dramerth, I have had 2 ct-scans since my first pet scan. They told me that the activity was in the same place where my cancer was and that it was most likely due to the radiation. I guess I just hope my next pet-scan in March comes back clean. I became worried when I started to have some interesting things happen, itch, fatigue, and depression. All signs of hodgkins, the good news was that it seems to have come from my thyroid. Yes it was killed by the radiation. I hope now I will start to feel better and I won't be as worried. Sandi
  • gp09
    gp09 Member Posts: 18
    #13
    Sunflower78 said:

    I just finished ABVD and radiation in August 2003. How did you find out you can't have kids? Is it from the chemo?

    I had just the chemo and was worried about being able to have kids so I got tested and everything is fine.That was 9 years ago. I didn't have any kids after chemo. I'm 49 and now look forward to grandchildren instead of more kids of my own.

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