HD survivor w/ questions

jllara
jllara Member Posts: 1
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I am a survivor of HD that has been in remission for 6 years now. I was diagnosed in 94' with stage IV Hodgkin's, went through six monthes of ABVD chemo and have been relatively healthy since. I admire all you so much for continuing to fight and live with this disease.
My question is this: Any of you who are in remission, do you experience any continued fatigue while exercising? My doctor told me some of the chemicals in ABVD can scar your lungs. Has anyone had experience with this? Any advice on helping this side effect?

Comments

  • grein
    grein Member Posts: 1
    #2
    Fatigue is one of the side effects of many chemotherapy protocols and/or radiation therapies that the doc's don't seem to know how to approach or to handle. I am a four time survivor (since '89) and fatigue is the most bothersome and annoying lasting effect I've had since all my treatments. The most effective way I've found to combat the ever present fatigue is to eat a good, healthy diet full of veggies and fruits, rest when you're tired no matter what anyone else thinks, says, or expects, and slowly - and I do mean s-l-o-w-l-y - increase your level of activity. Gentle exercise of an aerobic nature (non-impact) is really good at helping to increase your stamina along with making sure that your vitamin and mineral levels are sufficient. This may mean that you have to take vitamin/mineral supplements and/or some herbal-type dietary aids. If you're near a university medical center go to their alterntive medicine clinic and investigate what they have to offer. Be sure to include your oncologist/radiologist in this as they may or may not be open to these types of after care and may be able to direct you to a better alternative.
    Good luck.
  • andy_pagin
    andy_pagin Member Posts: 2
    #3
    Fatigue is probably the most common side-effect of HD treatments (Rad or Chemo). I have been in remission nearly five years & haven't found an answer (I was only stage 1).
  • vickid
    vickid Member Posts: 2
    #4
    I am also a survivor of HD. Diagnosed in '89 with stage IIIB. I was treated with MOPP/ABV for six months and radiation for for 4 months. I have always had a level of fatigue that I have not been able to shake. I always thought that my fatigue and difficulties with breathing during exercise had more to do with chest radiation than with the chomo. It's interesting that they told you the ABV treatment can also scar your lungs. I didn't know that. I know I have some scar tissue in my chest cavity, and some tissue damage (from radiation). At any rate, I have adjusted to the fatigue level - vitamins help! And it doesn't take much for me to get winded so I have to adjust the level I exercise at - I couldn't run a marathon. But I can still work out. At least we have chemo to blame for being pooped and suckin' wind rather than just plain old age! :o) Good luck!
  • cschrock
    cschrock Member Posts: 5
    #5
    The problem you are having with the fatigue from exercising is true. My Doctor said the same thing and also some scaring from the radiation. I was diagnosed in 1998 with stage 2 Hodgkin's. Even today I get tired easly and have a hard time coaching my kids sports because I get fatigued easly. I hope this helps you. Stay healthy.
  • debrah
    debrah Member Posts: 4
    #6
    I experienced the same thing--my only advice is that I just keep doing it but have finally some respect for my body when it want sto stop. I no longer feel the need to prove anything to anyone--just do my workout and take it easy when I return to climb the stairs at home :)
  • randyvpuckett
    randyvpuckett Member Posts: 2
    #7
    debrah said:

    I experienced the same thing--my only advice is that I just keep doing it but have finally some respect for my body when it want sto stop. I no longer feel the need to prove anything to anyone--just do my workout and take it easy when I return to climb the stairs at home :)

    I had stage IVb with rads/ABVD/MOPPs and was left with permanent irreversible lung scarring (Pulmonary Fibrosis). I'm 36, a former athelete, with 30% lung function. I've been in remission for 12 years after a recurrence. Also, I went from a healthy 190 lbs to 150 lbs after treatment, to 127 lbs today, 10 years later. Doctors have yet to explain it... God bless you.
  • runr
    runr Member Posts: 15
    #8
    Just read your message about lung scarring. I just finished my radiation today for stage IIIb HD. Before radiation was told had some scarring in my lungs. Was pretty bummed because had run several marathons before and hope to still run one. Any one have experience with running marathons after treatment?

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