Long term effects from Radiation and Chemo and Zevalin

hilde451
hilde451 Member Posts: 229 Member
I am so very tired I get up from bed and one hour later could go back to sleep.
I just can not shake this tiredness. My last cat scan was in March. It was good.
Somehow I just feel like something is not right. I go for my next appointment on Sept. 1.
I guess it is just puzzling to see what you get left with. Mine was follicular non-hodgkins
lymphoma stage 4.
I first did Radiation in 04. 20 treatments total.
Then I was home free for almost 5 years. And it came back. Then did the surgeries and 8 treatments of R-Chop. Then I did two more Rituxin, and then the Zevalin.
My problem is I just can not seem to get my energy back. Does everyone else have that problem?
I sure wish you all good results.
Hilde

Comments

  • yesyes2
    yesyes2 Member Posts: 591
    Long term effects
    Hi Hilde,
    I so know what you mean about the fatigue. I'm 5 months out of treatment and although my energy has improved since chemo it's still not good or anywhere near back to before my recurrance. My onc hasn't a clue as to why I'm so tired. I'm pretty much one good day and than one bad day. Have to plan what I do with a day of rest in the middle. I get so tired and than can't sleep. Do you do that too?

    But we also need to be kind to our bodies. They have been through a lot in the last few years and it does take a long time to recover. Some say up to one year after treatment end.
    Sending you lots of good wishes,
    Leslie
  • hilde451
    hilde451 Member Posts: 229 Member
    yesyes2 said:

    Long term effects
    Hi Hilde,
    I so know what you mean about the fatigue. I'm 5 months out of treatment and although my energy has improved since chemo it's still not good or anywhere near back to before my recurrance. My onc hasn't a clue as to why I'm so tired. I'm pretty much one good day and than one bad day. Have to plan what I do with a day of rest in the middle. I get so tired and than can't sleep. Do you do that too?

    But we also need to be kind to our bodies. They have been through a lot in the last few years and it does take a long time to recover. Some say up to one year after treatment end.
    Sending you lots of good wishes,
    Leslie

    Long term effects
    Hi Leslie:

    I am glad you answered my post. I have nights where I do not sleep at all. Till toward Morning. I never have had that problem before. But I am 7 months out of treatment. You would think it is getting better. But it is not. But I consider my age (65) I do think you don't spring back as fast. You know I sit here and think sometimes on all the radiation and chemo and Zevalin what the long term effects are.
    Well I suppose we find out. I sure hope you are doing well. I want to thank you again for answering my post. I really hate to complain. But this gets in your mind.
    Hope you have a wonderful day tomorrow.
    Hilde
  • yesyes2
    yesyes2 Member Posts: 591
    hilde451 said:

    Long term effects
    Hi Leslie:

    I am glad you answered my post. I have nights where I do not sleep at all. Till toward Morning. I never have had that problem before. But I am 7 months out of treatment. You would think it is getting better. But it is not. But I consider my age (65) I do think you don't spring back as fast. You know I sit here and think sometimes on all the radiation and chemo and Zevalin what the long term effects are.
    Well I suppose we find out. I sure hope you are doing well. I want to thank you again for answering my post. I really hate to complain. But this gets in your mind.
    Hope you have a wonderful day tomorrow.
    Hilde

    Late night
    Hi Hilde,

    Guess tonight is my turn to not sleep. Sorry your having a difficult time right now. Sometimes my brain just doesn't slow down, and when it gets like that I just go with.
    After my breast cancer treatments the onc said it would take a year to get back to normal. Well Rchop is much rougher that my other chemo so I figure at least a year.
    And maybe it's just not good to think too much.
    Hope today is good for you my friend.
    Leslie
  • merrywinner
    merrywinner Member Posts: 626
    Hi Hilde.
    So sorry to hear that you are still battling. I think it just takes a long time. How have your blood counts been? If they are still affected you will probably notice that, by not feeling just right. The body has to work so hard to correct it but that=tired for you. Also you have had so much done. As my MD explained it to me when I mentioned the fatigue, it's not any one treatment but the cumulative effect of everything including drugs and treatments, worry, running back and forth for appointments,tests,procedures and maybe a little depression thrown in for good measure. I guess,if it were me, I would schedule an appointment with my Primary MD and just vent it all out and see what happens. I don't know your living situation. Do you work or have family that you live with? I'm not trying to pry but I think each persons current status can play a big part in how they cope from time to time. It's been such a long haul for you but it may be time to get proactive again and believe me I know how much none of us wants to do that. Sometimes I tell my husband " 1 more appointment for anything and I'm gonna freak out" but I don't and it does help. Go see your primary, tell them you've hit a wall and let them help you figure it out. Best of luck and keep in touch. Mary
  • kayebadoe
    kayebadoe Member Posts: 81

    Hi Hilde.
    So sorry to hear that you are still battling. I think it just takes a long time. How have your blood counts been? If they are still affected you will probably notice that, by not feeling just right. The body has to work so hard to correct it but that=tired for you. Also you have had so much done. As my MD explained it to me when I mentioned the fatigue, it's not any one treatment but the cumulative effect of everything including drugs and treatments, worry, running back and forth for appointments,tests,procedures and maybe a little depression thrown in for good measure. I guess,if it were me, I would schedule an appointment with my Primary MD and just vent it all out and see what happens. I don't know your living situation. Do you work or have family that you live with? I'm not trying to pry but I think each persons current status can play a big part in how they cope from time to time. It's been such a long haul for you but it may be time to get proactive again and believe me I know how much none of us wants to do that. Sometimes I tell my husband " 1 more appointment for anything and I'm gonna freak out" but I don't and it does help. Go see your primary, tell them you've hit a wall and let them help you figure it out. Best of luck and keep in touch. Mary

    I'm so sorry
    this is happening to you. I just had my 4th RCHOP and along with my treatments I have been having accupunture and taking chinese herbs to help build my blood. The treatments give me so much energy. Now I don't know after 5 or 6 but I am gonna keep getting them. Find a school close to you or if you are lucky enough to have insurance to pay for it go to a regular practioner.
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    kayebadoe said:

    I'm so sorry
    this is happening to you. I just had my 4th RCHOP and along with my treatments I have been having accupunture and taking chinese herbs to help build my blood. The treatments give me so much energy. Now I don't know after 5 or 6 but I am gonna keep getting them. Find a school close to you or if you are lucky enough to have insurance to pay for it go to a regular practioner.

    So Glad
    Kaye,

    I am so glad that you are getting benefits from the acupuncture. I know that I was thoroughly shocked at how much better it made things for me. You sound like you're doing great!

    Keep it up girlie!!
  • bettymr
    bettymr Member Posts: 1
    Long term effects
    I was first diagnosed with Follicular Lymphoma in 06, stage 4. Had 6 treatments of Chop-R followed by Rituxan every 8 weeks for 2 years. I know I had some bad times, but fortunately, I'm unable to remember the specifics. In 10/06, I started to see a physical therapist who came to my house weekly for private pay and I sincerely believe she has made my life better. She helped me to begin exercising and as I don't have a lot of self motivation, I joined a local gym and began going to water aerobics M-F. The PT continued to guide me and work on knotted muscles and I eventually began to work in the gym. That was 4 years ago and I continue to go to the gym M-F for about 1 1/2 hrs doing 30 min of elliptical and the rest in weights and stretching. Last year, 3 more nodules were found and I was given 25 radiation treatments. I still have tiredness, but I don't know whether it is physical or emotional and I guess it doesn't matter. I just have to live with it and make the necessary adjustments. It does get better with time. However, I believe that many alterations have been made to our bodies from the chemo and radiation (both for treatment and diagnosis). I would recommend exercise with a trainer to get you started. I've met some great people at the gym. I'm interested in your treatment with Zavalin as I may have to have it when the nodules return. Could you describe it and tell the deciding factor on it being prescribed for you. Just believe it will get better in time. Be kind to yourself. Bettymr