Post treatment tiredness

Copytext
Copytext Member Posts: 1
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
My first time - be gentle with me !

A very sporting male, then aged 34, I was diagnosed as stage 2a HD in January 2001 and soon started 6 ABVD courses of chemo, followed by 5 weeks of radio in Sept. 2001. My Doctors told me in October 2001 that (thankfully) I was in remission.

During the treatments, (unlike seemingly everybody elses experience)I had less problems getting thru' the chemo than the radio. Literally from day one, the radio had left me exhausted, and to this day I still haven't got back to anywhere near the same energy levels that I had prior to my first symptoms of HD, or for that matter, even to the same energy levels that I had on the better days of my chemo ! A few drinks (post-treatment) now really seems to take it out of me!

Has anybody else had a similar experience ?

How are/were the energy levels of people that have been in remission for a similar amount of time (15 months)?

Does alcohol affect anybody else in terms of tiredness ?

Comments

  • dpomroy
    dpomroy Member Posts: 135
    #2
    A very sporting female, then age 41, I was diagnosed with HD 2B. One of my symptoms before diagnosis was that whenever I drank anything alcoholic my neck and shoulder would ache. I was told that this only happens with Hodgkins patients and even so very rarely. Apparently the affected lymph nodes didn't like the stuff! I find that even now, nearly 3 years later, my tolerance for alcohol is lower and I feel crummier when I dare to have that beer with my pizza, or the wine with my spaghetti. Since I haven't read any studies (bummer!) that indicate that alcoholic beverages actually promote faster healing, I'm keeping my celebrations to a minimum.
  • carpentert
    carpentert Member Posts: 13
    #3
    This is exactly what happened to me! It took me a good year to feel back to my old self again. Even walking up a hill put me down for a nap. Be patient... start changing some old habits, like eating better. You will get there! I did. (Can't give up beer though!)
  • Joe_G
    Joe_G Member Posts: 2
    #4
    carpentert said:

    This is exactly what happened to me! It took me a good year to feel back to my old self again. Even walking up a hill put me down for a nap. Be patient... start changing some old habits, like eating better. You will get there! I did. (Can't give up beer though!)

    I was 21 when I did chemo and not very active and I noticed that the chemo really took it out of me. Plus if I drank a beer it felt like someone ran over my body the next day. I decided I couldn't wait for it to pass I had to do something about it. I began weight training 3 months into my chemo. Even when I felt I couldn't move an inch, I would drag myself into the gym and do some light weight training.
    I can't even stress what a difference it made. For one, I began to keep on some weight, as the HD made me thin as a rail. Also some of the color returned to my skin. And to be honest about a week or two after my last chemo, I felt completely fine. Since then I've continued weight training and cardio heavily, to the point of almost being addicted. I really feel like it saved my life.
  • brichz
    brichz Member Posts: 2
    #5
    Hello. my name is Bob (handle is brichz), I am 45 (43 at time of illness) I started my ABVD treatments in april of 2001, I did 16 treatments (took 7 months, with 2 set backs) a did 4 weeks of radiation , . During my chemo, is when I was my most active. I had climbed into my nephews car to install a car radio, I did a 3 hour hike, went to the local water park, camping, and walks, walked 3 times a day with my (3) dogs. After radiation was done, is when I became more tired, and I find it hard to excersize, staying busy is ok, but I can not hold back a morning nap. Even though It's been 10 months since last treatment (remission date is 1-25-02), I still get early morning sleepiness, I can wash the car, walk the dogs, stand for a fair amount of time, it's just with in 2 hours of waking up I have to lay down, but when I get up I'm good for the rest of the day. As for booze, I seldom drink, had a sip on new years eve, but about 8-9 months prior to that. Anyway, thanks for letting me express my side of the story.
  • coturstyle
    coturstyle Member Posts: 1
    #6
    brichz said:

    Hello. my name is Bob (handle is brichz), I am 45 (43 at time of illness) I started my ABVD treatments in april of 2001, I did 16 treatments (took 7 months, with 2 set backs) a did 4 weeks of radiation , . During my chemo, is when I was my most active. I had climbed into my nephews car to install a car radio, I did a 3 hour hike, went to the local water park, camping, and walks, walked 3 times a day with my (3) dogs. After radiation was done, is when I became more tired, and I find it hard to excersize, staying busy is ok, but I can not hold back a morning nap. Even though It's been 10 months since last treatment (remission date is 1-25-02), I still get early morning sleepiness, I can wash the car, walk the dogs, stand for a fair amount of time, it's just with in 2 hours of waking up I have to lay down, but when I get up I'm good for the rest of the day. As for booze, I seldom drink, had a sip on new years eve, but about 8-9 months prior to that. Anyway, thanks for letting me express my side of the story.

    Hi My Name is Stefanie (handle Coturstyle) I am 25 now, 19 when I was diagnosed with HD stage 2a. It has been nearly 6 years since my last treatment. I actually gained weight in Chemo! I thought eating took away the pain and nausea. I didn't even think my drinking "problem" was related to HD. I too feel horrible after 1 drink. And I notice that no matter what I do I never seem to have energy to do things. Does anyone know why alcohol has such an effect? Also does anyone have any dietary tricks for eating that helps boost energy. I miss the old me. I would like to not feel like I was roadkill by the end of the day.
  • sespohn
    sespohn Member Posts: 1
    #7
    coturstyle said:

    Hi My Name is Stefanie (handle Coturstyle) I am 25 now, 19 when I was diagnosed with HD stage 2a. It has been nearly 6 years since my last treatment. I actually gained weight in Chemo! I thought eating took away the pain and nausea. I didn't even think my drinking "problem" was related to HD. I too feel horrible after 1 drink. And I notice that no matter what I do I never seem to have energy to do things. Does anyone know why alcohol has such an effect? Also does anyone have any dietary tricks for eating that helps boost energy. I miss the old me. I would like to not feel like I was roadkill by the end of the day.

    I'm 21, diagnosed with 2a HD in late January after surgery and misdiagnosis as sarcoma, and I'm one ABVD treatment into an expected course of 12. I must hand it to everyone that recommends working out and eating healthfully. I've found that the closer I can get to food in it's natural state the better I sleep, feel, and probably am. As for exercise, I've been knocked off my routine for almost eight weeks, but have tried to maintain some basic yoga stretching, outdoor walking, and breathing relaxation techniques daily. On the days that I skip any of the above, I feel horrible. As I've healed from the original surgery and am "getting used" to the chemo, I'm increasing the intensity and frequency of my exercise. I've found it's best to forgive yourself...and give yourself lots of credit for even the tiniest thing you do for your health every day.
    Sarah
  • Chemosabe02
    Chemosabe02 Member Posts: 7
    #8
    sespohn said:

    I'm 21, diagnosed with 2a HD in late January after surgery and misdiagnosis as sarcoma, and I'm one ABVD treatment into an expected course of 12. I must hand it to everyone that recommends working out and eating healthfully. I've found that the closer I can get to food in it's natural state the better I sleep, feel, and probably am. As for exercise, I've been knocked off my routine for almost eight weeks, but have tried to maintain some basic yoga stretching, outdoor walking, and breathing relaxation techniques daily. On the days that I skip any of the above, I feel horrible. As I've healed from the original surgery and am "getting used" to the chemo, I'm increasing the intensity and frequency of my exercise. I've found it's best to forgive yourself...and give yourself lots of credit for even the tiniest thing you do for your health every day.
    Sarah

    I am a 50 year old male, formerly very physically fit, retired Army officer. A year ago I was diagnosed as: HD, Stage IIB, given 6 months ABVD chemo therapy. Have been in remission for 6 months and still get winded by a short jog or brisk walk. Does this get better? My doctor says "take it easy" which is not much of a help. I led an active life style prior to chemo, I hope to get back to that, but so far it has been tough, and sometimes scary. I tried the elliptical trainer and became dizzy and short of breathe. Can anyone provide any similiar experiences and lessons learned?
    Thanks.
    Doug
  • tclark
    tclark Member Posts: 1
    #9
    Hi I am 47 and wsa diagnosed with hd in 99, had 8 cycles and 27 radiation, I have been trying to talk to someone who feels like I do, I am not a lazy person, but i get tired so fast now, people do not really understand and when you ask the doctor, they just ask like you should be happy to be alive, which I am, I just have no energy. Thanks
  • jeeperskreeper
    jeeperskreeper Member Posts: 6
    #10
    sespohn said:

    I'm 21, diagnosed with 2a HD in late January after surgery and misdiagnosis as sarcoma, and I'm one ABVD treatment into an expected course of 12. I must hand it to everyone that recommends working out and eating healthfully. I've found that the closer I can get to food in it's natural state the better I sleep, feel, and probably am. As for exercise, I've been knocked off my routine for almost eight weeks, but have tried to maintain some basic yoga stretching, outdoor walking, and breathing relaxation techniques daily. On the days that I skip any of the above, I feel horrible. As I've healed from the original surgery and am "getting used" to the chemo, I'm increasing the intensity and frequency of my exercise. I've found it's best to forgive yourself...and give yourself lots of credit for even the tiniest thing you do for your health every day.
    Sarah

    Hey ya'll. I was 17 with Hodgkins 2a, now 18...4 months of remission. It really feels good to read your messages. I now know that this "lazy" feeling really is normal. I have to literally force myself to do simple task that I did (pre-CANCER) without even thinking. Getting back to COPYTEXT message, I to agree that RADATION just beat the crap out of me. I was got my neck zaped 25 time... I couldn't swallow soild food for a month after radiation without being in pain. Oh well, I guess I'll take it as a learning experince. If you share it, then it won't be in vain, right?
  • ESTERUCHA
    ESTERUCHA Member Posts: 1
    #11
    tclark said:

    Hi I am 47 and wsa diagnosed with hd in 99, had 8 cycles and 27 radiation, I have been trying to talk to someone who feels like I do, I am not a lazy person, but i get tired so fast now, people do not really understand and when you ask the doctor, they just ask like you should be happy to be alive, which I am, I just have no energy. Thanks

    Hi! This is my first time here. I'm a 33 female and I live in Spain. I am a survivor of HD IIa which I was diagnosed in 2001. I had 2-AVBD cycles and then 18 sessions of mantle radiation. I've been in remission since september 2001 (even though I still have a 9 cm fibrosis good tumour between my right lung and my heart) One month later I came back to my work as a general management secretary in a company. I must tell you that even though I started work with a different mentality and I didn't want to get much nervous, I didn't manage and soon after that I started to work for 9/10 hours a day (too much work which I couldn't end during the 8 hours working time). Gradually I have been feeling more and more tired, however, all the tests are OK and my doctor tells me I am in remission and that feeling tired is normal, especially nowadays.

    Tclark, I feel the same as you do. Even though I've always been very active, positive and good-humored (especially during my illness) now...a year and a half after the treatment... I feel I have no energy and I've got a fast heart beat from time to time. I've been off work for a month now and I tell my doctor I cannot face my work feeling like I do...I don't laugh as before. I cry very usually. I'm under medical heart tests but they think it's a nervous depression caused by my stressful life and my fear of getting ill again....Of course they could be partly right, but apart from the emotional side, there's also the physical side which nor the doctors or people in general seem to consider...What about the side effects? Couldn't that be caused by the treatment I received? Of course the treatment saved my life and I'm very thankful for that. I just want them or anyone to recognise I could be suffering from those side effects. I'm lucky my family and my husband are with me and give me all their support but I it seems to me that my managers at work don't understand me so well. And I must tell you I'm a very hard-worker...

    Thanks to all of you for sharing your cases, because that makes me feel I am not a "strange thing".
  • becca12056
    becca12056 Member Posts: 10
    #12
    I had the same experience. I was exhausted for at least two years after my radiation. It will get better.
  • NHL2000
    NHL2000 Member Posts: 8
    #13
    brichz said:

    Hello. my name is Bob (handle is brichz), I am 45 (43 at time of illness) I started my ABVD treatments in april of 2001, I did 16 treatments (took 7 months, with 2 set backs) a did 4 weeks of radiation , . During my chemo, is when I was my most active. I had climbed into my nephews car to install a car radio, I did a 3 hour hike, went to the local water park, camping, and walks, walked 3 times a day with my (3) dogs. After radiation was done, is when I became more tired, and I find it hard to excersize, staying busy is ok, but I can not hold back a morning nap. Even though It's been 10 months since last treatment (remission date is 1-25-02), I still get early morning sleepiness, I can wash the car, walk the dogs, stand for a fair amount of time, it's just with in 2 hours of waking up I have to lay down, but when I get up I'm good for the rest of the day. As for booze, I seldom drink, had a sip on new years eve, but about 8-9 months prior to that. Anyway, thanks for letting me express my side of the story.

    I have been off treatments for about 18 months but, I just started to feel back to myself. Someone suggested acupuncture, I tried it and work and fast. I tried everything else and nothing worked. It work for me but it is just a suggestion, but I highly recomended it

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