Hello all!! This board seems to have slowed down in recent months!! Surely you guys have questions or comments!!
Here is my question. Is anyone else out there having trouble gaining energy level back after completing Hyper-CVAD and starting on maintenance? I just can't get back to where I was
before this nightmare started. Last week I was on a trip with my mother, we did alot of walking several days. Granted my legs were killing me towards the end, but I kept going,
It has been over 4 days since we returned and I still feel SO EXHAUSTED!!! This is just driving me nuts. I went to grocery story yesterday and was just done afterwards. Had zero
energy or even willpower to do anything.
Is anyone else dealing with lack of energy, having trouble getting energy level back, etc.???
My husband has been going through treatment since 2009. He has zero energy. The exhaustion is extreme, and yes, we have discussed it at length with his doctors, and his nurses. Yes, we have looked at all his medications. It is inherent in most chemo medications, or medications to control the side effects of this treatment, to suffer from fatigue. There are also no real answers as to how long the fatigue will last. I have heard from people who have completed all treatment and are still fighting fatigue a year later. Good luck!
Thanks Missouri!! You made me feel better. May I ask a nosey questions? How old is your husband and what did he do before dx?
Some have indicated that if you "in shape and active" before dx that you would return to this level more quickly. Hummmm.....
Right now it is still just day to day.
What do you do for the constant fatigue? Have you found anything that helps? We have tried almost everything under the sun, but I keep hoping someone will have a new suggestion. With the neuropathy in his hands and feet, just standing can be very painful, which limits how active he can be. We did physical therapy for awhile, which did help some, but the insurance will only pay for a certain amount of time, and I can't afford it otherwise.
HI - I wish there was some magic that would make our energy come back. I am 4 1/2 yrs in remission and I still am not back 100%. Now I wasn't as fit as your husband and you were but I was in my second year of getting into shape and had lost 60 pounds. I have learnt to take it slowly - All I can tell you is that it takes time. I get frustrated but my son reminds me of all that I can do now that I couldn't when I got home for hospital. I started very simply by walking - down the hall to my bedroom - out to mailbox - down the road ( about .2mile) - 4 years later I can walk 3 miles - exhausted at the end but so much more than where I began.
My son ( was home through most of it) reminds me constantly when I am feeling down that the took all strength from my body and now I have to build it back up, Its not like it was before got sick - its like being a baby. Helps but still frustrating but it just takes time.
About the neuro---. that too just takes time. My hands are good to go Feet just when very tired but my mouth also went - just left side and its still not back. Am hoping that it will come completely back - though it is a reminder that I have come a long way but still have more to go, It stinks majorly but coming to this site helps . Most of what we are going through someone else(unfortunately) is or has also gone through it and there is a light at the end of the road.
Hope this has helped. Wish it weren't so
Hi , finished maintenance in 09. I still don"t feel that I have all my energy back yet. I have started pushing but always feel exhausted and it is annoying to say the least. It is getting better but its in small increments. My son keeps on reminding me how much I have improved but I think that I am just frustrated and impatient. If I am better I want to feel as good as I did before . Only thing I believe is that I will eventually be just as good if not better in time. lol. Don't know how much this helps but he does have company and its slow and steady.
SO glad to read your post. Did you go through Hyper CVAD and the POMP maintenance? I totally understand the always feeling exhausted!!
If I push myself to get out and do something, the next day I am usually wiped out. Granted WBC count is really low, and has been for a month (1.5 and under) it is not like this is a new thing (to have low WBC) so just don't get it.
I feel guilty - that I should be up and going by now. (I finished Hyper CVAD in January 2011, dx in March 2010). But it is not happening!!
Thanks again for your post!!