ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: hevreh on September 21, 2009, 06:13:51 pm
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Okay, fatigue was anticipated post CK radiation but came on delayed some weeks post-treatment. During treatment when on steroid Decadron, I was full of energy. Now I am bone tired, get headaches on exertion, the sun brings them on too as does head down as when touching toes. I'm told this is typical but it's frustrating and is affecting my attitude. I currently function at about 30% of former capacity and wonder what is a typical time frame before one gets back to former self. When trying to walk briskly, each step feels like a hammer in my head. Any others with like experiences?!! I want to exercise but the symptoms get the better of me.
Good news is I need ibuprofen less often, so this must be a good sign. Fatigue and headaches are the dominant symptoms. Balance is somewhat compromised from before CK and hearing seems preserved. I feel old for the first time in my life ... libido is shot too. Has anyone gone through rehab for various symptoms as mentioned here? Please share your experience and how long before feeling revived and vibrant again. Thx.
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I am a pretty dedicated Crossfitter. The thing I like about Crossfit is that it is perfectly scaleable. Try hitting the Crossift.com web site and then look for beginner workouts. It will take you about 10 minutes per workout for the first few workouts, and you work up gradually. Scaled to your abilities...
keep up the good work...recovery is tough. be Tougher!!!
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I personally did not have CK but if you go to the SEARCH box and just type in CK headaches, it will direct you to different posts.
Once you get the headaches under control, then the exercise will be easier. So just gotta take it slow and easy but don't sit/lie around too long! Walking is really the best way to go until you feel stronger,headache free.
I know STEVE had CK a couple of years ago, and he is one of the moderators so I'm sure he will chime in.
Things will get better. JUST slow and steady.
Maureen
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Doing a jig with one of your favorite moderator's often helps :)
Hey hevreh,
I know the fatigue is hitting you hard and it did (and on occassion, still does) hit me hard, even this far down the road post-CK (but, for me, I think my other medical issues also come into play, so for me, I only partially blame the AN journey).
Pls see this link for the "Brain Tumor and Fatigue" Brochure that I've mentioned in the past:
www.brainsciencefoundation.org/matriarch/documents/bt_and_fatigue.pdf
Written by Dr. Peter Black of Brigham/Woman's as well as Nancy Conn-Levin. Goes into great lengths about brain tumors (benign and malignant) and how fatigue affects us... and can be conquered. I hope it helps.
I know its been rough going lately and I'm sorry to hear this. As we know, "individual results may vary". My hope is that since its soon post-CK for you..... that the coming days and months ease up for you... and you will find the energy you have been missing. I have a sneaky feeling it will.
got that dance on reserve for you. :)
Phyl
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Hevreh, what you are going through is normal. Getting better is simply a waiting game: it will happen but takes time. In my case, I had profound fatigue for 2 months following CK. My balance was 15 to 20% worse for six months after getting CK. Then at the six-month mark, my energy suddenly picked up and my balance improved dramatically (to where it is now better than it has been in over 9 years).
Everyone is different but I expect that you'll be feeling great 6 to 12 months after treatment, as that seems to be the norm for people who initially have a rough time post-CK. While that may seem like a long time, it'll arrive before you know it. And one more thing: you might be feeling so bad now because your tumor is reacting strongly to the radiation -- a good thing! I had initial swelling (with attendant fatigue and dizziness) but also unusually pervasive necrosis (tumor tissue death) at 5 months post-CK. Six months later, my tumor shrunk dramatically. So my point is that your tumor might be on the "accelerated reaction and recovery plan."
Hang in there. It will get better soon.
Best wishes,
TW
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No question about it being a challenge. I had proton beam treatment in 2004 and had a rough time of it for a long time. It wasn't until I found standup 2 years ago and REALLY started pushing myself that I saw real improvement. Pushing yourself beyond what you think is possible can make all the difference in the world.
http://anausa.org/forum/index.php?topic=8379.0 (http://anausa.org/forum/index.php?topic=8379.0)