It is almost 4 weeks since I finished radiation 2nd time and chemo. I expected to start to feel better but I don't. The truth is I probably feel worse today then I did two weeks ago. I've had 130 GY total so I know thats a lot...but I did expect some relief.
I keep getting bouts of thrush and need to take liquid oxy to keep my throat under control. Scheduled for PET and CT the end of Feb. This is getting old quick.
Steve Hurlock

As you probably know, it takes time even for a veteran. The chemo and radiation wears you down physically, including your immune system, which is probably why you keep getting thrush, a fungal infection. The Oxy pain meds can also make you tired, and has side effects of its own. I assume you are doing the salt water, baking soda, and other oral rinses? Diflucan, flocomizole, is often prescribed for effective treatment of Thrush, and I often say to change your toothbrush to keep from reinfecting yourself. Thrush, basucally a yeast infection, feeds on sugar, alcohol, yeast and processed foods, so you may want to look into that too. Good luck with your PET. Mine is 2/19.

You might want to ask the doctor for a full blood work up besides the usual CBC to include a the TSH, Vit D, testosterone, and A1c to see if there are any deficiencies.

Steve, sorry you arent feeling better!

Hows your nutrition? Are you still pushing the calories and hydration? For at least the first year you will need to continue the minimum of 2500 calories daily and 48 oz of water. If you are getting that much every single day then try to boost it and take in extra for a few days and see if that makes a difference. I would suggest going for 3500 calories and 60 oz of water every day for 5 days and see if you feel any different. Even with taking in that much you probably wont gain an ounce as your body is struggling right now to rebuild itself so its burning up calories like crazy.

Thats just my suggestion. Maybe it will help. I know you want to be well so badly and its very frustrating not making more progress. Time will heal you and soon you will be feeling a little better. Recovery isnt like one day you wake up and you are well again, its a very slow go of it with small improvements along with set backs. Hope you feel better soon.

Hi Steve,
It sucks...We know. Vent away on here, then vent some more as you wait it out. Please try to be patient with yourself though. I feel like anything else I would say would just be blah, blah...so, hang in there. ;o)
Cheers,
Kathy

Time. It all takes time.
Hang in there Steve.
Tammy

Steve, we're all pulling with you on this. Keep up the good fight, buddy.

Steve 130 GY ... you are sure you are not turning green? (Hulk)
That is a hell of an overall dose. Hang in there!
A >6 Gy (whole body dose) is nearly 100% fatal. You have a right to feel crappy!!

Best !

You WILL feel better and the sun will shine again for you, but as the others have said you are expecting far too much from your medically abused body. The problem is that the improvement will happen in such minute stages that you won't notice them until, say two weeks have passed and you notice that you can be active for 10 minutes longer than you were. Real challenge here is to try to keep depression from getting a firm hold.. How can you be mentally healthy when you don't feel well?

And while babies grow while they sleep, we adults hear when we sleep. If you need help getting a sound sleep - talk to your doctor. Great nutrition and good sleep will help. Hang in there.

Donna

Steve

You don't feel better because you are perfectly normal for those of us in the over 130 GY club (Kelly -190, me - 137, Paul B 135.) It's unrealistic to think that our recovery will be similar to the standard 70 - 77 GY TX that some radiologist still think is the maximum. Markus' post makes the point with subtle humor that our doses are extremely toxic. My RO said the way to look at it is that while the damage is so bad, it's not as bad as what the cancer would have done without it.
I foolishly thought this last round would be easier after so much . Instead the recovery is slower. At 4 months after radiation and chemo over, I did not expect to suddenly develop radiation induced COPD that lead to my emergency hospitalization this week. Suddenly, I'm on a nebulizer every four hours and steroids just to keep my airways open.
My RO did put me back on the Fentanyl patch which is much better consistent relief.
I could not have said it better [quote]This is getting old quick[/quote] . Unfortunately, only tincture of time is going to work here.
Hang in there brother.
Charm

Thanks guys for the upbeat...and Charm I hope this does not get any worse. I have some good days and then wham!!!! (where did those good days go). Today if feels like my throat is half closed. Doctors never tell you about the long term possible side affects...I don't think they really know what to expect from their patients.
The first go around was a piece of cake to this. I may have to go back on the patch also. I cut down less than 25mg but it does not seem to help...much more makes me spacey. Thanks Steve HurlocK