2 months out and backslide?

missusS

Hi everyone,

My husband is now 8 weeks post treatement (35 rads/7 chemo) for hpv base of tongue.  Started to improve very gradually around week 6 post treatment but now are back with major pain and liquids only.  Thought was thrush but treated for that and didn't touch pain increase.  Now doing another thrush medication to make sure its gone and start lymphedema therapy Monday.  CTScan this week was clean and doc says it is just dryness?  Did give prednisone which I hope helps.  Constant tickle that causes coughing.  Also has unexplained skin/nerve sensitivities that move around - sometimes top of head for example.  Just feels weird.  Hate that we are back to just smoothies - too much sugar in the VHC boost in my opinion but can't get enough calories otherwise.  Try to limit dairy.  I know its some good days/some bad but this feels like a real reversal.  Anyone else go months before real progress?  Everyone originally said you would notice the improvements around week 3 or 4 post and we hoped to really be moving forward at this point.

wbcgaruss

missusS I Would Just

Like to say your husband is probably not the first one who had some setbacks. I am sure it is not completely uncommon. This treatment is tough and changes a lot of things in the short run and some things in the long run. It is tough on the body. I never knew they could put so many different chemicals in the body, give me so many meds, and radiated me heavily and I could survive it but somehow I did and your Hubby will too. The main thing I see here is the doctor looked over his CT Scan and says it is clear-great news enjoy that part. Hopefully, the new thrush medication will make a difference, and if he is having bad lymphedema that is no help either. I went for lymphedema treatment several times myself as it is a common situation in this treatment and also the lady gave me self lymphedema exercises to keep the swelling down and help the lymph system drain. He can do them every day. Maybe a couple of times a day as per their directions. I remember seeing the radiation people before treatment started and the chemo people and they all said this is going to be a very rough treatment and the radiation nurse told me that till I get the treatment and get recovered I might as well figure a year of my life.  I would venture to say she wasn't far off. In thinking back I did not have a smooth recovery myself. There were many small instances we worked through I can't remember them all and I wanted to document it but felt too crappy to write it down usually. Before all that started though I had to have a port put in and a feeding tube. Well back to my situation I had some problems during treatment not long after I started my parotid gland became infected and swelled up and I got a fever and went in the hospital for 4 or 5 days on heavy antibiotics and they had to pause radiation for a couple of days because my mask would not fit on and let me breathe properly. But they got me back on radiation as soon as possible by transporting me by ambulance to the radiation facility. I also remember I had a reaction of diarrhea from treatment and an episode of fever. I had thrush a couple of times taking antibiotics to get rid of it. Most of my trouble was probably during treatment and shortly after but the recovery period is slow and long and you have to deal with each problem as you come to it and hope it's the last. This is a long process where they really beat your body up and you are recovering from a beaten-down standpoint. the only way is up you can only get better. Move around an exercise as much as possible it helps even just a little bit each day. Vacuuming and anything I could find to do around the house while the wife was at work helped and it takes your mind off things a bit. I tell you all this stuff not to say I'm tough and got through it but to let you know I had some tough time and got through them and you folks can too. In fact, I felt pretty bad at times and don't really know how I did it. I know it is not easy. I had scriptures I leaned on like the Lord's Prayer and the 23rd psalm and others. I prayed a lot and had folks that were praying for me and trusted in God for strength and help. They told me it would be tough. they told me it was rough treatment. But when I was past it and looked back there was nothing they could have told me that would adequately prepare me for what I went through. I was 58 at the time and I would definitely say it was the toughest thing I ever went through in my entire life. Make no mistake you are in a battle but you will persevere and win. I hope some other folks chip in here but stay strong, deal with each problem as it comes, remember he had a clear scan so the cancer is gone. Now is the continued recovery and you can do it. You folks are on my prayer list as I know you are having a tough time right now but you WILL get through this-Take Care-God Bless-Russ