Hi everyone.I been perusing OCF for six weeks now, and have gotten valuable information to pass along to my friend who just completed 35 IMRT treatments 11 days ago. He still has 10 more weekly Carboplatin treatments to go. He's slowly coming out of the tunnel so frequently discussed here.

He's having difficulty with excess mucus and uses the water, baking soda, and salt mixture. Has trouble especially at night. Thanks David for the Carnation VHC recommendation. He's been using it since week 3. He does have a PEG and hopes to start some very soft foods next week to supplement the Carnation VHC. All things considered he's progressing much the same way as experienced here. Just very, very, slowly.

Here's my question. Did anyone experience blurred vision during treatment? If so please let me know. Also did anyone use a mixture of benedryl and dexamethasone as a gargle to help the excess mucus? Did it help?

Everyone on this site is such an inspiration to me, and I remember you all in my prayers at night. My friend is a member of OCF, but hasn't felt like responding.

Andie
Friend to BOT patient; DX April 6, 2008; Stage 1A with no node involvement or metastesis. TX began May 6, 2008;35 IMRT and weekly Carboplatin. Rad. complete, but more chemo to follow.

My Dr gave me some type of Saline Solution that worked pretty well. As for the dry eyes, read the Forum just above this one. It is discussed there.

I don't remember any vision problems but it does sound like he's doing just as would be expected otherwise. I wanted to eat soooo badly and I could still taste everything in my mind but unfortunately when I started putting those yummy things in my mouth it was disappointing to say the least. I started off with fruit cocktail, mashed potatoes w/ gravy, mac and cheese, and various soups. I kept on drinking the VHC for a little over a year post Tx and it was a life saver because it's so tough to eat when things don't taste at all like your mind says they should and I would eat very small portions because I would just get tired from eating. I went for many months ordering child's portions so I wouldn't waste money or food.

It will get better but the recovery is very very slow and he needs to get mentally prepared to tough this part out just like he did the Tx. A lot of us became unknowingly depressed once the "thrill" of the Tx being over with morphed into the agony of a long recovery and the realization that we may be dry and tasteless for the rest of our lives. For a lot of us those fears don't last past 18 months but that's a long time to have self doubt.

Thanks guys for the info. He had two pretty good days this week, but had a crummy day today. I guess you're right: one good day and then 2 bad. What a roller coaster ride this is going to be! He's already taking Wellbutrin for deprression issues. He's like you David. He ate healthy and did aerobic exercise three days a week. He does walk some, but just doesn't have the stamina for any more. Slowly and with time and patience, this will improve. The Carnation VHC has been a life saver and will continue to be for a long time to come. Have a great 4th of July.

Andie

Post Tx I was as weak as a kitten. I couldn't exert much without having to stop and rest for a few minutes. My strength was also affected. Lifting mildly heavy objects was almost impossible. But like many things that improve during our recovery, these will come back as well. I was 4 months post before I got the courage to get back on my bike, then Tax season hit so I really didn't start exercising seriously until appx 8 months post and I was pleasantly surprised how much I had recovered by then. The rest is history. Unfortunately the recovery didn't erase the year that I grew older waiting to recover!!

Thanks David. His patience has improved over the last 21/2 months. He is going to need this patience now more than ever. Hopefully, he can start posting soon. Right now he doesn't have Internet access at home. When he begins to feel better, he can go to the library to check e-mails and the like. His white blood count has been very low for the last 8 days. He even had to take shots to help bring it up. Will have blood work done on Monday. Naturally, he's staying away from public places as much as possible. Thanks for all your insight and information.

Tell him to watch his TSH levels because a common side effect of the radiation is hypothyroidism which will mimic the weakness felt in early recovery stages. Is is easily treated once diagnosed but will be nasty if left alone.

Thanks David. I'll tell his wife to mention this to the oncologist on Monday. He spoke to his RO about this several weeks ago and he said they would monitor it closely for TSH levels. Did your WBC fall when you were on Cis? His voice is returning, but weak as expected. He hasn't been able to talk for about 3 weeks now. He's on a Fentanyl patch (25mg), and hasn't had any Loritab in 4 days. Slowly but surely he's emerging from the tunnel from hell.

Andie

I don't remember any WBC problems but I assure you I had every other problem thought of. LOL I was appx 3 weeks when I walked out and it's a great feeling.

Andie:

There is a mixture called magic mouthwash that uses a combo of several ingredients including benadryl, lidocaine, and maylox. There are several variations of this. I used it for numbing my mouth and took cold medicine thru my peg for the mucous.

The period of time right after radiation ends is a difficult time. It will seem like there is little or no progress at this point. Kinda like two steps forward and one step back.

Ive had problems throughout my treatment with white blood counts, and done the shots too. Even after 1 year they still have not returned to normal levels for me. I also went thru a period of about 3 weeks where I was unable to talk.

Its a very rough treatment to go thru, your friend is lucky you are there to help. Best of luck, it will get better soon.

Christine