Hello everyone,

I have not checked in with the group in a while. I have been living one day at a time through my 30 IMRT treatements and my 2 doses of Cisplatin. My last IMRT was Wednesday of this week and my last dose of Cisplatin was April 21st.

The Dr. had me in for hydration yesterday and wants me in for another 2 liters tomorrow. I get all of my nutrition orally as I did not get a feeding tube. Have been living on Skandi shakes and Ensure. (Hold my nose and slam!)

How soon before some of the more egregious side effects dissipate? The last few days I have vomited due to thick mucous. I think I actually feel better today but am not yet certain.

I wanted to take a minute to check in with people that understand. Thanks for being there.



Frank

SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08 (premature resection)
2 additional sub cm nodes
Tx plan at Stanford: 30 x IMRT, 3 x Cisplatin - Started 3/27/08 - Could only complete 2 doses of Cisplatin due to hearing loss.
p16+

Frank, congratulations on completing your treatment!! Seeing that you went through treatment at my alma mater, I know you were in good hands. (I grew up in Redwood City, BTW)

As you peruse the board, you will find a wide variation on experiences. Some get worse for the first 2 weeks or so after treatment. I got better fairly quickly. I also did not have a PEG tube, and just drank lots and lots and lots and lots of water. ;-)

I also forced myself to get outside and get exercise, which helped my appetite. I always had the water bottle with me!

Take it day by day, enjoy the improvements, and don't get too discouraged by any perceived setbacks. Keep posting here as well!!

Hi, Frank, if you continue to have thick mucous problems, you might ask about renting a suction machine for a month or so- if could help clear your mouth and throat before you eat and make that process easier. Since you just finished rad tx., it will take some time[ a month or more] to gradually get over the effects. The most important thing now is to be very vigilant about staying hydrated and getting an aqequate amount of calories. Hooray that you are over this tx. hump!! Amy in the Ozarks

Frank,

I also did not have a peg and it took me about 2 to 3 weeks post Tx to finally walk out of that nasty tunnel. Hang in there, you're soooooo close to the road to recovery. Just one more turn or so.

Frank,
I rinsed my mouth with club soda to help with the mucous. It does get better one day at a time.

Frank

Throughout treatment, lots of mucous and my first two weeks PT everything got worse not better. Even had to suck down nasty VHC instead of Ensure Plus. BUT Seltzer water (in cans, not big bottles so fizz is there) really helped. Just rinse and spit. I went through about 12 cans a day and they still remember me at the Safeway store as I would buy my 60 cans.(too tired to drive to Costco and deal with mob and lines)
It will get better and better. congratulations on finishing treatment

Hi Frank,
Way to go getting through your treatments!
Good Job! Glad to hear your getting help with the hydration, that seems like the key! I swear by Mucinex to help with the mucus, and if you have one, run the humidifier or if not, could keep a pan of water on the stove to help. Plan to sleep and heal for awhile. My dad overcame the mucus at about 3 wks post TX.

Frank:
Great Job on getting through!! The mucous issue is a real drag but you will improve daily. Mine was also so thick it made me throw up and with the throat and mouth the way it was that was a horrible feeling! It will get better, stay hydrated, rinse with whatever works (I used the water, salt, baking soda solution a lot!), and oh yeah, did I say stay hydrated! You'll be fine now. Think positive thoughts and remember, every minute that goes by is another minute you are further along in the healing process.
Regards,
Steve

Today is a hard day. It seems that the sores in my mouth are getting worse. In addition, I have gained about 15 pounds in the last couple of days of water weight. Also, for the last two nights my wife has said that I have had terrible sleep apnea. Did anyone else experience apnea? I assume it is related to all of the mucous etc.

I see the Dr. tomorrow. My plan for the day is to take my allotment of narcotics and get by. Thanks for letting me complain a little. I'll try to be more upbeat on the next post.

Frank,
I know this is a rotten journey but the fact that you are able to complain about it is good. Everyone here has complained about something at some time during their treatment and recovery. With every complaint someone has learned something. Don't worry about being upbeat, when you vent I would suggest that something positive will come from it.
I suffer from sleep apnea and use a CPAP machine. My wife used to complain about my restless loud sleeping. Now she wakes me to make sure I'm still alive. You are blessed to have a partner that looks out for you at all times. Talk to your doctors and mention your wife's concerns about your sleep. I'm sure you will find a solution.
Cheers,
Mike

I am feeling stronger every day. Amen! It has now been 9 days since my last IMRT and I am feeling better and better!

I still find it necessary to get "drugged up" in the morning in order to be able to drink a liter of water and to get my 1st Skandi shake down. What was the experience of others in working towards getting off of the narcotics?

Also, I am finding myself looking longingly at some of my family members dinners but I know it it to soon to start experimenting with real food. What do you guys think?

I am feeling better day by day. My PET CT is scheduled for 8/4/08. I feel like that is the next big thing to be praying for- a clean PET CT post treatment.

I am also starting to have feelings like I want to get back to work but know that I can't with the narcotics and eating issues.

Does anyone have a comment on any of my list of issues/concerns. Would love to hear about your experiences.

Have a great day!

Glad to hear you are feeling stronger. But don't over due it I was also feeling pretty good and then found myself crashing and feeling so tried. Not trying to burst your bubble just pace yourself. It does take time for your body to get back to normal. I have also found that my mind says one thing but my body says something else. I can sit there and thing about everything I need or want to do and then before I know it I wakeup from a nap. Take care !

Frank.

I know you want to recapture your old normal life ASAP but your body has been put through the ringer so to speak. Don't push it while it recovers which may take well over a year or longer. Do try to eat anything you want. You will find some things work and some don't but don't give up trying. It wasn't until 16 months post Tx for me that I finally was happy with my recovery and to some that was a fast recovery.