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#54143 12-10-2003 07:25 AM
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I am 6 weeks out from completing 7 weeks of radiation plus two rounds of high dose cisplatin chemotherapy for SCC of the left tonsil and one lymph node.

I am feeling well and gaining more strength and stamina each day. I feel I am functioning at about 75% of my normal level.

My mouth is still a little sore and I cannot eat anything spicy yet. My taste is about 35% of normal, but returning more each day. I still have a feeding tube, but have not used it for about a week. I can eat quite a few foods now, but not anything acidic or any dry foods like bread or crackers. I have healed very well and for only 6 weeks out have made good progress.

My primary complaint is dry mouth. My radiation was delivered using IMRT and my radiation oncologist says that eventually my saliva function should return to near normal.

Can someone tell me when I can expect my salivary function to return?

Catwoman 3420

#54144 12-10-2003 03:02 PM
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Catwoman, you have made great progress. I also had IMRT/chemo and at 4 mos. was able to lick envelopes. I was jumping up and down excited, and figured that was good enough, but it just continued to get better. I am closing in on 18 mos. post treatment and I would estimate 95-98% of normal salivation. The last taste to return for me was sweet, which would allow me one bite, then no more for quite a while. In the calendar I keep I noted the first time I ate and tasted a jelly donut, and that was at about 5 mos. I still don't do much spicy, but I didn't before. All things taste the same to me as prior to treatment. The name of the game here is PATIENCE. You sound a lot like me when I was pushing really hard for a return to as close to normal as possible. It will happen, thanks to the miracle of IMRT. You and I, Catwoman, and the others who have had that, are beyond lucky. Hang in there, and soon you, too, will be able to spit - not a particulary ladylike activity, but one which I will never again take for granted.

#54145 12-11-2003 06:05 AM
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Hi Catwomen,
I am having pretty much the same experience as Joanna. Salivary function is slooowly returning 9+ months post Tx. I still have dry mouth at night - (the doctors think I may be one of those that sleeps with their mouth open). A humidifier helps a bit. Like you, I had 2 rounds of Cisplatin and the full boatload of radiation for the right tonsil. I still have a little residual soreness, probably from the muscles being fried in my neck - the radiation oncologist warned me about some "texturing" of the muscles. I only notice it when I'm yawning.

It can take 1 1/2 years or more for full salivary function to return. Note that the gland behind the tonsil is probably gone for good so you won't have the same salivary function as before.

I can eat spicy foods and love salsa, no problem. All my taste buds are back now, although I don't like chocolate as much as before. I still don't do well with cookies, breads, chips, etc. Salty foods will exacerbate the problem. I always have a bottle of water handy but I did that before treatment also.

It sounds like you are doing really well for 6 weeks post Tx. I am very grateful I had access to IMRT.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#54146 12-11-2003 01:13 PM
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Thank you for your insightful and thorough responses. I deeply appreciate your help.

Questions about this disease are matters which require answers from people who have walked the path before. The OCF Forum and its membership have been a primary source of information for me throughout treatment and now into recovery. It has proven to be a valuable resource.


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