post treatment recovery of side effects

Hi all, my name is Darryl, I am 44 and I was diagnosed with SCC in the tonsil and lymph nodes. I have just completed 7 weeks (35 treatments) of radiation along with 3 treatments of chemo (sysplatin). I completed my treatments 2 weeks ago. I am told that the mucus build up will subside with time, but what I am most worried about it my sence of taste. Will it return? I can't immagine never enjoying food ever again. I know that everyone is different, but what seems to be the average time to expect to see some improvment. Also what are the chances that it won't come back at all?

Hello Darryl, glad to hear you are on the road to recovery.  My experience, although we all are different, 3.5 years out left tonsil, left neck disection, 35 rad treatmets, 7 erbitux as well.  I still have mucous problems, do the netti pod rinses several times a day and my taste, well, not all that good.  I think my smell is so good I IMAGINE the taste from memory.  I have 2 good friends, suffered the same dx, one is 6 years out and the other 11 years out, and their smell is what gets them through.  Taste, well, that is out the window, I believe we eat knowing we need nutrition, otherwise, for me, I've missed meals for forgetting.  Eating, tasting is not that of a high priority to me. I lost 30 lbs and only have gained 9 lbs in all this time.  I want to stay healthy so much I focus on what I can get down that is healthy rather than enjoyment of the food....we all are different.  I've read where eating for most was such a wonderful passtime, guess for me I am so grateful for the alternative and what I can get down is focused on the nutrition of the items!  Guess the radiation, ruined that part for me!  But I do like being at a better weight, looking better and watching my health! 

Good luck to you and all will come in time! God Bless

Patricia

hi Pcn

Can you tell me what to get for my dad in helping him get thru treament a little more comfortable ,.. he will start radiation in 2 days ... he is really worry of all the pain and refuse to get the feeding tube.. i'm just really worry for him ... any suggestion is greatly appreciated thank you so much

Thank you so much for your reply Patricia.

Unfortunatly I am one of those who eating and enjoying food was an important pastime. I feel a bit stunned.

Thanks again, Darryl.

Hi  I went through this i didn't let them put the tube either.  I lost 40 pounds but put it back on after everything healed.  I ate soup and always carried a bottle of water with me.  The last thing that i could taste was grape and tea .  I used the mouth wash alot.  I have no porblems with moucous and i can taste everything as before.  It was somewhat painful but i used the pain meds.  I noticed that my memory still isn't very good as far as remembering time i have insominia and suffer from depression and aniexty.  Oh the water is best at room temp nothing cold i just held my throat as i swallowed.  I go for my 2 year pet scan this month.  God Bless you and Good Luck.  Pray for strength. Johelen

On Nov 03, 2009 12:42 AM DarrylS wrote:

Hi all, my name is Darryl, I am 44 and I was diagnosed with SCC in the tonsil and lymph nodes. I have just completed 7 weeks (35 treatments) of radiation along with 3 treatments of chemo (sysplatin). I completed my treatments 2 weeks ago. I am told that the mucus build up will subside with time, but what I am most worried about it my sence of taste. Will it return? I can't immagine never enjoying food ever again. I know that everyone is different, but what seems to be the average time to expect to see some improvment. Also what are the chances that it won't come back at all?

Hi Darryl.  OUDave in my later 40's with base of tongue cancer and then the same radiation/chemo you went through.  I had mucousitis for about 6 weeks which was tough.  Had to spit all the time and it freaked me out because nobody ever told me of that risk-so hang in there on that-it will go away.  As far as your taste buds, some of it will come back over time but if you are using magic mouthwash for example, that will mess up the taste of everything.  Be patient, ane think of your taste in 3 or 4 month increments-just like your scans.  Some of your taste will come back fast and other taste senses will take time.  I am a year and one-half after my last treatment and I am just tasting and tolerating salt and pepper and some seasoning.   In the grand scheme of things, losing some taste pales in losing allot of other stuff.  So be patient and not frustrated.  Sounds like you are doing pretty good and that is wonderful.  Oudave  

On Nov 03, 2009 1:15 AM pcn17 wrote:

Hello Darryl, glad to hear you are on the road to recovery.  My experience, although we all are different, 3.5 years out left tonsil, left neck disection, 35 rad treatmets, 7 erbitux as well.  I still have mucous problems, do the netti pod rinses several times a day and my taste, well, not all that good.  I think my smell is so good I IMAGINE the taste from memory.  I have 2 good friends, suffered the same dx, one is 6 years out and the other 11 years out, and their smell is what gets them through.  Taste, well, that is out the window, I believe we eat knowing we need nutrition, otherwise, for me, I've missed meals for forgetting.  Eating, tasting is not that of a high priority to me. I lost 30 lbs and only have gained 9 lbs in all this time.  I want to stay healthy so much I focus on what I can get down that is healthy rather than enjoyment of the food....we all are different.  I've read where eating for most was such a wonderful passtime, guess for me I am so grateful for the alternative and what I can get down is focused on the nutrition of the items!  Guess the radiation, ruined that part for me!  But I do like being at a better weight, looking better and watching my health! 

Good luck to you and all will come in time! God Bless

Patricia

 

Hi Pat, Oudave here.  I like your sense of priority and sorry to hear you still are having some mucous problems.  In my 40's, I was happy to lose the weight and now that I have my taste back better and hunger back, I have gained back the 30 pounds I lost going through  a left neck dissection and 35 rads/7 chemos at the James in Col. Ohio.

My question for you:  I am 1.5 years  out from my last radiation, and I still have quite of neck pain on the left side-the side of my left neck dissection and still allot of stiffness.  Do you mind me asking if you still have stiffness or pain and what, if anything, do you do to manage any stiffness or pain that you might have?  Any advise from what you have read of friends or internet friends that have gone through similar issues.

Go OSU Bucks and the Phillies!!!!

OUdave   

Thank You OUDave, that's very reassuring.

I suppose I am being immpatient, but just like everyone else you just get so sick and tired of being sick and just want some normality.

Thanks again for your reply.

Darryl.

On Nov 03, 2009 11:09 PM DarrylS wrote:

Thank You OUDave, that's very reassuring.

I suppose I am being immpatient, but just like everyone else you just get so sick and tired of being sick and just want some normality.

Thanks again for your reply.

Darryl.

Hi D,

A day will come down the road when you least expect it-and you will realize you are normal.  In fact, you are better than normal.  You survives the strongest heat of the fire and now on the road to recovery-kinda like the Sperheroe who doesn't know how to use his new-found powers-that is you.  Kinda like watching paint dry or water drip-eating improvement......so be patient.....be kind and buy an IPOD and ram on music....if you like sports, now is the time to dig into ESPN....you like the outdoors, now is the time to walk.....have kids, cousins, neices and friends find ways to focus on them-move outside yourself....,,,,text them...invite them over to a cookout that you can't eat yet.....measure each success and give yourself a pat on the back whether it be eating 4 spoonfuls of mashed potatoes or scrambled eggs   (what I started on), or taking a walk around the block, or going out to see a friend, or having a friend over......and if you feel depressed or anxious, see a doc for anti-depressants, anti-anxiety, or sleep meds...you gotta sleep...key.....think of it as an athlete who broke his arm or leg...they can't play for six weeks and then slow rehab...you are no different than the pro athlete....and when you do this, you are doing it for all of us......so you will join the ranks of survivors or as I like to say, but-kickers.....OUdave  ps....One day at a time.....Serenity Prayer:  God grant me the Serenity to accept the things I cannot change, the Courage to change the things I can, and the Wisdom to know the difference. 

On Nov 03, 2009 1:45 AM xtinix wrote:

hi Pcn

Can you tell me what to get for my dad in helping him get thru treament a little more comfortable ,.. he will start radiation in 2 days ... he is really worry of all the pain and refuse to get the feeding tube.. i'm just really worry for him ... any suggestion is greatly appreciated thank you so much

He needs a feeding tube now instead of 4-5 weeks into this-I can't stress that enugh.......for radiation, allot of kindness throughout and them when you get to the 4-5 week mark, magic mouthwash and stock up on milk or other fortified drinks....if he gets a feeding tube, you can order special drinks..believe me somewhere in that 3-5 week period you just don't feel like swallowing or eating.....think of the feeding tube as an insurance policy, you may never need it but if you need it you will have it.....again at the 4-5 week time, take magic mouthwash and then maybe get a higher level pain perscribtion like perecet to help him eat////  This Board can give better advise than me.........also, talk NOW to the nutritionist at the hospital so you can prepare for the time he may not be able to eat....at the James in Columbus they are reluctant to even start head and neck radiation without a PEG tube in......keep me posted.....would be glad to throw in my 2 cents....if he is slender they shouldn't start radiation without a feeding tube....Oudave