Only 9 treatments So far

LiseA,

My doctor said my “mouth was ablaze”.  For throat, tongue and mouth discomfort I used Magic Mouth Wash very successfully.  I went through 6 bottles swished and swallowed every drop of it.

The soda rinse was constant.

I also had Lidocine HCL OS 2% for sore spots.

Just take it one day at a  time, keep your  team informed on all changes (they have ways to help).  Don’t be afraid of pain meds, this is tough enough.

Matt

LiseA said:

I'll try to remember the "one

I'll try to remember the "one day at a time" as I go along. I can't imagine what sort of treatment was used 20 years ago!

Steve, it's been so helpful following you.  I hope that I can also be there for those unfortunate enough to be going through cancer treatment to head & neck.

This group has been a Godsend.  Thanks all for your continued feedback and support. Means the world to me.

Right around where you are at now, my mouth blew up.  I had burns on my tongue and mouth filled with sores.  I had trouble eating and swallowing from the early stages.  Get magic mouthwash.  Also, get the pain meds even if you don't use them.  They are always nice to have when you do need them.  My problems always seemed to get worse on the weekend when you can't reach the doctors.  I wish I could say its gets better but that is not always the case.  Mine got bad early and pretty much stayed the same throughout and after the treatment.  Its manageable, but just talk to your nurses they will give you the appropriate guildance.  Good luck and hang in there.  I am 5 months out of treatment and feel great.  This will end.  Hang in there.

I have no idea if this will help in anyway. Glutamine was very helpful for me. I would also swish and spit immediatly after radiation some tumeric juice. When I was entering my 4th week I had times when I would start weeping with tears coming down my cheeks. Not the "why me" type just a quiet sadness that made my heart ache. During the day when I had a schedule it was "groundhog day". Juicing, radiation, juicing, formula, supplements, juicing, rest, juice, and throw in the occasional chemo treatment. That kept my mind occupied, it was at night (I live by myself) that it would creep up on me. It would only last a short time and I would feel a sense of relief after. No matter how positive you are or how much you say the acclamations you will have moments and its ok. It did seem like it wouldn't end and that my every waking moment was devoted to cancer, researching for answers and wondering if this is going to work. I have been done for 3 months and it seems so distant now. But I will never forget and I continue to do many if not all of the things I did while go through treatment just not on such a high level. It will pass but it may not seem like it now.

I don't live alone and I cannot imagine. Have had plenty of those moments where tears rolled down my cheeks because of too much time to think. Thank you for sharing raddude. Like I said before it does help to know you all are here. 

I am doing much better than before. I was admitted for the last two days of treatment and the weekend because I was losing too much weight, vomitting, and pain. From the second week on it got progressively worse for me. The IV fluid along with pain meds helped. 

I can't say enough, keep eating as much as you can through radiation. I'm vegetarian and my intake, due to the pain of swallowing and burning from my tongue, obviously wasn't enough.

I am still on liquids but the mucosis has gotten better and that helps.im nearly two weeks out of radiation and I'm holding just under 70 kg down from 90. 

The process has been a challenge but finally I'm flying home this Saturday morning and will be in Maryland soon. I do miss home.

Thank you so much for asking!

Take care everyone. 

16 hours mumbai to New Jersey but I have a layover in Frankfurt. I am worried about trip but I have my dry oatmeal to save the day.   

After going through the surgery and radiation I can handle anything. Ha ha

So glad to hear that you are coming home.  You are doing great on holding the line at weight loss, too.  I think being home will make a world of difference mentally...really will pick you up.  Let us know how the flight and your return goes.  Blessings.