ssc, hpv in tonsils on both sides and eblarged lymph node

Marie, This Scott. I started Radiation and Chemo Last January and finished my 35 rounds and 3 rounds Chemo March 16. I was thinking like you I would put on some extra weight before hand. My normal weight was around 215 I got up to 240. Thinking I would be good. I hand magic swish rinsed every few hours with baking soda and salt. but at some point it just got to where I could not eat or drink anymore. One weekend I lost 10 pounds. The next week I got a peg tube installed to my stomach and it help Tremendously. I lost down to 175 but after the tube was able to maintain weight around 185 until it was removed. I like my eight of 192 now so that is what I am maintaining.

I also have a good fried that just finished treatment 6 weeks ago and he thanks me for telling him tho get the tube early don’t wait.

It was definitely the last couple of weeks. I still had side effects 10 to 12 weeks after. It was probably 14 weeks after that I got the tube removed. Just because you have a peg tube does not mean you can’t eat by mouth.

Marie, br549329 is correct just because you have a feeding tube does not mean you can't eat. The tube is there in case you can't. Or say you can eat but the swallowing is so difficult and the pain so bad it is plain drudgery. Then the feeding tube is your friend and lifesaver.

I would also like to add that you should have a speech therapist assigned to you who helps with all things H&N such as swallowing, breathing, etc., and helps with any problems during and after treatment. They may even give you a swallowing test at some point.

One more thing, the speech therapist should give you swallowing exercises to do because if you use the feeding tube and are not eating for a period of time thus not swallowing they say you can forget how to swallow and will have to relearn it again. I know it sounds odd but that is what my speech therapist told me and it can happen so I did my swallowing exercises as instructed and did not miss at all because I did not want to have to relearn swallowing. I just wanted you to be aware of this.

Take care, God Bless-Russ

Thank you Marie, this treatment is tough but doable and Your husband will triumph. Especially with a devoted supporter like you.

Take care, God Bless-Russ

Hi Marie. Thanks for checking in. Best of luck to your husband starting his treatments. I’m sure he will do great.

I’m heading into week 5 of treatments and I’m feeling okay minus the expected side effects. The loss of my taste buds has just started and honestly that’s the hardest part for me. I wasn’t really prepared for losing all sense of taste. I’ll keep you posted with any upcoming week 5,6 and 7 challenges. It always helped me to hear from other patients and know what to expect. Healing thoughts to your husband and you.

Hello Marie glad to hear from you and glad your preparations are progressing well and are probably as ready as you folks are ever going to be. keep us updated and we can possibly answer questions and help along the way.

Wishing You the Best

Take Care God Bless-Russ

John Wishing You the Best as you get into the latter weeks of treatment and recovery after that. It can be a very challenging time period.

Take Care God Bless-Russ

Good thoughts sent your way. Yes we haven’t even started and I keep thinking about that other side.

There hasn’t been conversation about the type of treatment. I’ll be asking.

Take care Steven