De-intensification Clinical Trial

Congratulations Smitty!

I say that because it sounds like your surgeon thinks you had a good report and I don't think you can give too much credit to anything that can be perceived as good new, particularly at this time of the year.

My raddoc has been watching a slightly swollen lymph node on approximately the same spot on the left side of my neck as the lymph node that was cancerous on the right side of my neck in 2020. They've been watching it for as long as eight months as far as I know.

I know how you feel about being parched all the time. I completed radiation therapy in September of 2021 and am now accustomed to carrying a "water" bottle with me where ever I go. My water bottle is typically full of Crystal Light Sweet Tea (often combined with something like Cherry Whey powder to ensure variety of (hopefully beneficial) taste.

A friend of mine at Toastmasters Internation likes to say, "This too shall pass" and I'm confident his favorite phrase can be applied to the nuisance of you rash and swallowing problems. You're on the right track when you say things like, "I'm grateful I'm not aspirating and can eat. I'll gladly take "with difficulty" over "not at all" for sure." This too shall pass.

I'm confident you'll get good news from the raddoc on the 28th, otherwise, I suspect they would have scheduled you to see them sooner.

I wish you and all of those who read these pages the merriest of Christmases and a new year that far eceeds your expectations, particularly where health is concerned. As Tiny Tim said,

"God bless us everyone."

Hello Smitty and thanks for another update.

I have read on here many times that when people get their first scan after treatment the doctors see something they are not quite sure of with different names and in your case called residual, ill-defined, etc.

When these are seen they later on turn out to be nothing or on a scan down the road it is gone and not seen.

People say these are referred to as "false positives" and turn out to be nothing except some still cookin area from radiation or a cause that is unknown and I am figuring that is what the doctors are seeing in your case but I understand it is concerning. ( Pray On It )

I have; also seen on here that people say they should not give PET scans too early and wait at least 6 months for a PET scan because of the possibility of "false positives".

It seems the way this rash is hanging on it may well be the mediport causing it.

Other than that it sounds like a normal H&N slow recovery over time as far as taste and saliva and eating and swallowing. The fact that you are swallowing now though with some difficulty to me is a very good sign and it will just keep getting better. As far as taste and saliva and maybe a few other things it will just take time to see how much comes back, hopefully, 100% but generally once going through this treatment I have found nobody gets away free there is always some little thing that is just different from before and people learn to deal with it.

Afterwhile down the road on this exciting journey, you will figure out what is your new normal or as it is stated on here sometimes your new abinormal.

Christmas Blessings to you also Smitty

Take care, God Bless

Russ

Happy New Year to you Smitty and praying for much recovery for you in the New Year. Glad to hear the mediport is coming out, that is a step forward. I am 2 months post treatment and share your eating experience even though I didn't have a feeding tube: slimey Superfund-site mouth, no appetite, and living on 2 very high calorie Boosts and half a gallon of whole milk per day plus whatever else I can choke down :-) If you can get the very high calorie Boosts down (8 oz) they should help weight because they are 500 calories each. God bless and keep the faith.

Russ, thanks for your continued words of encouragement, you are doing the Lord's work for a lot of people who are at different levels of suffering and speaking for all of us I can say the example you set and your advice are most appreciated.

Hello, Smitty, good to hear from you again.

Sorry, your sweetheart is in the hospital and yes we hope she gets home today-prayers for both of you.

But so sorry you are in a situation of needing to get off the tube and just eat and it is so difficult and painful. This is the first time I can say I heard the term and condition of tethering with an H&N patient. I would have thought possibly they would possibly push you to split your dependence between the tube and eating. But I defer to the pros, if your speech therapist has identified your condition in this way then as you say soldier on and do the best you can, and hopefully at some point here you will reach a breakpoint where it all starts getting better. The good thing is your feeding tube is there just in case. Also stomach pains and the rash returning, you have your hands full. Sometimes going through H&N treatment is just that and it is all you can do, your time is filled with it. I remember a number of years ago reading a thread on here of someone talking of their full-time job and going through H&N treatment and someone commented that the treatment is now your full-time job. Some, just a few have kept working through this but I know in my case there was no way I could have.

I know what you mean about the size of Hershey Medical I was there a couple of times, once for 36 days and it is a large facility. Certainly not the biggest in relation to what is considered the largest of hospitals but it is big to me and you. Here is a link to some stats on it, it does have 12,000+ total staff.

Smitty, you are having one of the toughest times I can remember of but trust me you will still get through this and things will start heading towards the better side soon. Hopefully, you and your sweetheart will be back in good shape and enjoying life again. Here is wishing you better days ahead and God's Blessings be with you.

Wishing You The Best-Take Care, God Bless

Russ

Sometimes you just gotta hold on till the next day, hour, minute...

"I Held On"

Hello, Smitty, and thanks for stopping by and giving us an update.

I would say you are the first person I have known of to go under sedation and have a medical procedure to remove a feeding tube, usually, they just pull them out. I have had three of them and they were all removed by just pulling them out. That's ok if it was done that way as long as it was safely removed is all that matters. Possibly this doctor had a problem with some of them and wasn't taking any chances. So now you don't have your friend the dangler anymore, great.

OK, first off in the second part of your update, I believe you had surgery and that could be adding to your general overall pain in opening your mouth, the first bite pain, gums, etc. along with the other treatment you received. I had a neck dissection on the left side of my neck and since then I get what feels like a sore spot while chewing at my back molars on that side on my gum, and cheek area. It feels like when you get an ulcer in your mouth and every time I would be chewing it was sore and irritating. It may last several weeks or more then fade away. The first time this happened I got an appointment with my ENT to have it checked out because we H&N people are always wary of cancer now. He looked in my mouth and said there is no irritation showing, everything looks fine and normal and he could feel no abnormalities and any following scans have been clear. This was verified by a dentist appointment I had shortly after and my dentist agreed all the inside of my mouth tissue looks normal with no signs of any problems and he could neither feel anything out of the ordinary either. So what my ENT told me was that the operation I had probably affected nerves in the area so this area is signaling my brain from affected nerves it is sore when there is in fact nothing going on. I tell you this long drawn out story to say you may have some nerve effect going on and hopefully over time it will resolve itself for you or you can mention it to your doctor and see if they would be under the opinion if there is a possibility of a nerve effect going on here.

The good thing is you can eat almost anything again and you have adapted ways with your situation to do it. One thing for sure with this H&N stuff you have to be flexible and adaptable. Your saliva is improving, you think and your throat will definitely be sore from the procedure you had. I remember getting dilations and my throat was mildly sore for several days thereafter.

As far as a TheraBite goes I looked them up and they are still extremely expensive $624.00 on Amazon from Atos Medical. The price has always been prohibitive for many people and few insurance companies will cover this. It is also expensive in the situations that most people use them to get past post-treatment issues and then the lay in a drawer unused. I have no idea why the price to this day remains so high considering they are made of plastic and I assume are easily produced. You can find them cheaper on eBay new ans sometimes used. I have another solution if you would like to try is and it is much less expensive and I have found a lot of nurse navigators and speech therapists offer this to their patients because not everybody can afford a TheraBite. It is done using stacked wooden tongue depressors or wooden spoons like you would get with an ice cream cup and fitting them for your mouth opening for as far as you can open it and adding one more which starts increasing your mouth opening over time. You can probably get these locally at say a Walmart or a pharmacy or purchase them online from eBay, I just checked and you can get 100 for between $6.00 and $10.00 with free shipping. I am posting a 6-minute video below to explain how it's done...

TMJ Range of Motion using Bite Sticks

And here below I am posting one of his longer detailed videos (17 minutes) explaining TMJ (Temporo-Mandibular Joint) dysfunction...

I hope the removal of the feeding tube calms down the rash that has been plaguing you, I imagine you could be having a reaction to the material it was made of. So we are glad you are making progress and spring will surely liven things up and renew your spirit. Nothing better than seeing God's creation renew every spring with new life and great hopes.

I celebrate with you for the removal of the feeding tube and you improvements...

Wishing You the Best

Take care, God Bless

Russ