De-intensification Clinical Trial

LeeB3

Hang in there Smitty,

I wish I got feeding tube. I am 127lbs /5 10. I have a lot to put on and I feel weak. My taste is only salt. Try to take as many calories as you can now. It a serious math game.

Lee

SmittyNo1

So, the mask was much better for the 1st of 2 zappings today. Don't know if the strategic haircut fixed it or if they finally found the right "Smith" mask to use, but whatever it went ok.

Had 1st meeting with PT folks today, which was mostly filling out the exact same forms one fills out every single time (grrrrr...) at every single health care provider. If only there were some electronic device that one could input records once and then have them for all of time. Sigh.

I digress. So this PT person(s) is going to help me manage the negative consequences of the TORS surgery, neck dissection and radiation treatments. If I understand it correctly this will be mostly shaming me into doing a lot of exercises.

Well, on to the 2nd zapping. Wednesdays are double masking excitement.

Peace All,

Smitty

wbcgaruss

Hi, Smitty, Thanks for fitting us into your busy schedule between zappings, so glad for you that it was comfortably successful.

Congrats, Smitty, you have now completed your professional form filler course and are one of us.

I think you will find physical therapy helpful for some of the side effects you will encounter from treatment. You will know personally which ones you should and may want to keep doing. I had lymphedema like a lot of folks due to treatment and physical Therapy helped that a lot. There are a lot of things it will resolve and we just get away from doing the exercises after while and why not we are working on something that is not an issue anymore.

Good luck on the DME

Take Care, May God Bless & Watch Over You

Russ

SmittyNo1

Ok, so 2 zapping Wednesday is followed by my favorite... Chemo Thursday. Feeling pretty rotten but still taking in air. Rad doc thinks it's going well so that's good. He's expecting my throat to get sore but I'm not going down without a fight. Besides, after the radical tonsillectomies I'm kind of a professional when it comes to enduring a sore throat. It's hard to imagine it could be worse than having the back of my throat ripped out. That took 30 days + before I stopped taking oxy. But we shall see.

The really good news is - 10 days of treatment to go! 2 weeks counting the weekends!

For now though, back to feeling rotten until this chemo eases up a bit. Hydrate, hydrate, hydrate!

Peace All, Smitty

wbcgaruss

Thanks for the update, Smitty. I am taking Chemo-Thursday as a pun because I don't know of anyone who had a favorite chemo or a favorite day for it. If your chemo sessions are anything like mine they are fairly long. Not fun.

Sorry, you are not feeling well but at least your doctor says you are doing good. Your tonsilectomies were a long recovery. They say having them out as an adult is really tough. I hope you feel better I found it was an up-and-down affair during treatment then post-treatment you just feel really lousy for a while.

Congrats on your progress-Wishing You The Best-Take Care, God Bless Russ

SmittyNo1

Ouch. I have felt horrible all weekend. I finally took one of the nausea meds hoping it would make me feel better. We will see. I don't think anything could make me feel worse (except more chemo and rads, sigh).

Another issue is the tightness around my neck. The neck dissection scar ends at my adam's apple and I think the radiation is shrinking the scar tissue. It feels like a rope around my neck. I'm assuming this won't actually do me in, but if I don't post for a while you know what happened.

I can't believe I'm only 1/2 way. Any advice about the meds or throat would be great.

Peace, not-so-hot-feeling Smitty

wbcgaruss

Well, Smitty, unfortunately, this treatment can and does make you feel pretty crappy. So you go from feeling good before treatment to feeling not so good and then slowly climb the hill back to feeling well after treatment.

I just want to warn you, to prepare yourself, since you are only halfway through your effects from this treatment are going to get worse. My care team told me many times it is going to be tough treatment and recovery and I took them seriously but nothing could have prepared me for the reality of it. Experiencing it and my thoughts afterward was it was the toughest thing I had done in my life. It may not be as bad for you because you are on a reduced program at 4 weeks. I am not sure of my dose of rads but I had throat cancer and had the 7 weeks of radiation. Also when you get to the end of treatment the effects of the radiation hang on for another 2 weeks or more. Many have described it as still cookin from the radiation. Then it can be up to 8 weeks till you start feeling improvement. These numbers are not in stone because everyone and every case is different.

https://www.cancer.org/cancer/managing-cancer/treatment-types/radiation/effects-on-different-parts-of-body.html

As far as your neck goes, it is just the effect of radiation making things feel tight around the neck. I can't imagine this would choke you I think it is just a feeling of tightness. You may want to run this by the care team to see if there is a topical creme or something to relieve this somewhat. I am guessing it may be something you will need to tolerate and get somewhat used to.

As far as meds during this, don't hold back. Pain meds, nausea meds, anything that will make you feel better take them, and don't be shy about it. This is a tough situation and anything you can take to relieve the effects, do it. Don't hold back, in fact, if you have regular nausea or pain just get on a schedule say taking the meds you need every 4 or 6 hours on a schedule keeps you feeling better. Don't wait till you have unbearable pain or nausea to take meds, stay ahead of it. This is to get you through a tough time and later you can ease back and slowly get off any meds you are taking. You will be glad you did.

I hope some of this helps, Take Care, God Bless Russ

SmittyNo1

Thanks for the encouragement Russ.

So, the conclusion of the good people at the Hillman Cancer Center is that I should take the Ativan over the weekend as well as each rad day. They don't think the way I was feeling has anything to do with nausea (neither do I, the nausea meds didn't do anything). They are convinced it's an anxiety issue compounded slightly by mild Ativan withdrawal symptoms. Ativan does have some anti-nausea properties as well. So, we shall see next weekend after the next round of poison. One of the nurses told me during the last infusion that they have to almost kill us to save us. That's what it feels like sometimes, for sure. 

All the nurses, docs, everyone that does what these people do are superheroes in my book. I got to do a lot of cool things in my life, but nothing compared to these folks literally saving my life and many, many others. What an amazing thing to be able say about someone. Very beautiful people.

So, feeling ok today after the day's dose of Ativan. Got zappified, 10 more to go.

Peace everyone, Smitty

SmittyNo1

Hello All. Just finished the last Friday zapping! 4 more days to go. Zap Monday, Zap Tuesday, 2 Zaps Wednesday, and Zap on Chemo Thursday. Then done.

I might be nothing but a bucket of ashes by then, but I'll be done.

Feeling very fatigued, and this muck in my mouth is awful. Also asked the nurses again this morning about the neck tightness. This dissection scar has become like a rope around my neck despite the Aquafor and massages. It would be a heck of a thing to make it this far and expire from the radiation machine turning me into a Pez dispenser.

I'll be so glad when they stop doing things to me and maybe I can start to heal.

Peace, Smitty

wbcgaruss

Dear Smitty, you are getting into some of the tougher territory and are really feeling the effects, I understand where you are at. Just remember you can do this and you will find that you are able to do more than you imagine. Use baking soda and salt rinse on the muck in your mouth as often as necessary. Keep ahead of it spit and rinse, it will be with you a while. The dissection scar I understand is troubling but should not harm you but is terribly difficult to deal with. I imagine this will fade away after treatment but right now it is something to endure. So thankful only 4 more days and like the rest of us you will be so glad when it's over. Salt mix recipes below--

Wishing You The Best

Take Care, God Bless Russ

For the salt/baking soda mixes.

Rinse as often or as little as needed to deal with thick saliva even the stringy stuff.

The trick is to stay ahead of it as best you can.

There are no easy solutions but this will eventually quit.

You may find it beneficial to sleep in a recliner to keep the thick stuff out of your throat and airway.

Laying down directs it to the back of your mouth/throat area.

Even in a recliner I would wake up at times with my air cut off and had to work at getting it cleared out.

Wishing You The Best-Take Care-God Bless-Russ

Mouth Rinse Recipes to Use During Chemotherapy

Soda and Salt Mouth Rinse

1/4 teaspoon baking soda

1/8 teaspoon salt

1 cup of warm water

Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.

Soda Mouth Rinse: A Good Rinse for Before You Eat

1 teaspoon baking soda

1 cup of warm water

Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture.

Saltwater Mouth Rinse

1/4 teaspoon salt

1 cup of warm water

Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt.

Salt and Soda Rinse for Gummy Mouth

Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."

1/2 teaspoon salt

2 tablespoons baking soda

4 cups of warm water

This rinse will help to neutralize the acid in your mouth and will help dissolve or loosen thick, gummy saliva. Don't drink it, just rinse and spit it out.

Peroxide Rinse for Crusted Sores

If your mouth sores are crusting over, it's important to allow the natural healing process in your body to continue, so a peroxide rinse should be used for no more than two days consecutively.

1 cup hydrogen peroxide

1 cup water or

1 cup salt water (1 teaspoon of salt in 4 cups of water)

If you have crusty mouth sores, try using this rinse three or four times a day for two days. Don't use it for more than two days at a time, because it could prevent mucositis from healing.

Use a non-peroxide rinse for two days, before returning to this mixture.

SmittyNo1

Thank you Russ, you are a God-send.

Ugh. This stringy, sticky, goopy, saliva is maddening. Constant swishing and spitting, it's almost too thick to swallow. Miserable. The crap won't even go down the sink drain on it's own, it just sits there looking nasty and growling at me. I'm sure the waste treatment plant down the road is wondering what the hell happened.

Sleeping is almost impossible too. Flopping around like a fish all night because I just don't feel good. Very difficult to get comfortable in any position.

Well, tomorrow starts the final 4 days. Then what's left of me (probably ashes and spit) can start the final cook off and begin to heal.

Peace, Spittin' Smitty

wbcgaruss

Agreed Smitty, awful stuff to deal with. I kept a waste can by my chair with a plastic liner in it and rolled up some balls of newspaper so spitting it in there helped soak it a bit. I also cut paper towels in quarters and they were the right size for the thick saliva and many other small spills and uses. It is too thick to swallow, it will choke you. I woke up a couple times where it had gathered at the back of my throat and cut my air off and I had to do some work to clear it. Sleeping is difficult and nothing is enjoyable about this. Prayers your way that your final four days goes easily and quickly.

Take Care, God Bless

Russ

LeeB3

Dear Smitty,

By now I hope things have Improved. My nose does not drip like an old faucet and my flem is thinner. Sores and throat aren’t much better than last day of treatment. I find Vega and Orgain easy to pour down. I add some grape seed oil for and sugar calories. I also enjoy the Boltfarm Chai it has a lot of calories too and a nutmeg taste while everything else tastes like sat or dirt.

take care,

Lee

SmittyNo1

Thanks for the encouragement everyone!

So, today is the 2 zap day, 1 down, 1 to go. And tomorrow is...

THE LAST DAY!

with 1 last spin in the microwave and one last poisoning. 

I feel like I've been riding some kind of Spanish Inquisition ride at Hershey Park for the last 30 days. I'm sure it was the inspiration for the mask.

But soon...

Peace All, Smitty

wbcgaruss

WoW, Smitty, tomorrow is the last day, hallelujah!

It is like being on a rough ride for an extended period like a funhouse ride that doesn't let up. But it soon will, tomorrow, and then you can start into post-treatment and recovery. Just to remind you the radiation keeps having an effect on you for a couple of weeks once they stop applying it so recovery starts more so after the radiation winds down in a couple of weeks but yours may be different and less time considering you are on a deintensification trial. Ask your rad techs tomorrow.

At times it seems they do practically kill you to save you.

One more day-Wishing You The Best-Take Care, God Bless Russ

SmittyNo1

OK. So you all were not kidding about the worst being after the treatments are over. Wow. I have felt like crap. My mouth is this weird combination of stringy mucous and dried out. It's not pleasant at all. I've got minor burns on both sides of my neck that I keep drenched in Aquafor (which really helps... a must have!). I've developed some weirdo squirrel mange rash on my back and butt cheeks. The docs basically say "strange things happen sometimes, try not to scratch all your skin off. Here's a prescription for an ointment that will help but these rashes can take a long time to go away." Oh well, itchy butt cheeks for cancer-free is still a good deal, even if it's harder for everyone else in public to appreciate. The absolute worst - constipation has returned. So I'm back to taking everything on the shelf to fight it off. Sigh.

So I finished treatments last Thursday. I really do feel like crap but gotta admit that each day seems a tiny bit better in some small way. Fatigue, yes. Losing beard hair, yes. (It's not actually lost, it's in the sink drain). Gagging with mucus, yes. No real saliva, yes. Unidentifiable squirrel mange, yes. Plugged up, yes. Neck skin turning into pork rind, yes.

But weirdly enough, no sore throat. The rad doc said I would have a sore throat for 10 days. My TORS surgeon said I would have the worst sore throat ever recorded in history, with actual flames visible when I looked in my mouth. Go figure. 

So I'm in the cook-off and simmering stage, but still kicking. Peace All - Smitty

wbcgaruss

Well, right on Smitty now you know what it's like first hand not just the stories you read beforehand. Sorry you feel so bad but as you say each day there is this tiny bit of improvement, this little bright shining through. Your body is going through a major assault so many things happen, some kind of unusual.

So that's it, throw everything at it you can to give yourself comfort. A couple, or four more weeks roll by and I think you will realize a pretty big difference.

So glad you made it, hang in there, and the best is yet to come.

NEGU (Never Ever Give Up)

Take care, God Bless

Russ

SmittyNo1

Thanks all for the feedback and good vibes. I'm actually feeling ok except for this rotten mouth. Not much pain but a mucky, goopy, mess or dry as the Sahara (and I've been there... very dry). Don't have a lot of energy, but it seems a tiny bit better day-by-day. Next week I've upped the PT visits to 2 / week.

The other bothersome issue is this damn squirrel mange rash I've acquired. After a follow up visit with the doc, he has me going to a dermatologist. So we'll see. Those appointments don't happen quick, so maybe someday I'll find out what it is. For now, Benadryl cream, steroid cream, hydrocortisone cream, and a number of other anti-itch goops cover my body. I don't really need this misery right now, but it is what it is.

So it definitely seems that the side effects so far have been much less traumatic than those that people have endured with longer treatments, which is obvious I guess. The next milestones are 1. getting my swallowing straightened out and ditching this damn feeding tube (though I am glad I had it, especially after the surgery), and 2. getting a clean scan (NED).

Peace, itchy Smitty

wbcgaruss

Hello, Smitty, thanks for another update.

Yes, the mouth is certainly a main difficulty in this procedure. Glad you are able to increase your PT visits. Energy will come back, just a slow process.

The rash you have I believe may be related to your chemo, look up the chemo you had and check the side effects. I did find some good info on it, check this page out and see if you can find any answers there--

https://www.webmd.com/cancer/remedies-chemo-rash

Hopefully all the creams you are using hold off the itching till you get through it. It must be the same all over for dermatologists, it takes a long time to get an appointment here too.

Seems you are right, your effects are certainly bothersome but not as bad as some but still, you are going through a very difficult treatment and you are weathering it well. Once the swelling goes down from the radiation your swallowing should be able to start improving then.

Hang in there Smitty you are on the recovery road now.

Wishing You The Best

Take Care, God Bless

Russ

SmittyNo1

Hello All,

Time for an update. Today I'm 4 weeks out from my last rad/chemo treatment. Wow - hard to believe! So the side effects are definitely diminishing. Mucous not so bad. Mouth is still pretty dry though. Swallowing has been improving slowly.

Other things...

Rash - got in to see a dermatologist. He said it's eczema, and he doubted that the chemo caused it but said he could be wrong. Anyway, he prescribed Clobetasol, a cream steroid, and it has been great. After one week it's really clearing up. I see him next week to follow up. Weird that there is no cause known though. I never had anything like this before.

Was in the Hershey Med Center ER again yesterday. Started getting terrific stomach pain when I did feedings through the feeding tube. And I mean terrific pain. So they did a CT and found nothing. The overall conclusion was that I was putting too much in at a time. I had increased the amount of water with the "food" because the rad treatment made it difficult to drink much normally, and apparently my belly didn't like the idea of 750ml or so suddenly showing up unannounced. It was amazingly painful. So if you're tube feeding, keep the total at any one time to ~300ml. Do water separately. Less volume, more often. So far, a few feedings in, all is good.

My 1st PET scan will be scheduled in Dec. I am anxious for that. The clinical study requires them every 6 months thereafter.

So my swallowing has been improving. I see the speech therapist again on the 30th. There may be another swallow study in my future. I'm obviously very anxious to get some food going again. Any feedback about this from anyone would be appreciated. The TORS and neck dissection really messed up my swallowing, but I had my mouth opening well and was at least doing soft, pureed foods. Then the radiation screwed it all up again. So the exercises continue and it seems to been sloooowwwwwly improving. Thoughts?

Peace All, Smitty