Our New Journey

PapaPaul said:

side affects of side affect remedies

Hello All! The side affects are really starting to set in. The nausea, dry mouth, mouth sores and burned skin! For the skin I use large amounts of Aloe Vera 100%. For the nausea, nausea pills (not sure of what it's called, my wife handles that for me). Dry mouth, a fresh bottle of water with me 24X7. For the mouth sores magic mouthwash, however this only lasts a few short minutes. The rad nurse gave me some pain patches that work wonders for controlling the pain, but also increases my nausea to the point where the nausea pills don't work. On the bright side, I am now 1/3 the way through tx. Things are going ok, and I seem to be handling things well. My wife continues to be a constant encouragement and source of many blessings. Thanks for the advice on MuGard. I pushed my rad onc a little and he agreed to prescribe it for me. Even my insurance co agreed to pay for it. So things are progressing along. I will let you'all know how it works for me! I wish you all a Happy Valentine's Day and continued success with your's or your loved ones progress!

PapaPaul and Groovy Grammy

It's more of a preventative than a cure, but there's the possibility that the ones you have will heal, the Mugard will keep more from forming.  Also, for your neck...try some Calendula cream....I used the kind for babies, you can find it in the health food store....it's very healing.  I used to put Aloe 99 on my neck, let it dry, the coat it with the Calendula...only once during radiation was my neck actually painful.

Congrats on being 1/3 done....it's all in the count down, isn't it?

p

PapaPaul said:

Dehydration is not good!

Went to take my chemo tx today, after labs were done, and I explained some symptoms I was experiencing to my med onc, was told I was dehydrated and would be receiving re-hydrating txtoday instead of chemo. Needless to say, I was feeling pretty lousy when I first arrived! After a thurough examination by the dr and about 3 hours in the infusion chair, I left feeling really good. In fact probably the best since all this started. The doc said the dehydration was a result of the pain patch I just started using, it was causing some fairly strong nausea. I thought I was drinking plenty of water (and I was except I threw most of it up within minutes).I think I will pay much more attention when I hear the words "Hydration ! Hydration! Hydration" I think each of you have mentioned that to me at least twice, and my wife at least 3 or 4 times daily. Thanks P for the tip on  Calendula for my neck. I will get a hold of some and make sure I use it (I'm allergic to pain).  Again my prayers for and well wishes to each of you as we journey on together!

 

PapaPaul and Groovy Grammy

Hydration tip...

Have your wife or you... slightly pull the loose skin on the back of your hand...

If it goes back to normal fairly quickly, like almost instantly you are probably good on fluids...

If it tents up, staying pulled and tented looking..., ummm Hydration, Hydration, Hydration...

Amazing how fast you can feel better once they run fluids through you isn't it...

But lack of for very long will put you down for the count and a few days in the hospital....

JG

PapaPaul said:

Half Way

Half way through rads today!!!! Side effects have been rough, mouth and throat have been really sore. I was able to get ahold of some mugard and it has helped greatly! Thanks to all who so highly recommended it! The big problem now is the skin on my neck. It has begun to split and peal. Needless to say, it's quite uncomfortable. My rad onc gave me some Radia Gel to put on the burns. This has helped some. I also have a fentanyl patch for the mouth and throat pain that seems to help quite a bit as well. I've Been able to keep my weight up (only lost 1 pound over the last week) this keeps my doctors happy. That's about it for updates on me. I hope each of you are progressing well on your journeys and this finds you all in good spirits. My thoughts and prayers are with you all!

That was a huge marker for me!  Day by day, step by step you're getting closer to the light at the end of the tunnel   I'm delighted to hear too, that the Mugard is working for you.....it sure helped me.....stings tho, huh, when you first put it in your mouth.

You might want to try Calendula cream on your neck, too....you can get it at the health food store.....I bought the kind for babies butts....it's very healing.  There's a presciption cream too, if your neck gets really bad.....Silver-something....John, Matt, and Tim know the name of it.....but it's used for burn victims, and I know Matt and Tim swear by it.

Thanks for the update....we needs those around here...

p

Papa,

Silverdene worked really well for me.  I had really bad burns completely around my neck.  The silverdene took the pain away immediately and now, after 20 days it's almost completely healed.  The challange with this med is getting the old application off so you can apply the new.  Hope this helps some.

Joe Cortney

Dallas, TX

groovygrammy said:

Almost there

10 more days, hon, 10 more days.....I love you and I'm proud of you for your courage and perseverance. 

the next most exciting day was hitting the single digits....that will start on Tues, right?  Then another big WHOO HOO.....the countdown begins.....Oh, how I loved knowing each day was bringing me closer to not having to get dressed and dragged out the door every damn day....

p

PapaPaul said:

Single Digit Midgit

I am officially in the single digits. In the Air Force, when we were counting down to a move or return from deployment and we went under 10 days we were considered "single digit midgits" I know...not really a politically correct term, and if I offended anyone, please accept my sincerest appologies! But I am extremely anxious to get this finished and not have to drag myself down to the cancer center everyday. I am experiencing all the side effects everyone warned me about. Some of them worse than I thought and some not quite so bad. Guess you could say that things are as expected. The only down side was the news I got from my onc team....I've been told I need the feeding tube. The procedure will either be later this week or early next week. Imagine that, only 9 days to go to finish and I have to get the tube. Oh Well, I almost made it, however it is getting harder and harder to swallow anything now. I am barely getting 500 cals per day when I need 2000 +. And... we all know the recovery period lasts well beyond the end of treatment. I trust all is well with each you and appreciate the opportunity to learn the tricks to dealing with this thing and the treatments for cure! Take care and God Bless you all. My prayers go out for each of you daily!

Politically correct or not, you are now officially a single-digit-midget......YEAHHH!!  I like the name, myself...

I finished rads on June 15th, and asked that my tube be removed because I had never really used it.  They said no, not yet.  On the 3rd of July, I started using my tube, and used it almost exclusively until Sept 15th.....just saying, you're going to appreciate it once it's in.  It's a love hate relationship, however.....but so worth having.

Congrats!!

p

PapaPaul said:

Single Digit Midgit

I am officially in the single digits. In the Air Force, when we were counting down to a move or return from deployment and we went under 10 days we were considered "single digit midgits" I know...not really a politically correct term, and if I offended anyone, please accept my sincerest appologies! But I am extremely anxious to get this finished and not have to drag myself down to the cancer center everyday. I am experiencing all the side effects everyone warned me about. Some of them worse than I thought and some not quite so bad. Guess you could say that things are as expected. The only down side was the news I got from my onc team....I've been told I need the feeding tube. The procedure will either be later this week or early next week. Imagine that, only 9 days to go to finish and I have to get the tube. Oh Well, I almost made it, however it is getting harder and harder to swallow anything now. I am barely getting 500 cals per day when I need 2000 +. And... we all know the recovery period lasts well beyond the end of treatment. I trust all is well with each you and appreciate the opportunity to learn the tricks to dealing with this thing and the treatments for cure! Take care and God Bless you all. My prayers go out for each of you daily!

PapaPaul

Do NOT consider getting a feeding tube as a failure.... I became best friends with my feeding tube, and I think I would have starved to  death without it..... what a stupid thing it would be to survive the cancer and the treatments and then to die of starvation..... that was what my doctor told me and it sure made sense.

Only 9 more and then you can concentrate on getting on with your recovery.  The tube will allow you to get the needed calories....and don't forget about protein powder.  You need protein to heal and you can mix the powder in with just water and put it thru the feeding tube.

Even though you will have the tube to use, don't stop trying to swallow....even tiny sips of water will keep the swallowing muscles strong....it's like when you don't want your engine to sieze up....same basic priniciple.  So try small sips of water, ice chips, crushed ice...whatever works.

KEEP UP THE GOOD WORK... you are almost done !!

Skiffin16 said:

Short Timer ~ Fly Boy

Well if you are a single digit midget, you surely must be a short timer also....

As for the PEG, you do what you have to do to get through...

As for swallowing though, is that inclusive of liquids only with liquid meds before hand...?

That's pretty much all I was on for 7 - 8 weeks... Ensure Plus, water and a few sliced peaches to keep the muscles working... Of course that was bewteen a dose of liquid pain meds, and fllowed with a crushed percost in a little water for any pain to follow.

Again, congrats....

You'll be done before you know it... ~John (Jar Head)

 

The feeding tube is not all that bad and can be a life line but continue to keep swallowing. Like everyone else, I was warned about the weeks following tx and mine were not nearly as bad as I had anticipated. I sincerely hope the same for you. You will be looking at the roughest part of this journey in your rearview mirror within a matter of days.

Candi

STL, MO.