Radiation starts Oct 17

MJG1

Hi Everyone,

First, I want to thank all the people on this site for sharing experiences and for giving tips and encouragement.  I read many of them and tuck the ideas away.

My husband is half way through his treatment as of this past Monday for Squamous cell carcinoma, P16, base of tongue and tonsil plus 4 lymph nodes.  He has one more Abraxane Chemo treatment on his study and then Radiation with chemo starts.  The chemo will be abraxane every three weeks as it was in the study.  I am frightened for him during the radiation and am looking for all the things that helped each one of you get through the radiation.  I know all cases are different, it's helpful to know when to expect things, what to do, what worked, what didn't.  

One more kicker, my husband is type 2 diabetic and was well controlled with metformin only until chemo and steriods kicked it into high gear.  He has had extremely high glucose counts.  I have heard that radiation can cause the opposite.  Anyone with these experiences??

Thanks and continuel healing and health to all of you.

Margi Greene

CivilMatt

your own procedure is everything

Margi,

Music, Lorazapam, magic mouth wash, drink of water, swish & spit, rub my arms & face, relax and zap.

Matt

yensid683

Adding to Matt's comment

Radiation treatments themselves are fairly simple albiet a bit claustraphobic what with the mask that holds you in place.  Each session should last around 15 minutes, so not all that long, and surprisingly it is painless

Afterwards, it can be challenging in that radiation impacts are cumulative. 

I had 33 radiations treatments, and getting them was a breeze, but the side effects multiplied each day, essentially a gigantic sunburn for all of the throat tissues.

the first week saw some minor soreness and irritation in my throat, I used popsicles as an 'ice pack' type treatment that was fairly effective.  Saliva started to dry up and taste began to fade towards the end of the week.

Week two saw intensification of these side effects and a greater experience with pain and mucos coating all of the irradiated tissues.

Week three saw the need to start prescription pain medication, sense of taste virtually disappeared, swallowing became a challenge and the skin on my neck started to redden.

Weeks 4,5 and 6 saw intensification of all of the above, and by the end of rads it was particularly challenging.

It is manageable though.

My radiation oncologist had me get a feeding tube and it was a life saver.  I could barely swallow water, let along enough calories to keep me going.  One tip on the feeding tube - when you're using it and he feels the need to sneeze or cough, clamp the tube closed as anything that is in the tube will fly out.  A year later I was painting the ceiling in the room where I first used the tube and had the sneeze experience and found a spot of the liquid feed on the ceiling!

It is important that he care for his skin, clear, unscented aloe vera is very beneficial.  I used it all during treatement and had very minor skin burns (similar to a wicked sunburn).  A word of caution, only use it AFTER a treatment, make sure the skin is clean and free of anything before a treatment.

Swallowing will be a challenge but it is critically important that he understand that he could permanently lose the ability to swallow anything if he doesn't swallow something every day.

Hydration is important as well.  Treatments will kill off cancer cells, the body will break these dead cells down and the kidneys will remove the toxins and will need water in order to facilitate filtering out these toxins (chemo too)

Last but not least, talk to him about your concerns.  My wife held it all in and it manifested itself in anger, she needed to vent and wouldn't as she didn't want to burden me any more than I already was. 

Talk to him, let him know that you're there for him, and share how you feel, it will help.

As to the diabetic issues, unfortunately I'll have to defer to others, I have no experience with that.

You can always ask his medical team.

MemphisTn

No Idea About Diabetes

But, as others posted, keep swallowing. I used the magic mouthwash (lidocaine) a couple times before drinking Ensure Plus and it did help to ease the pain enough to sip it through a straw. I have heard good things about the feeding tubes but it was a goal of mine to avoid it. I would speak with your husbands Onc about diabetic versions of nutrition drinks (I think Jevati or something like that is one). Im positive they have treated diabetic patients before, itll be over before you know it. God bless you guys!

Much love,

-PC

MJG1

CivilMatt said:

your own procedure is everything

Margi,

Music, Lorazapam, magic mouth wash, drink of water, swish & spit, rub my arms & face, relax and zap.

Matt

Lorazapam

Matt,

Did the Radiation Oncologist give you the Lorazapam right before treatment?  We have not been given anything to take before hand at this time.  I have a week to get this lined out though.  I frequently read your posts and I have relayed your tips to my husband.  We hear from everyone as this proceeds he must continue to swallow frequently.  

Thanks,

Margi Greene, St. Charles, MO

MJG1

yensid683 said:

Adding to Matt's comment

Radiation treatments themselves are fairly simple albiet a bit claustraphobic what with the mask that holds you in place.  Each session should last around 15 minutes, so not all that long, and surprisingly it is painless

Afterwards, it can be challenging in that radiation impacts are cumulative. 

I had 33 radiations treatments, and getting them was a breeze, but the side effects multiplied each day, essentially a gigantic sunburn for all of the throat tissues.

the first week saw some minor soreness and irritation in my throat, I used popsicles as an 'ice pack' type treatment that was fairly effective.  Saliva started to dry up and taste began to fade towards the end of the week.

Week two saw intensification of these side effects and a greater experience with pain and mucos coating all of the irradiated tissues.

Week three saw the need to start prescription pain medication, sense of taste virtually disappeared, swallowing became a challenge and the skin on my neck started to redden.

Weeks 4,5 and 6 saw intensification of all of the above, and by the end of rads it was particularly challenging.

It is manageable though.

My radiation oncologist had me get a feeding tube and it was a life saver.  I could barely swallow water, let along enough calories to keep me going.  One tip on the feeding tube - when you're using it and he feels the need to sneeze or cough, clamp the tube closed as anything that is in the tube will fly out.  A year later I was painting the ceiling in the room where I first used the tube and had the sneeze experience and found a spot of the liquid feed on the ceiling!

It is important that he care for his skin, clear, unscented aloe vera is very beneficial.  I used it all during treatement and had very minor skin burns (similar to a wicked sunburn).  A word of caution, only use it AFTER a treatment, make sure the skin is clean and free of anything before a treatment.

Swallowing will be a challenge but it is critically important that he understand that he could permanently lose the ability to swallow anything if he doesn't swallow something every day.

Hydration is important as well.  Treatments will kill off cancer cells, the body will break these dead cells down and the kidneys will remove the toxins and will need water in order to facilitate filtering out these toxins (chemo too)

Last but not least, talk to him about your concerns.  My wife held it all in and it manifested itself in anger, she needed to vent and wouldn't as she didn't want to burden me any more than I already was. 

Talk to him, let him know that you're there for him, and share how you feel, it will help.

As to the diabetic issues, unfortunately I'll have to defer to others, I have no experience with that.

You can always ask his medical team.

Swallowing and more

Thanks for the detailed response.  I will call today to figure out what we might plan for regarding the diabetic response to this treatment.  I might add, he was type 2 before this started, but the chemo increased the severity so we're in the learning process.  The Dr. says this will reverse after treatments end.  I've heard aloe plant is the best from some.  The tip to NOt put anything on the neck until AFTER a treatment is helpful.  Thanks!  Your week by week description is very helpful!

Margi Greene, St. Charles, MO

MJG1

MemphisTn said:

No Idea About Diabetes

But, as others posted, keep swallowing. I used the magic mouthwash (lidocaine) a couple times before drinking Ensure Plus and it did help to ease the pain enough to sip it through a straw. I have heard good things about the feeding tubes but it was a goal of mine to avoid it. I would speak with your husbands Onc about diabetic versions of nutrition drinks (I think Jevati or something like that is one). Im positive they have treated diabetic patients before, itll be over before you know it. God bless you guys!

Much love,

-PC

Memphis Tn

Thanks for the encouraging words and helpful hints.  We will be so happy when it is over!!!  

Margi Greene

St. Charles MO