Need relief for tongue radiation tx... (Fentanyl lollipops, popcicles?)

cureitall66

Hi Everyone,

Week three is complete today! 4 more to go.. We've had a rough go of it this week. Since he is BOT radiation,(no surgery) his tongue is really tore up. As most of you saw on a previous post, they refuse to put lidocaine in his MM for fear of aspiration to the lungs due to the condition of tongue, I guess. So I feel limited to what to do.

They put him on morphine patches couple days ago. Not getting relief to the mouth area at all. He ate very little yesterday and nothing so far this morning. He does not have a PEG, and I'm sure he will have to give in to it soon.

Ran a fever last night at 101 and called the hospital and believe the plan is to give him antibiotics after rad tx today. Is this common with Chemo? Or a possible infection in the mouth?

So, he's only doing MM and salt/bakins soda rinses. Someone mentioned fentanyl lollipops or popcicles....what are these and how do you get them?

I won't let this cancer think it's winning the battle...I have my Combat Boots on!!! And Skiffin16 (John) is my ROCK right now. Thank you John.

Skiffin16

You Go Girl....
Many have fever during Tx, the few times I ran a mild fever in your range and called in they had me just take Tyenol...of course check with them first on that though.

Hopefully someone will chime in soon wit hthe lollipop information for you...

It's the week-end..time to recoup, recover and get ready for another week down....

Best news for your man, this time next week, he'll be sliding on the downside of the hill....

Best,
John

longtermsurvivor

I dont want to harp on a point
but I am mystified by thenreasoning behind the lack of magic mouthwash. We arent talking about a compound with special risk of aspiration. And we arent talking about any significant volume. As little as a teaspoonful at a time is effective. Unless there is something about this beyond what has been said, I would revisit this again with whomever is treating. And I would require a detailed explanation of a "no" answe,beyond "fear of aspiration."

Pat

cureitall66

longtermsurvivor said:

I dont want to harp on a point
but I am mystified by thenreasoning behind the lack of magic mouthwash. We arent talking about a compound with special risk of aspiration. And we arent talking about any significant volume. As little as a teaspoonful at a time is effective. Unless there is something about this beyond what has been said, I would revisit this again with whomever is treating. And I would require a detailed explanation of a "no" answe,beyond "fear of aspiration."

Pat

Unclear also...
I haven't been at the treatments with him, so getting it second hand from him. Every Monday he meets with a Nurse Practioner after tx to see if he needs anything. I believe she must be the one that corresponds with the ENT (?). He also sees his Rad/Onc dr weekly and he is the one that got the Morphine patches started for him.

I guess I'm lost in this cycle as to who to direct this to. I wish I could be there front line to get some answers, but I have to work. Very frustrating.

I would think that Lidocaine would give him the relief (even if it's little), that he's looking for. We thought about just rubbing some of it in his mouth...but afraid of doing so without asking.

phrannie51

cureitall66 said:

Unclear also...
I haven't been at the treatments with him, so getting it second hand from him. Every Monday he meets with a Nurse Practioner after tx to see if he needs anything. I believe she must be the one that corresponds with the ENT (?). He also sees his Rad/Onc dr weekly and he is the one that got the Morphine patches started for him.

I guess I'm lost in this cycle as to who to direct this to. I wish I could be there front line to get some answers, but I have to work. Very frustrating.

I would think that Lidocaine would give him the relief (even if it's little), that he's looking for. We thought about just rubbing some of it in his mouth...but afraid of doing so without asking.

If ya can't get it from the rad doc....ask for it from the
Oncologist, maybe? The only thing the radiation Doc ever prescribed for me was Nystatin ointment for the corners of my mouth...everything else, for pain, nausea, thrush, everything came from the Oncologist. They seem to be more sensitive to what pain and "sick" is all about...That's where I'd ask about the lolipops, too. I think popcyles will sting like no tomorrow....BUT, somebody on here did get a snow cone machine from Beds,Baths and Beyond...the ice is crushed very fine...and she sucked that for a long time...it was Ingrid, I think.

Criminy, there are plenty of people on here who had BOT surgery, and who used MM with lidocaine without aspiration. I feel so bad for him, tongue pain is no joke.

I'm glad you're thinking about the tube....what a relief it is to know you have a second option than putting anything into a tore up mouth. I asked for my tube to be removed when I finished rads and they refused me....oh thank gawd for that!! I hope he's thinking the same thing...that a tube would be a wonderful alternative.

p

luvofmylif

phrannie51 said:

If ya can't get it from the rad doc....ask for it from the
Oncologist, maybe? The only thing the radiation Doc ever prescribed for me was Nystatin ointment for the corners of my mouth...everything else, for pain, nausea, thrush, everything came from the Oncologist. They seem to be more sensitive to what pain and "sick" is all about...That's where I'd ask about the lolipops, too. I think popcyles will sting like no tomorrow....BUT, somebody on here did get a snow cone machine from Beds,Baths and Beyond...the ice is crushed very fine...and she sucked that for a long time...it was Ingrid, I think.

Criminy, there are plenty of people on here who had BOT surgery, and who used MM with lidocaine without aspiration. I feel so bad for him, tongue pain is no joke.

I'm glad you're thinking about the tube....what a relief it is to know you have a second option than putting anything into a tore up mouth. I asked for my tube to be removed when I finished rads and they refused me....oh thank gawd for that!! I hope he's thinking the same thing...that a tube would be a wonderful alternative.

p

We just completed week 2 and
We just completed week 2 and my husband is not having as severe of side effects "yet" from the radiation, but, he is not having radiation to BOT because he had surgery with clean margins. His radiation is to the right side of the neck. But, I agree with Pat regarding the lidocaine in Magic Mouthwash. After Johns extensive BOT surgery( he was intubated for 3 days post op and had nasogastric feeding tube and complicated hospitalization) ENT doc and residents explained when he started eating/drinking about ten days later that some aspiration in the world of Head/Neck patients is tolerated and not a huge cause of concern unlike other specialties where the word "aspiration" causes great concern. In fact, I know he aspirated because after he got tube out and was taking po fluids he spiked a temp. I took him to the ER and CXR showed some aspiration. Not a large ,just enough that caused him to spike a temp. He was sent home and did well.

As far as your husbands temp is concerned we were told by the oncologist that while he is receiving chemotherapy that we should call for any temp greater then 100.5 as they are concerned about side effects from being immunocompromised. So, I would definitely let your docs know about fever that high.

Good luck to you and hope that your weekend won't be too rough.

Also, I pretty much would demand that they figure out something to help his pain. I can only imagine the agony he is experiencing and know that he should not have to. After all, what if it were them in pain? I just know from having a canker sore in the mouth how painful that can be, so I can only imagine what Head and Neck cancer patients go through. They need to figure out something to help him and quickly. I wouldn't go through the weekend without some kind of help

Joan

Sam999

luvofmylif said:

We just completed week 2 and
We just completed week 2 and my husband is not having as severe of side effects "yet" from the radiation, but, he is not having radiation to BOT because he had surgery with clean margins. His radiation is to the right side of the neck. But, I agree with Pat regarding the lidocaine in Magic Mouthwash. After Johns extensive BOT surgery( he was intubated for 3 days post op and had nasogastric feeding tube and complicated hospitalization) ENT doc and residents explained when he started eating/drinking about ten days later that some aspiration in the world of Head/Neck patients is tolerated and not a huge cause of concern unlike other specialties where the word "aspiration" causes great concern. In fact, I know he aspirated because after he got tube out and was taking po fluids he spiked a temp. I took him to the ER and CXR showed some aspiration. Not a large ,just enough that caused him to spike a temp. He was sent home and did well.

As far as your husbands temp is concerned we were told by the oncologist that while he is receiving chemotherapy that we should call for any temp greater then 100.5 as they are concerned about side effects from being immunocompromised. So, I would definitely let your docs know about fever that high.

Good luck to you and hope that your weekend won't be too rough.

Also, I pretty much would demand that they figure out something to help his pain. I can only imagine the agony he is experiencing and know that he should not have to. After all, what if it were them in pain? I just know from having a canker sore in the mouth how painful that can be, so I can only imagine what Head and Neck cancer patients go through. They need to figure out something to help him and quickly. I wouldn't go through the weekend without some kind of help

Joan

I had tongue cancer and had
I had tongue cancer and had radiation to tongue and neck area. I also had no PEG and survived on MM and pain killers. Thry also gave me 4% concentrated lycodine to apply directly on sores. I am 4 months out of tx and still use 2% lycodine gel at night when i apply flouride.

Unless there is a specific lung condition, lycodine should not be a problem at all.

Also even if you get the PEG put in, he has to drink some liquid by mouth for swallowing muscles to keep working.

You should call and find out more, no need to wait for appt.

Sam

CivilMatt

Pow, bam, zap
Hi cureitall66,

Once my rad and chemo doctors took over my ENT was “out of the picture”. My rad nurses and doctor gave me everything I needed; they feel over themselves they were so helpful. I still have a shelf full of lotions, creams and ointments and plenty of Lidocaine and Magic Mouth Wash. Darn them anyway. On a positive note, John is correct at this time next week he will be on the downhill side. I thought at least with the pain meds he would get some sleep. You both might gain some comfort knowing you are kicking the heck out of the cancer. Finally, use the PEG, that’s what it is there for. No need to keep it pristine.

Best,

Matt

D Lewis

Cris
Please don't wait too long to move on the PEG. I got mine put in right around week three and had no trouble at all. A local guy up here waited a couple more weeks, and by the time he went in, this throat was so bad, they could not intubate him or install the PEG. I think he subsisted on the IV nutrition for the duration.

Deb

D Lewis

longtermsurvivor said:

I dont want to harp on a point
but I am mystified by thenreasoning behind the lack of magic mouthwash. We arent talking about a compound with special risk of aspiration. And we arent talking about any significant volume. As little as a teaspoonful at a time is effective. Unless there is something about this beyond what has been said, I would revisit this again with whomever is treating. And I would require a detailed explanation of a "no" answe,beyond "fear of aspiration."

Pat

I'm curious
if the denial of lidocaine might have more to do with issues associated with previous heart conditions? I know the dentist always warns me that some of the numbing treatments they use will cause my heart to race.

Deb

cureitall66

Emailed the NP on the Oncology Clinic Team today...
He emailed them to let them know that he can now barely get down the 15mg morphine even with a couple sips of water. No food at all. The morphine is a nightmare. He's gagged most of it up. It burned everywhere including his ears and nose.

He can't get down any other meds or liquids and now very hungry and tired. The MM burns and and has been sticking with baking soda/salt water rinses to clear the mucus which has some blood int it, as does the discharge when he blows his nose..blowing the nose is tough to do. At least with the mucus he can hold both his ears closed and get it up. He says he swears to GOD a chunck of his throat is coming up along with the mucus.

He's now begging for a tube and to expedite it soon! I know 6 liters of IV fluids a week is not going to do it.

He says if he could just sit around and not move anything the pain is a 5, any movement, burging, tongue, etc, it goes to a 6. Discharging mucus is a 7, and swallowing own fluids 6-7, and just trying to swallow a pill is an 8, eyes water.

Is this feeling normal with the mucus/chunk of throat coming up feeling normal? What is this mucus from? Normal?

We just finished week 3. I can't imagine how much worse it can get. I'm hoping they can get a feeding tube in somehow. ....Do they have to incubate to get that in? I'm not familiar with this.

Hanging on....barely.

phrannie51

cureitall66 said:

Emailed the NP on the Oncology Clinic Team today...
He emailed them to let them know that he can now barely get down the 15mg morphine even with a couple sips of water. No food at all. The morphine is a nightmare. He's gagged most of it up. It burned everywhere including his ears and nose.

He can't get down any other meds or liquids and now very hungry and tired. The MM burns and and has been sticking with baking soda/salt water rinses to clear the mucus which has some blood int it, as does the discharge when he blows his nose..blowing the nose is tough to do. At least with the mucus he can hold both his ears closed and get it up. He says he swears to GOD a chunck of his throat is coming up along with the mucus.

He's now begging for a tube and to expedite it soon! I know 6 liters of IV fluids a week is not going to do it.

He says if he could just sit around and not move anything the pain is a 5, any movement, burging, tongue, etc, it goes to a 6. Discharging mucus is a 7, and swallowing own fluids 6-7, and just trying to swallow a pill is an 8, eyes water.

Is this feeling normal with the mucus/chunk of throat coming up feeling normal? What is this mucus from? Normal?

We just finished week 3. I can't imagine how much worse it can get. I'm hoping they can get a feeding tube in somehow. ....Do they have to incubate to get that in? I'm not familiar with this.

Hanging on....barely.

Intubate....that is putting a tube down his throat and esphogus
in order to place the PEG tube. And I hope they can do it this coming week...

Rads and chemo dried out my nose, too...and I blew blood out it the whole time I was getting chemo...I've heard some here talk about the "chunk of meat" coming up...and some have actually HAD meat come up. I think it's from the rads buring the inside of the throat, and then sloughing off.

The rads are highly irratating mucous membranes...and the more irritated they are, the more mucous they produce to "protect" themselves...some folks have had copious amounts of mocous...some of us got lucky and had a whole lot less. I've heard Musenex can help that...but if he's having trouble getting down morphine pills, then I don't think this would work for him until he can crush them and put them down the tube.

I know some folks make it without a tube...I don't know how they did it tho...I couldn't have eaten or drank anything for 3 weeks at a time during the last three months of treatment.

p

CivilMatt

cureitall66 said:

Emailed the NP on the Oncology Clinic Team today...
He emailed them to let them know that he can now barely get down the 15mg morphine even with a couple sips of water. No food at all. The morphine is a nightmare. He's gagged most of it up. It burned everywhere including his ears and nose.

He can't get down any other meds or liquids and now very hungry and tired. The MM burns and and has been sticking with baking soda/salt water rinses to clear the mucus which has some blood int it, as does the discharge when he blows his nose..blowing the nose is tough to do. At least with the mucus he can hold both his ears closed and get it up. He says he swears to GOD a chunck of his throat is coming up along with the mucus.

He's now begging for a tube and to expedite it soon! I know 6 liters of IV fluids a week is not going to do it.

He says if he could just sit around and not move anything the pain is a 5, any movement, burging, tongue, etc, it goes to a 6. Discharging mucus is a 7, and swallowing own fluids 6-7, and just trying to swallow a pill is an 8, eyes water.

Is this feeling normal with the mucus/chunk of throat coming up feeling normal? What is this mucus from? Normal?

We just finished week 3. I can't imagine how much worse it can get. I'm hoping they can get a feeding tube in somehow. ....Do they have to incubate to get that in? I'm not familiar with this.

Hanging on....barely.

pain control
Hi cureitall66,

I am sorry I misunderstood; I thought he had a PEG. If he gets one it will make all the hydration, medications and nutrition easier. With such difficult swelling (and swallowing) a PEG is most likely necessary.

My throat felt like there was always something in there I could not clear out (that is likely the swelling). The mucus can be atrocious and seems to be never ending. I use to gag trying to get my throat clear and then move in to dry heaves from trying so hard.

I never had blood in my hacking, gagging or spitting, but can imagine some with trying to clear things out.

If he can get some pain control the rest he can live with. I would think the doctors and nurses are working with him to figure out a solution to the incessant pain.

I went through 2 PEG insertions with one during week 5. It was not fun, but very doable and the second PEG worked great.

I do not know if things will get during the remainder of treatments, but there are likely too be different challenges.

Good luck with the pain control.

Best,

Matt

cureitall66

phrannie51 said:

Intubate....that is putting a tube down his throat and esphogus
in order to place the PEG tube. And I hope they can do it this coming week...

Rads and chemo dried out my nose, too...and I blew blood out it the whole time I was getting chemo...I've heard some here talk about the "chunk of meat" coming up...and some have actually HAD meat come up. I think it's from the rads buring the inside of the throat, and then sloughing off.

The rads are highly irratating mucous membranes...and the more irritated they are, the more mucous they produce to "protect" themselves...some folks have had copious amounts of mocous...some of us got lucky and had a whole lot less. I've heard Musenex can help that...but if he's having trouble getting down morphine pills, then I don't think this would work for him until he can crush them and put them down the tube.

I know some folks make it without a tube...I don't know how they did it tho...I couldn't have eaten or drank anything for 3 weeks at a time during the last three months of treatment.

p

** meant "Intubate"...my spelling error...
I am assuming one is put under moderate sedation .....Concerned about the ability to get that tube down his throat.

hwt

CivilMatt said:

pain control
Hi cureitall66,

I am sorry I misunderstood; I thought he had a PEG. If he gets one it will make all the hydration, medications and nutrition easier. With such difficult swelling (and swallowing) a PEG is most likely necessary.

My throat felt like there was always something in there I could not clear out (that is likely the swelling). The mucus can be atrocious and seems to be never ending. I use to gag trying to get my throat clear and then move in to dry heaves from trying so hard.

I never had blood in my hacking, gagging or spitting, but can imagine some with trying to clear things out.

If he can get some pain control the rest he can live with. I would think the doctors and nurses are working with him to figure out a solution to the incessant pain.

I went through 2 PEG insertions with one during week 5. It was not fun, but very doable and the second PEG worked great.

I do not know if things will get during the remainder of treatments, but there are likely too be different challenges.

Good luck with the pain control.

Best,

Matt

Feeding tube
I got mine while under a twilight drug..if they went down my throat I didn't know it. At some point during tx I too had blood and clots when I blew my nose but that was a short lived side effect of a couple of days for me. Hope things get better real soon.

cureitall66

hwt said:

Feeding tube
I got mine while under a twilight drug..if they went down my throat I didn't know it. At some point during tx I too had blood and clots when I blew my nose but that was a short lived side effect of a couple of days for me. Hope things get better real soon.

HWT.....
Did it seem like a quick procedure to you? He's worried about it.

phrannie51

cureitall66 said:

HWT.....
Did it seem like a quick procedure to you? He's worried about it.

It is a quick procedure.....
From the time they took me to surgery awake, till they brought me back to my room was about 45 minutes...total. The actual procedure takes 20 to 25 minutes...less than it takes to do a port.

p