How long will this pain last??

Ruben and Jude · July 2013

I am 3 weeks post chemo and radiation. The pain when I swallow is excrutiating, so I use my G-Tube for nutrition. I swallow little bits of water or tea, but that's all I am willing to do for now. I rarely take my tylenol 3 for pain, because I don't like the way I feel on the meds, and it constipates me. I do feel less pain when I take it though!

What I want to know is how long does the pain with swallowing usually last?? I know everyone is different, so I'd like to hear what your experience was/is. At least I'll have an idea, and then maybe will be more willing to take the pain meds, or not.

Thanks for your input.

Ruben (and Jude)

CivilMatt · July 2013

take the pain meds

Ruben & Jude,

Provided your doctor sees no problems, I would take the Tylenol if it helps with the pain. Additionally, take something for the constipation. If there is no legitimate reason for not taking the pain meds I would not think twice about using them. This should be a temporary condition (throat pain) and you should start to feel some relief soon. There is a time to be a tough guy, but this is not one of them. Provided this is normal healing, anything (reasonable) to aid in swallowing is ok. I went through a 6-pack of magic mouth wash, but when the pain quit I stopped using it.

Time moves slow during the first few months post treatments, but it does get better.

Hang in there,

Matt

fishmanpa · July 2013

Pain in the......

Hi Ruben,

I'm 9 weeks post Tx and still have pain. My throat is fine but I still have pain on my tongue (sensitive/burning) as well as body aches (like the flu), neck pain (from the surgery) etc. Magic Mouthwash takes care of my mouth and narcs take care of the rest.

My throat pain subsided at around 3-4 weeks but mouth pain has been persistent. Last scope (June 24th) showed me still healing. My ENT/Surgeon said it could be up to 3 months before I heal to the point of no pain. Fatigue and body aches could persist for up to a year.

There's no reason to be in pain. If you have meds, take them! I know they can make you a bit high but it's legal Heck, depending on what state you live in, there are herbal remedies that are legal and work better than anything I've ever tried

One of the things I learned was to stay ahead of pain and nausea. If I feel the slightest bit queasy, I'm taking an anti-nausea drug. I take pain meds regardless if I'm in pain or not. I've reduced the quantity and dosage but I still take them. It's much better than hurting and waiting for the meds to kick in.

It was a solid 4 weeks before I was able to eat soft foods. Now at 9 weeks, I'm doing better but I'm still a long way off from any assemblance of normal. Still on soft foods. I can do fish and very soft meats (with a lot of water). Patience Ruben, it will come, albeit slow. In the mean time don't suffer.

"T"

HobbsDoggy · July 2013

I Didn't Take My Pain Meds At First

Like you I resisted taking pain medication. My son said take these or stop complaining, harsh, but he was right. They helped me get though. If that ones you have make you feel strange ask the doc for differents ones. There are all types out there, some work better than others for different people. The intense pain did not last that long, a few weeks. The residual pain lasted for about a month after the treatment stopped, but that was off and on. The pain medication helped me keep eating some solid or semi solid foods. Still had to use the tube, but it worked out OK.

Hondo · July 2013

Hi Ruben

I still have pain 9 years later but I learned to stay on the med’s. I don’t like tylenol3 so I got my doctor to change me to Tamadol HCL 50Mg, it is a lot easier on the stomach and I can drive myself back and forth to Work with no problem. When the pain get real bad I take a Tamadol with Nucynta 100Mg but I cut them in half because a whole pill is too much for me.

Check with your Doctor and see if he will prescribe something else that will work better for you and don’t be afraid to take then meds. After what you been through you may need them for a while.

God Bless and Happy 4^th

Hondo

yensid683 · July 2013

by all means, take the meds!

I am 1 year post treatment and I needed the meds (hydroco apap elixer) for 9 weeks after treatments ended. I got off of them as I needed to get back to work and wouldn't drive when my ability could be impaired by pain meds. I switched to two ibuprofen in late August and while it was not as effective, but did take the sharpest edges off.

As my fellow survivors have said, take the meds, use a stool softener or laxative! Pain will **** your recovery. If the Tylenol 3 bothers you, ask your doctor for another med. There are all kinds of effective medications

My wife was very anti-meds, she felt I would become addicted to the hydroco, so I cut the dose and frequency and it brought the pains back. Speaking with my RO, I asked him what would be better, low dose every 4 hours, or a higher dose every 6 so I could actually swallow easier. He was emphatic in his response - definitely the higher dose, swallowing and eating is very important.

take the meds!

Duggie88 · July 2013

It can subside with Meds

Ruben

All good advice above and “T’s” is up to date. I had hallucinations with the first pain meds I was taking so they switched me to oxycodone. You can ask your doctor, they make the stuff in liquid form which makes it a breeze through the tube.

Better takes time and may as well allow time to pass comfortably.

Jeff

donfoo · July 2013

One week ahead

Hey,

Unless I read this incorrectly, you are not on any heavier meds/narcos? When I was at end of treatment, I was around 180mg per day of MS Contin, pure Morphine Sulfate, Extended Release. I took 60 in the morning, 60 late afternoon, and 60 before bed. This helped a lot with the main pain from throat and mouth.

At three weeks out I weaned down to about 45-90mg per day, about half and kept pain in check.

Now, at week four I am off the narcos and all pain meds even though there was no other. I live with a slight pain, like a sharp poke underneath by chin at the back of my jawbone, that roars when I yawn. Guess that will keep one alert! Since that is the only time that flares up and nothing else is generating pain, I felt it worth the trade off for the occasional ouchie rather than being on any meds at this point for me.

As is the motto of CSN - everyoen is different.

FYI - For some encouragement, at week 3 I was getting my appetite back and able to eat just about any solids. And now at week four, pretty much all food is fair game. Only thing is I still get more comfort from foods with a lo9t of moisture. Things like bread are no trouble but it is more the chew, chew, swallow swagger. just a minor inconvience I need to have a extra cup of water around more often.

Taste is also back 100%+. What I mean is all sense of taste is back 100% as of old. Only thing now is everything has an acute yet accurate flavor. I really hate any sodium and fine great joy in the most natural of flavors coming from all unprocessed foods and vegetables. In a way, I only hope that is a gift long term as having such a sensitive palette and eschewing all sodium are good things. I guess I could say that this is really one true gift offered out by the Beast.

Meanwhile, the only other lingerin side effect, which does not bother me at all is my need for more sleep each day but hey that is my body still working hard on restoring all the devastated tissues destroyed by the brutal treatments.

You did not mention Magic Mouthwash or topicals. During that 3 week post tx period I used to rinse a lot each day with a soda/salt mix: swish and spit. Magic Mouthwash, swish, then laydown and very slowly let it trickle down the sides of my mouth and throat. And topical lidocaine, I would apply to the sores and under the tongue ulcers then head off to stuff some food down the gullet. Lastly, my RO prescribed some dental paste topical lidocaine. It is a paste you rub directly on the spot and it turns into a waxy and hard substance that stays there. All these things also helped with my pain management plan.

Noellesmom · July 2013

donfoo said:
One week ahead
Hey,

Unless I read this incorrectly, you are not on any heavier meds/narcos? When I was at end of treatment, I was around 180mg per day of MS Contin, pure Morphine Sulfate, Extended Release. I took 60 in the morning, 60 late afternoon, and 60 before bed. This helped a lot with the main pain from throat and mouth.

At three weeks out I weaned down to about 45-90mg per day, about half and kept pain in check.

Now, at week four I am off the narcos and all pain meds even though there was no other. I live with a slight pain, like a sharp poke underneath by chin at the back of my jawbone, that roars when I yawn. Guess that will keep one alert! Since that is the only time that flares up and nothing else is generating pain, I felt it worth the trade off for the occasional ouchie rather than being on any meds at this point for me.

As is the motto of CSN - everyoen is different.

FYI - For some encouragement, at week 3 I was getting my appetite back and able to eat just about any solids. And now at week four, pretty much all food is fair game. Only thing is I still get more comfort from foods with a lo9t of moisture. Things like bread are no trouble but it is more the chew, chew, swallow swagger. just a minor inconvience I need to have a extra cup of water around more often.

Taste is also back 100%+. What I mean is all sense of taste is back 100% as of old. Only thing now is everything has an acute yet accurate flavor. I really hate any sodium and fine great joy in the most natural of flavors coming from all unprocessed foods and vegetables. In a way, I only hope that is a gift long term as having such a sensitive palette and eschewing all sodium are good things. I guess I could say that this is really one true gift offered out by the Beast.

Meanwhile, the only other lingerin side effect, which does not bother me at all is my need for more sleep each day but hey that is my body still working hard on restoring all the devastated tissues destroyed by the brutal treatments.

You did not mention Magic Mouthwash or topicals. During that 3 week post tx period I used to rinse a lot each day with a soda/salt mix: swish and spit. Magic Mouthwash, swish, then laydown and very slowly let it trickle down the sides of my mouth and throat. And topical lidocaine, I would apply to the sores and under the tongue ulcers then head off to stuff some food down the gullet. Lastly, my RO prescribed some dental paste topical lidocaine. It is a paste you rub directly on the spot and it turns into a waxy and hard substance that stays there. All these things also helped with my pain management plan.

agree with donfoo

If Tylenol 3 is controlling your pain well, that's great but there are alternatives. Ask about them. As for constipation - side effect, as you know, for pain meds. Do what your mother told you - eat plenty of fruits and vegetables, drink lots of liquids and get some DAILY help for the constipation - get ahead of the game there because that's a misery you can avoid.

Ruben and Jude · July 2013

donfoo said:
One week ahead
Hey,

Unless I read this incorrectly, you are not on any heavier meds/narcos? When I was at end of treatment, I was around 180mg per day of MS Contin, pure Morphine Sulfate, Extended Release. I took 60 in the morning, 60 late afternoon, and 60 before bed. This helped a lot with the main pain from throat and mouth.

At three weeks out I weaned down to about 45-90mg per day, about half and kept pain in check.

Now, at week four I am off the narcos and all pain meds even though there was no other. I live with a slight pain, like a sharp poke underneath by chin at the back of my jawbone, that roars when I yawn. Guess that will keep one alert! Since that is the only time that flares up and nothing else is generating pain, I felt it worth the trade off for the occasional ouchie rather than being on any meds at this point for me.

As is the motto of CSN - everyoen is different.

FYI - For some encouragement, at week 3 I was getting my appetite back and able to eat just about any solids. And now at week four, pretty much all food is fair game. Only thing is I still get more comfort from foods with a lo9t of moisture. Things like bread are no trouble but it is more the chew, chew, swallow swagger. just a minor inconvience I need to have a extra cup of water around more often.

Taste is also back 100%+. What I mean is all sense of taste is back 100% as of old. Only thing now is everything has an acute yet accurate flavor. I really hate any sodium and fine great joy in the most natural of flavors coming from all unprocessed foods and vegetables. In a way, I only hope that is a gift long term as having such a sensitive palette and eschewing all sodium are good things. I guess I could say that this is really one true gift offered out by the Beast.

Meanwhile, the only other lingerin side effect, which does not bother me at all is my need for more sleep each day but hey that is my body still working hard on restoring all the devastated tissues destroyed by the brutal treatments.

You did not mention Magic Mouthwash or topicals. During that 3 week post tx period I used to rinse a lot each day with a soda/salt mix: swish and spit. Magic Mouthwash, swish, then laydown and very slowly let it trickle down the sides of my mouth and throat. And topical lidocaine, I would apply to the sores and under the tongue ulcers then head off to stuff some food down the gullet. Lastly, my RO prescribed some dental paste topical lidocaine. It is a paste you rub directly on the spot and it turns into a waxy and hard substance that stays there. All these things also helped with my pain management plan.

Pain has subsided

Hi All,

Thanks for hearing me out. The pain is finally subsiding. I did take everyones advise and took the Tylenol 3 for about 3 days, which was all I needed to get over the hump. I haven't needed it for about 3 days now. And, I didn't get constipated!!!

Donfoo, I am experiencing the pain near the jaw, just as you described, but it's tolerable. And no, I didn't take anything other than the Tylenol 3, and yes, the doctors offered my anything and everything, but the only narc that worked was the Tye 3. Also, I wanted to tell you after reading your post about how well you are doing, and what you did during your treatment for oral care, I became more agressive with mine, and my mouth and tongue are doing really well...Thanks for posting your routine. Like I said, the only pain I now have is at the base of my jaw on the left side, and only when I open my mouth wide, sneeze or yawn, it's actively bleeding there as well, but only when I antagonize it!

Unfortunately, I have NO appitite. Just the thought of food going into my mouth makes me want to heave. Everything, except my routine meds, is going through the tube, but I'm working on it. I'm still drinking tea and water, but that's pretty much it. It seems like everytime I turn around, something is going into my tube, water, Osomolite, orgainc/alkaline pH meals.... yadda yadda yadda. I can't force myself to eat, but if I don't have some type of nutrition about every 2 hours, I get shakey and very irritable.

Once again, thank you all for your input.

Take care. God Bless.

Ruben (and Jude)

donfoo · July 2013

Ruben and Jude said:
Pain has subsided
Hi All,

Thanks for hearing me out. The pain is finally subsiding. I did take everyones advise and took the Tylenol 3 for about 3 days, which was all I needed to get over the hump. I haven't needed it for about 3 days now. And, I didn't get constipated!!!

Donfoo, I am experiencing the pain near the jaw, just as you described, but it's tolerable. And no, I didn't take anything other than the Tylenol 3, and yes, the doctors offered my anything and everything, but the only narc that worked was the Tye 3. Also, I wanted to tell you after reading your post about how well you are doing, and what you did during your treatment for oral care, I became more agressive with mine, and my mouth and tongue are doing really well...Thanks for posting your routine. Like I said, the only pain I now have is at the base of my jaw on the left side, and only when I open my mouth wide, sneeze or yawn, it's actively bleeding there as well, but only when I antagonize it!

Unfortunately, I have NO appitite. Just the thought of food going into my mouth makes me want to heave. Everything, except my routine meds, is going through the tube, but I'm working on it. I'm still drinking tea and water, but that's pretty much it. It seems like everytime I turn around, something is going into my tube, water, Osomolite, orgainc/alkaline pH meals.... yadda yadda yadda. I can't force myself to eat, but if I don't have some type of nutrition about every 2 hours, I get shakey and very irritable.

Once again, thank you all for your input.

Take care. God Bless.

Ruben (and Jude)

Love to hear it

I had to laugh Ruben, about your comment that the only time you get oral pain is while bigs yawns and sneezing and such. Exactly same with me, even now that I have this single sore festering back at the base of my tongue down under. It is really tolerable using the standard stuff: soda/salt and MM swishing but it does not cover the ouchie during those brief uncontrollable motuh movements.

SO glad that you found some of my tips helpful. They were so dramatic there was no doubt being more aggressive was a good thing to assist with clearing out the infections and such.

Since you are a PEG I guess it is a good thing you havce no appetitie. My journey did not include that aspect so I have no grounds to remark on what it is like to deal with the PEG. I just knew there was no f...ing way I was going to get one. I struggled dearly and not sure if anyone picked up on the baby feeder routine I incorporated along with the constant liquid protein drinks. Those things keep sufficient nutrients flowing down the gullet., I will say one thing where I will concede "luck". My tumor was on the midline and in nodes on one side so half my body was clear. I do believe this allowed the rads to not brutalize the entire span of the back of my mouth and left a small but clear path to pass food and liquid.

Best to you and keep FIGHTING. don

How long will this pain last??

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