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How long after radiation will the pain finally get easier?

Em11
Posts: 13
Joined: Oct 2010

My husband just finished 6 weeks of rads last week. The pain this week has gotten worse. He takes about 6 oxycodones a day, but still has moments where he literally shivers with pain when he swallows or has a bit of acid reflux. He's taking something for that, but it's not 100% working. He takes all his medicine and nutrition through a peg tube. Thank god for that thing being put in way back even prior to surgery.

Anyway, I just hate seeing him in so much pain, and it doesn't seem to be getting better. Are we just hoping for too much too soon? He's always been such a fast healer through all of this, the chemo, the surgery, but this is discouraging him quite a bit.

Thanks, y'all. Without this board, we'd be so in the dark.

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

But, that being said, pretty much the standard answer to your question is in the time frame of four weeks post rads... In reality even though you are finished with the daily rads, your body is still cooking (for lack of a better word).

Even then, this is all a very, very slow process, but don't give up hope. Stay positive and keep trying everything....

I use Protonix for the acid reflux, it seems to work very well for me....

Best,
John

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Clicked on your page to see your husband has had a lot done to him in his battle with the C. With his history...I cannot speak from experience, as he has had so much more done than I. I can only urge you two to be patient. He is young enough that the healing should come, in time, and when that time comes your lives together will daily be proof that it was well worth the battle. Prayers are with you.

Believe

kcass

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

The pain in the mouth and throat can be severe. I had open sores in my mouth, on my tongue and in my throat. I couldn't swallow for weeks and my Dr's said to keep trying. Keep trying I thought...Jeez...I'd like to see them swallow with this pain !!!! I was upset that all Dr's and others tried to push the swallowing other than water and liquids. Well, the sore heal and the swallowing comes back, but over time. I can't recall exactly, but it was almost 4 months before I was eating much and probably 8 months till I could eat enough to fulfill my nourishment. Others went for longer than I, but all of us got better. Tell your husband to have faith and don't push it. There is no prize for eating early! Let the mouth, tongue, neck (in and out) heal...It will.
take care and all the best,
Steve

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

No need for him to be so uncomfortable. Oxycodone is not really that strong of a med for the kind of pain caused by radiation. A lot of people here were on the Fentanyl patch or morphine. Everyone does heal differently but it also seems that everyone got worse after radiation ended for about a month. He needs something stronger until then. His body can't heal properly if it is in constant pain. Please talk to his doctor asap. No need for him to suffer over the weekend.

Bob

Em11
Posts: 13
Joined: Oct 2010

Thank you for the quick answers and information.

I don't think either of us were prepared for how much worse he was going to feel after that last radiation treatment. I think we sort of thought that he might start feeling at least a slight improvement after a week. But the fact that he seems to have gotten worse sort of kicked us down. I guess we're just glad that part is over and are ready to move forward. I do think our expectations are more accurate now. Of all the doctors my husband has had, the radiation oncologist has been the least personable. With the other docs, we've had so much coaching and discussion, but the rad doc, well... we've had to ask all the right questions. He's good, just not a big talker. I think he leans on his nurse for that.

Thank you for the suggestion to get stronger meds. I've been thinking that the pain would be inhibiting to his healing. I'll get to work on that asap.

Y'all are some of the angels that walk on earth. Thank you so much.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Em, as other have said, it can take 3-4 weeks before things settle down and he starts to notice a little improvement. This is one of the hardest parts of the treatment. I crashed and burned about 10 days out and we readmitted to hospital for a week due to the pain and then heavy depression set in. I was on morphine, Vicodin, anti emetic ++ all thru the tube, vomiting and just very very sick and depleted of all life force.

When they took me in - the doctors were at a loss and to be honest I think they were scared shitless. They called in a shrink and he talked me through the mess a little and then they changed all my meds around completely. I think Lyrica was the main pain med used along with some Anti-Anxiety, Anti-Depressants etc. I had my first real nights sleep in nearly 2 months. That was a clear turning point for me. It was a long slow climb out from there but I had seen a little light in the tunnel.

It is a difficult time Em but he will come through. He has to measure improvement by the week, not the day. there will be some ups and downs (3 steps forward - 2 steps back) for next couple of weeks.

Let him know this is a normal thing he is experiencing and it will get better. When he is up to it, shorts walks outside, maybe go to local store to buy a newspaper or cafe and sit and read a bit, sip on a smoothy to get some rhythm back in his life. This will also help and the walks can be increased slowly to accommodate how he feels.

Hope this is of some use.
Scam

beru1977
Posts: 3
Joined: Apr 2011

My husband was on Roxicet for quite awhile after he finished radiation treatment. We never thought the pain would go away, but it did. Absolutely, your husband should be made more comfortable. Talk to his oncologist about something stronger like liquid Roxicet. Radiation is the gift that keeps on giving, he will feel the effects for a few or more months after the last treatment.

tjuhlin
Posts: 19
Joined: Feb 2011

Em, though I am a novice here on this site,I will be taking my turn at radiation soon. I can't comment on your husband's pain, but I can offer some suggestions on the question of Acid Reflux. I've suffered from Acid Reflux for over 50 years (hiatal hernia) and I found a solution for me about 5 years ago. I've also learned that any type or form of antibiotics destroys the good/digestive bacteria in your stomach and after taking those type of drugs you need to reintroduce that particular bacteria back into your body to aid with your digestion. There are many digestive aids (acidophilus for one)on the market and some come in liquid forms which are to be found in the refrigeration section of your local health food store. I also use apples to help control or stop my acid reflux. The apples add a small amount of acid to the stomach to aid in the digestion. I've use whole apples. I'm not sure if applesauce works but I have used diluted apple cider vinegar and that did work for me.

By eating a apple and taking a digestive aid I was able to stop or give up my Prilosec habit years ago.

You might already know this so if you do I apolgize for my ignorance. My thought on this subject is that it is one less drug your husband and his body has to endure.

You both are in my prayers...

Terry

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

Yes, the pain is at its worst the week after the end of radiation. Call the doc and insist on better pain control. The fentanyl patch releases a small amount of pain med over time so you don't get the peaks and valleys of medication in the blood stream. I am surprised you have not been offered patches. Our Rad Doc kept asking about pain and was fine with Buzz going on the patches. Buzz is about 2 months post treatment and is eating 100% by mouth, not using the tube, not taking any pain meds, and has a very mild sore throat which he can only feel with a swallow. There is an end to all this misery. Karen

OHNC survivor
Posts: 4
Joined: Mar 2011

Hi Em, sorry your husband is having so much difficulty. H&N cancer is really a nasty business. I'm asked this question by a lot of people, who come into my support group. almost everybody,(including me at the time) thinks when radiation is finished, you will start healing. Unfortunately, like everyone else wrote, the radiation continues to harm the tissues. But,rest assured, it does get better, although slowly.
I'm a 12yr survivor, but I remember it like it was yesterday. It took two to three months to get rid of the terrible sore throat, burning mouth, and fatigue. Then, it started turning around, and I got my taste buds back, and started eating more than cream soups, milkshakes, and boiled eggs. When I felt down and depressed, I watched all the old, dopey sitcoms. I was too fatigued to laugh out loud, but I knew laughing in my mind would count.
I hope by now you've complained to the doctor about pain meds, and over the counter products to ease dry mouth, etc. Doctors are great, but they don't volunteer anything. You have to let them know the problems, and ask questions.
If you're not familiar with SPOHNC (Support for People with Oral, Head & Neck Cancer)go on their website spohnc.org. It's a terrific site with loads of info, freebies, links, support groups, etc. They have a great cookbook for the eating challenged that you can order.
I wish you both the best outcome.
Valerie

TheDane's picture
TheDane
Posts: 27
Joined: Oct 2010

OK, I'll chime in.
I had 30 rads and 6 erbitux infusions over 6 weeks.
I'm 44 and went into treatment otherwise very healthy and strong.
The radiation has wrecked me.
The six weeks following the end of radiation were about the worst of my life.
Radiation damage usually gets worse AFTER the end of treatment like this.
Pain pills would have never worked. I was on the Fentanyl patch full time and that saved me.
Pain - horrible.
Second degree radiation burns on my whole neck. Inside of my mouth and throat totally burned white.
Five months later I can hardly eat anything normally - still on that PEG tube for most nutrition. Everything still burns or hurts when I try to eat it.
Five months later I still need about 12 to 15 hours of sleep a day to function at all.

I don't mean to scare - but I went through a lot of hell because my family and I thought I was supposed to be healing faster, or that there was something wrong with me, or that I wasn't following the Dr.'s orders correctly.

Turns out that's just how it goes for some of us. I wish I really had a better understanding of that earlier.

Radiation damage IS NOT like anything else you may have experienced before. The healing WILL be slower and he may experience some things getting better while others get worse.
All the people who work at the CTCA physical therapy and rehab wing where I go all have a saying: "Radiation: the gift that keeps on giving."
They mean it.

From what I gather from these message boards - I have had it a bit worse than average, but there are some here who have had it worse than me.

I hope and I also suspect your husband will do better than I have.

Patience. Patience. Patience. And hold tight to each other.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Some people have a tougher time that others. I was like Scam and The Dane. The poop really hit the fan for me a few weeks after radiation ended. I could not keep any nutrition in me. I could not stop vomiting. The inside of my mouth and throat were white with sores. My tongue was grey with sores and my mouth just bled constantly. The pain was very bad. I had a lip lock 24/7 on the bottle of magic swizzle. I also was on 75 mcgs of fentanyl and I had a liquid Roxicet.

I could not even drink by mouth for 5 months and I didn't eat for 9 moths by mouth. My tongue still feels scalded and I am out just shy if two years.

jermain21
Posts: 15
Joined: Apr 2011

My last radiation appointment was Dec 27 2009, I would say I was able to eat with little to no pain maybe in mid Sept. But I did 7 weeks of radiation for two different tumors located close to each other. Hope it happens sooner for your husband.

Em11
Posts: 13
Joined: Oct 2010

Thanks a bunch y'all. My husband is feeling a bit better, still extremely fatigued, but the pain seems to have gotten better. He refused anything more than oxycodone, though. I guess he has to work through it in his own way. He is taking less of them now, though, than he was last week. Still not eating, of course, but he's taking 6 cans of nutrition through his tube. The doc told him the other day that if he got any skinnier, he'd have to hospitalize him, and I think that was enough to snap my hubby out of his funk. He's got that fighting spirit again and put on three pounds already.

tnsilcncer's picture
tnsilcncer
Posts: 64
Joined: Apr 2011

I just signed up for this sight today, after a very frustrating visit with my radiology doc. I was diagnosed with tonsil cancer December 1st, 2010. I had 32 radiations and 2 chemos. Yesterday was 11 weeks post radiation and I'm still very blistered in my throat with eating only making the pencil eraser size water blisters multiply. I use the magic mouthwash like crazy and also have been taking one 5/500 hydro about half an hour before meals to help with pain. Yesterday afternoon I noticed some yellow patches on the back of my throat so I went to see my radiology doc today to see if I had thrush again. She basically looked at my throat and said she doesn't know what is wrong with me, I should NOT still be having this much blistering and pain, she isn't prescribing any more pain meds for me because I was only masking the problem by taking them rather than solving the problem and to quit eating and use my PEG tube. She also recomended that I immediately see my ENT who needs to do a scope so that he can determine whats wrong because whatever is going on may delay my neck disection surgery on May 17th. She also stressed that I need to tell my ENT that behind my tongue is sore, not my throat, because she wants him to do a scope. Behind my tongue IS NOT sore, my throat is and you can see the blisters where it hurts! I feel like I'm blubbering on....but the sores aren't anything different than what I've been experiencing since about 3 or so weeks post radiation and I know from having had it before during all of this that the yellow patches are thrush which is common. I left her office feeling very frustrated and hopeless because everything that I've read says all of this should be settling down about 6 to 8 weeks post radiation and mine is still going strong. What I needed to hear from her is yes, this has gone on a little longer than is typical but no there is nothing wrong with me, I'm just taking the longer end of the spectrum. I worked all the way through radiation, missed work the 3rd and 4th day after chemo because I was so sick, I've really tried to be tough through all of this but I don't know how I'm going to be able to eat without pain meds, I do still have morphine and fentanyl patches that I never used because they were too strong, but I really don't want to resort to that. Anyway..........I've been surfing this sight and it has made me feel much better, especially hawk711's post. I know it will get better, I just feel like going back to the feeding tube 100% is admiting defeat, even though it's not. I'm not the only one who is still having pretty good pain months after it should be over. Thank you all for being here!!!

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

If needed, that's what they are for....

Welcome to the site, sorry you are going through so much, but hang in there....

As for the ENT, I agree, schedule an appointment for as soon as you can get in. I would presume that he will scope you anyways, that's what they do....

Thoughts and Prayers,
John

tnsilcncer's picture
tnsilcncer
Posts: 64
Joined: Apr 2011

Thank you John. I'm scheduled with my ENT for Friday, and I have enough pain meds to get me through until then, so fingers crossed, I'll get some answers or at least reassurance. It's amazing the lessons that cancer teaches, patience being the primary one! :)

Karen

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Unfortunately you have no choice....

Between the ENT or you Rads MD, one should also be able to provide you more meds if needed as well. The comment about not prescribing you anymore pain meds because you are masking the problem is just rediculous to me.... If she or you knew what the problem was, you'd have a remedy for it. Even though she is suggesting you are causing it by not using the PEG is another comment that just seems crazy to me...OK, I can see that you could be irritating it. But you are saying you are having blisters form...see what your ENT has to say. I can only hope the ENT gives you something better in terms of a diagnosis and remedy.

Let us know how the visit goes...

Best,
John

tnsilcncer's picture
tnsilcncer
Posts: 64
Joined: Apr 2011

I will be sure to let you know....maybe my radiologist was just having a bad day because up to this point I've had no problems at all. Will be praying for guidance for the doctors. I'm sure it will be fine :)

tnsilcncer's picture
tnsilcncer
Posts: 64
Joined: Apr 2011

And again, thank you for the encouragement and support. So much appreciated. Sometimes you feel like you're the only one in the world that has ever had to deal with this stuff......

tnsilcncer's picture
tnsilcncer
Posts: 64
Joined: Apr 2011

Had my appointment with the ENT this morning, told him exactly what my radiologist said. He looked at my throat, then held my tongue with gauze and looked at the back of my throat with a mirror. After the exam, he looked at me with a semi-smirk and said "What you have is muscousitis. Everyone gets that after radiation like you had. Does it usually last this long? No. You're one of the lucky few. The lining of your throat is very inflamed and red. Do not start using your feeding tube unless you have to. Take your pain meds and eat. Have a nice day, see you at surgery." He then prescribed me the medication I need to eat, in fact enough to probably last through surgery. My radiologist must have just been having a bad day!

Hugs!
Karen

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

While some of my medical professionals are very specialized, and for what they do I'm extremely satisfied. But sometimes I think they don't see the forest for the trees....I think at times they become a little too specialized.

Anyways, my ENT is awesome, I totally trust him.

On yours, I'm very glad that he took the time and explained to you what is going on. Also that he provided you with the relief you needed, meds, mentally, and physically.

Hope you have a great week-end.

Best,
John

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