Post Radiation Question
My husband finished his radiation treatments for throat cancer on 12/24/13 (yay!) and we were advised it would get worse before it gets better. However, I think we were both hopeful that we would see a little improvement 10 days post radiation. I know that everyone is different, but those of you that have been through radiation can you give us some timeline on when you started feeling a little better? He still having quite a bit of drainage that requires him to constantly spit and that impacts his sleeping quite a bit. The drainage is similar to sinus drainage so causing a lot of gagging and spitting. I think the weight loss and the lack of sleep is starting to take a toll on him. He does have a feeding tube and uses it daily but just putting in one or two shakes and water.
Due to some complications during radiation he wasn't able to take his Erbitux treatments so will start his last three Erbitux on 1/14/14.
Happy New Year, Thank you for the information.
Missy
Comments
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10 days is very early to be
seeing improvements.....and even when the improvements start, they aren't something you can usually tell like say....the next day. They are things a person looks back at...."two weeks ago, this was happening, and it's not happening now".....that's how getting better happens with this disease. The mucous gradually starts drying up, and I've heard folks say that happens pretty fast....when I say that, I'm saying that mucous was horrible one day.....four days later they notice it going away. For sure tho, by a month out he's going to look back at his last day of rads and think "wow, I really AM getting better".
p
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start feeling better
Missy,
Your husband sounds normal; his body is still reacting to the rads. Improvements should be starting, but may be small and slow to occur. Improvements are happening right now! Spitting and gagging may go on for a long time, but this too will lessen with time.
Getting up and about seems to help as does trying to eat and continuing to drink (lots). Don’t just wait for things to happen, give your body every chance you can for help (be proactive), but don’t overdo it, you are in for the long haul.
He is coming off the first few weeks post rads and should start the turn a round now. I had Erbitux and it gave me acne, dry cracked fingers and made me eye lashes and eye brows grow.
Matt
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Recovery is slow. As the doctors say, you will have a new normal. My last radiation was in April of this year. I returned to work mid May part time with full time occuring in June. I had seven weeks of radiation treatment with three rounds of cemo. Lost 50 pounds before my weight leveled off.
My big milestones were being able to sleep lying down and not having to carry a spit cup with me wherever I went.. The excessive spit left but is now replaced with dry mouth. The spit cup has been replaced with a water bottle of ice tea.
Every day gets a little better but you don’t really see the change. You reflect over last month and see the difference.
Your appetite will return slowly and I found out that some old favorites don’t taste the same or you just can’t eat them. I’ve been told that some things (taste buds) may not return but others seem to be enhanced. Everyone is different.
Keep in mind that the treatments have improved and that outcomes and success rates have improved.
You will have a new normal.
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not a straight line
Missy,
Recovery takes time, more for some, less for others. A couple things for sure is he will find a bottom and hit that with a thump. The way up is not linear, it will be a few good steps forward then one or two back. New side effects may pop up while others disappear over the horizon. All he can really do is take each day as it comes with as much energy to nourish and encourage his mind and body. In my case, I did not dip post tx but held steady for a couple weeks then started feeling improved health. I actually met Phrannie at 10 days post. Right after that things got better. Maybe she can visit and throw some get well fairy dust on him. He WILL get better, that is a fact. When is something you just need to put aside and deal with each new day, one at a time.
Don
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Missy, your husband’s
Missy, your husband’s recovery will be slow, and will be over several weeks, or perhaps months until "the new normal" sets in, as they've mentioned above. Many of us will attest to experiencing the worst part of recovery as the time period right as radiation treatment is ending and for the next couple of months afterwards. Measure his progress week to week as opposed to day to day. Make some goals for him and make them small, achievable and measurable (eat a small meal, shower and dress, open the mail, walk around the house for 15 minutes). Be patient, and improvement will come. This ain’t like getting over the flu. (I tell my wife that all the time).
David.
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Post radiation
Missy, I'm really glad to hear your husband if finished with radiation! That's great and now his body can start to heal but it is a slow process. I finished my last of 34 treatments on June 11, 2013 and felt the worst once I finished. I remember going back to the Oncologist about 10 days post treatment and his exact words were "this is as bad as it gets". I started feeling a little better in about 2 weeks and was able to start doing a little walking and very minimal exercise at the end of June. I actually got my feeding tube removed on July 5th but in hindsight should have kept it for a few more weeks As it was still painful to eat anything
The road to recovery is slow but the human body is pretty amazing in its ability to repair itself. slowly but surely the effects of radiation will start to diminish and your husband will begin to feel his new normal. Progress definitely needs to be measured in weeks or months and not days. My throat was still very sore until the end of October but it eventually felt better as well. Saliva is coming back, much better than a couple of months ago but not back to where I was before.
Like Matt( I think it was Matt) i had Erbitux as well and had a horrible case of acne but in the grand scheme of symptons, was just an inconvience vs a real proble and it did clear up before I finished all 7 chemo treatments.
I know it has been really tough the last few weeks as you/ your husband are mentally and physically exhausted and it has really taken a toll on the body and spirits. I am a very positive and upbeat guy but towards the end it was tough. My wife and family were my rock and their support was so important all the way through but especially at the end of treatment as you are just so beat down.
good luck and the finish line is getting closer everyday!
All the best to you and your husband,
Keith
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After treatment
When all the treatments were done, that first month was the worse for me. I was so fatigued and sick. Second month a little better but throat very sore. It's been 4 months and now my energy is almost back. I'm still having problems breathing because of persisitant swelling. Barely have a voice to speak with. I still have a temporary trache and cough and gag sometimes. Going on disability this month.
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Getting Better Every Day
Hi Missy,
My husband finished 7 weeks of radiation and three chemo treatments the day before Thanksgiving. Ten days out he was still sleeping on the couch propped up with pillows with lots of drainage. Today, 38 days out from radiation, he is eating pizza, sleeping in our bed horizontally and really feeling better. He still has the feeding tube but will get it out next week. It is such a tough treatment but it definitely gets better.
Best to you and your husband.
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missy, congrats 2 ur husband
missy, congrats 2 ur husband for finishing rads!!! ring the bell. as for healing that is a slow process. you must be patient. healing will come but it takes time. hang in there and stay positive.
btw, i also live in cincinnati. i'm in the northgate area, what area are you in?
God bless you,
dj
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Getting better
I'm 20 months post radiation for throat cancer and remember having those same thoughts about getting better. I was pouring six bottles of Ensure down my feeding tube everyday and I seemed to be stuck if not getting worse. The mucuos allowed no more than two hours of sleep at a time and after a month post treatment I seem not to be improving at all.
A long time friend who is a nutritionist at another hospital visited me at home and was mortified that I was using only Ensure in my feeding tube. I bought a $99 kitchen aide blender (not a $400 Vitamixer) and started mixing fresh veggies,fruit, and juice and pouring this down my tube. After a week of this I started seeing very small but incremental improvement but after a month I was noticing a bigger difference in my strength. This was not only much more nourishing but it was extremely empowering because I was now contributing to my wellness and survival.
This experience turned me into a health nut and I now continue to eat those same foods that I was putting in my feeding tube.
You will find plenty of info on the internet about what foods to blend but I mostly used; avocado, cabbage, beets, spinach, kale, blueberries, orange juice, yogurt, and sometimes eggs. The list goes on and on but mainly avoid fruit with seeds because they clog the tube. However a wood skewer could easily unclog the opening of the tube. In my final weeks of tube use I was taking home dinner leftovers and blending them for my feeding tube.
I was stage 4 with seven tumors throughout my throat, base of tongue, and lymph nodes on both sides.
I contribute my success to a blend of great medical care, nutrition, and positive attitude that I would come through this horrid experience a better, stronger person.
It will get better.
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Thank you for the words ofdebbiejeanne said:missy, congrats 2 ur husband
missy, congrats 2 ur husband for finishing rads!!! ring the bell. as for healing that is a slow process. you must be patient. healing will come but it takes time. hang in there and stay positive.
btw, i also live in cincinnati. i'm in the northgate area, what area are you in?
God bless you,
dj
Thank you for the words of encouragement, we are in West Chester and not enjoying the snow or the cold.
Lucky for both of us we don't have anywhere to go or anything to do next week. 0 -
Feeding TubeBrybry said:Getting better
I'm 20 months post radiation for throat cancer and remember having those same thoughts about getting better. I was pouring six bottles of Ensure down my feeding tube everyday and I seemed to be stuck if not getting worse. The mucuos allowed no more than two hours of sleep at a time and after a month post treatment I seem not to be improving at all.
A long time friend who is a nutritionist at another hospital visited me at home and was mortified that I was using only Ensure in my feeding tube. I bought a $99 kitchen aide blender (not a $400 Vitamixer) and started mixing fresh veggies,fruit, and juice and pouring this down my tube. After a week of this I started seeing very small but incremental improvement but after a month I was noticing a bigger difference in my strength. This was not only much more nourishing but it was extremely empowering because I was now contributing to my wellness and survival.
This experience turned me into a health nut and I now continue to eat those same foods that I was putting in my feeding tube.
You will find plenty of info on the internet about what foods to blend but I mostly used; avocado, cabbage, beets, spinach, kale, blueberries, orange juice, yogurt, and sometimes eggs. The list goes on and on but mainly avoid fruit with seeds because they clog the tube. However a wood skewer could easily unclog the opening of the tube. In my final weeks of tube use I was taking home dinner leftovers and blending them for my feeding tube.
I was stage 4 with seven tumors throughout my throat, base of tongue, and lymph nodes on both sides.
I contribute my success to a blend of great medical care, nutrition, and positive attitude that I would come through this horrid experience a better, stronger person.
It will get better.
Thank you for the information, so many questions abuot the feeding tube. The home nurse that came out to talk with us told us that we could only put the formula that you purchase through them in the feeding tube - which of course the formula was not covered by insurance. My husband has been using it a little bit but sometimes the formula makes him sick to his stomach. I am glad to hear ath we might be able to put other things in the tube, he would probably be more apt to using it if he knew the true nutritional value of what he was getting.
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Thank youBrybry said:Getting better
I'm 20 months post radiation for throat cancer and remember having those same thoughts about getting better. I was pouring six bottles of Ensure down my feeding tube everyday and I seemed to be stuck if not getting worse. The mucuos allowed no more than two hours of sleep at a time and after a month post treatment I seem not to be improving at all.
A long time friend who is a nutritionist at another hospital visited me at home and was mortified that I was using only Ensure in my feeding tube. I bought a $99 kitchen aide blender (not a $400 Vitamixer) and started mixing fresh veggies,fruit, and juice and pouring this down my tube. After a week of this I started seeing very small but incremental improvement but after a month I was noticing a bigger difference in my strength. This was not only much more nourishing but it was extremely empowering because I was now contributing to my wellness and survival.
This experience turned me into a health nut and I now continue to eat those same foods that I was putting in my feeding tube.
You will find plenty of info on the internet about what foods to blend but I mostly used; avocado, cabbage, beets, spinach, kale, blueberries, orange juice, yogurt, and sometimes eggs. The list goes on and on but mainly avoid fruit with seeds because they clog the tube. However a wood skewer could easily unclog the opening of the tube. In my final weeks of tube use I was taking home dinner leftovers and blending them for my feeding tube.
I was stage 4 with seven tumors throughout my throat, base of tongue, and lymph nodes on both sides.
I contribute my success to a blend of great medical care, nutrition, and positive attitude that I would come through this horrid experience a better, stronger person.
It will get better.
Thank you everyone for all the kind comments, suggestions and words of encouragement. It really helps knowing that he is healing exactly as expected. Thankfully, last night was a really good night. He saw his Radiation oncologist yesterday and discussed the mucous and she said some people have done well with Mucinex so he tried it and it really helped. He was able to get a good night sleep and actually ate a fried egg today when he got up. I know that with this condition that every day is a challenge and will bring something different, so we will celebrate the small victories. She also told him to gain 10 pounds and he can get the feeding tube removed, he has had a hate/hate relationship with the PEG tube but I think he is starting to see the benefit of it.
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WelcomeBrybry said:Getting better
I'm 20 months post radiation for throat cancer and remember having those same thoughts about getting better. I was pouring six bottles of Ensure down my feeding tube everyday and I seemed to be stuck if not getting worse. The mucuos allowed no more than two hours of sleep at a time and after a month post treatment I seem not to be improving at all.
A long time friend who is a nutritionist at another hospital visited me at home and was mortified that I was using only Ensure in my feeding tube. I bought a $99 kitchen aide blender (not a $400 Vitamixer) and started mixing fresh veggies,fruit, and juice and pouring this down my tube. After a week of this I started seeing very small but incremental improvement but after a month I was noticing a bigger difference in my strength. This was not only much more nourishing but it was extremely empowering because I was now contributing to my wellness and survival.
This experience turned me into a health nut and I now continue to eat those same foods that I was putting in my feeding tube.
You will find plenty of info on the internet about what foods to blend but I mostly used; avocado, cabbage, beets, spinach, kale, blueberries, orange juice, yogurt, and sometimes eggs. The list goes on and on but mainly avoid fruit with seeds because they clog the tube. However a wood skewer could easily unclog the opening of the tube. In my final weeks of tube use I was taking home dinner leftovers and blending them for my feeding tube.
I was stage 4 with seven tumors throughout my throat, base of tongue, and lymph nodes on both sides.
I contribute my success to a blend of great medical care, nutrition, and positive attitude that I would come through this horrid experience a better, stronger person.
It will get better.
Welcome to CSN Brybry.
I contribute my success to a blend of great medical care, nutrition, and positive attitude that I would come through this horrid experience a better, stronger person.
Well said!
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Getting relief earliermdug412 said:Thank you
Thank you everyone for all the kind comments, suggestions and words of encouragement. It really helps knowing that he is healing exactly as expected. Thankfully, last night was a really good night. He saw his Radiation oncologist yesterday and discussed the mucous and she said some people have done well with Mucinex so he tried it and it really helped. He was able to get a good night sleep and actually ate a fried egg today when he got up. I know that with this condition that every day is a challenge and will bring something different, so we will celebrate the small victories. She also told him to gain 10 pounds and he can get the feeding tube removed, he has had a hate/hate relationship with the PEG tube but I think he is starting to see the benefit of it.
Missy,
I never had a PEG but from what I gather if one's weight is stablized and some gains are showing progress, you probably can be more demanding to get the thing out sooner if you desire.
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i'm not pleased with the goldmdug412 said:Thank you for the words of
Thank you for the words of encouragement, we are in West Chester and not enjoying the snow or the cold.
Lucky for both of us we don't have anywhere to go or anything to do next week. i'm not pleased with the cold either....burrrr. i am soooooooo ready for spring, neighbor.....lol.
dj
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Missy, glad to hear he had amdug412 said:Thank you
Thank you everyone for all the kind comments, suggestions and words of encouragement. It really helps knowing that he is healing exactly as expected. Thankfully, last night was a really good night. He saw his Radiation oncologist yesterday and discussed the mucous and she said some people have done well with Mucinex so he tried it and it really helped. He was able to get a good night sleep and actually ate a fried egg today when he got up. I know that with this condition that every day is a challenge and will bring something different, so we will celebrate the small victories. She also told him to gain 10 pounds and he can get the feeding tube removed, he has had a hate/hate relationship with the PEG tube but I think he is starting to see the benefit of it.
Missy, glad to hear he had a good ntie. you are right to celebrate all the little victories b/c to us they are really BIGGGG victories....lol. with each new food, drink, taste, we get a little more encouraged, so keep celebrating and tell your hubby to keep trying new things.
if you don't mind my asking, what is your hubby's name and where did he have cancer? i understand throat cancer but where at in throat. mine was in the larynx. i am so glad for him that radiation is done and now your mornings/days are yours and there's no need to run to tx everyday. enjoy. stay warm.
God bless you,
dj
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Dj,debbiejeanne said:Missy, glad to hear he had a
Missy, glad to hear he had a good ntie. you are right to celebrate all the little victories b/c to us they are really BIGGGG victories....lol. with each new food, drink, taste, we get a little more encouraged, so keep celebrating and tell your hubby to keep trying new things.
if you don't mind my asking, what is your hubby's name and where did he have cancer? i understand throat cancer but where at in throat. mine was in the larynx. i am so glad for him that radiation is done and now your mornings/days are yours and there's no need to run to tx everyday. enjoy. stay warm.
God bless you,
dj
My husband's name is TonyDj,
My husband's name is Tony and he was diagnosed 7/28/13. His cancer is HPV+ and they staged it at Stage 4 due to lymph node involvement on both sides of his neck. After the radiation oncologist and medical oncologist pushed the Surgical ENT to perform another biopsy they found a tumor at the base of his tongue on both the left and right side. He started with chemo on 8/26 - Cisplatin, Taxotere and 5-FU. He had two rounds of chemo and started radiation on 10/31. He will have his Pet scan around 3/17 and we are hoping for NED.
You are so right about not having to go out for radiation, he had his treatments at Christ Hospital and it's been nice not having to go there every day. We have been very pleased with his oncologists and the treatment plan. Congratulations on having this behind you and being cancer free. What a blessing!
Missy
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Similar Treatment Plan..mdug412 said:Dj,
My husband's name is TonyDj,
My husband's name is Tony and he was diagnosed 7/28/13. His cancer is HPV+ and they staged it at Stage 4 due to lymph node involvement on both sides of his neck. After the radiation oncologist and medical oncologist pushed the Surgical ENT to perform another biopsy they found a tumor at the base of his tongue on both the left and right side. He started with chemo on 8/26 - Cisplatin, Taxotere and 5-FU. He had two rounds of chemo and started radiation on 10/31. He will have his Pet scan around 3/17 and we are hoping for NED.
You are so right about not having to go out for radiation, he had his treatments at Christ Hospital and it's been nice not having to go there every day. We have been very pleased with his oncologists and the treatment plan. Congratulations on having this behind you and being cancer free. What a blessing!
Missy
I was STGIII SCC Tonsils and a lymphnode, all on the right side, also HPV+.. the gift that keeps giving.
Myself and a few others had similar Tx, nine weeks (three week cycles) of TPF (cisplatin, taxotere and 5FU). The 5FU through a port in my chest, Monday through Thursday night.
Then an additional seven weeks of concurrent weekly carboplatin and 35 daily rads sessions... I also had Amifostine injections every day just before rads... They tend to help with preventing or minimizong the thick ropey phlegm and mucous that a lot seem to battle.
Must have worked well for me as I never had it...
It's rough, a battle..., but doable..My initial Dx was Jan2009, finished up Tx Jun2009..., clean and clear since...
Thoughts and prayers,
John
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