A little update on my Dad

VanessaSLO

Hey everybody!

Again, I did not post much but I read a lot. I hope you all had a good Christmas.

Well, my Dad is now 3,5 months post chemoradiation. I think that he actually got stuck at the same place with pain in his throat. When he finished his tx after two weeks things got better. He never had PEG tube and was able to eat soft and mixed food all the time. He is able to maintain his weight. He had ulcers in his mouth, white coated tongue and was a bit dehydrated, 'cause he had hard time swallowing all the time. He had his first check up on Nov 21th: the rad onc doctor only touched his neck, look into his mouth and a bit down the throat. She said that his mouth is still not healed and it will get better with time, but slowly.

But now, more than one month after that doctor check-up things are pretty much the same. He goes to his medical doctors at the local hospital to check his mouth and she says his mouth is healing and gets better each week, but he doesn't feel that way. He still has a lot of pain when he swallows. He says on the scale from 1 to 10 his pain when he swallows is around 9 and when he does not swallow around 1 or 2 or even nothing. It is really weird that he still has so much pain swallowing after all this time. His food still needs to be mixed and pureed.

Is all this normal that this pain lasts for so long? He can't say whether this pain is getting easier or not. Maybe a little but it is hardly noticeble. He is quiet depressed about it. I did not read here that anyone had so much throat pain after 3 months? His pain is located at the exact place where the tumour was and where he got the most radiation.

Did anyone else had so much pain 3 or more months after treatment (no surgery, no neck dissection)?

 

Thank you again and God bless to everyone!!

Grandmax4

I can't really

relate to the pain your Dad is experiencing ,but, wish him well...I think almost everyone on here had a peg tube, so maybe it's earlier for him, than most, to be swallowing

Skiffin16

The Term Normal
The term "Normal" around here has an entirely different meaning than in the world outside cancer.....

So with that, I'd say that his pain and condition isn't really not normal. But it isn't the standard that most of us have went through.

Meaning that I don't think his condition is one that warrants a lot of worry or concern. But one that definitely should be monitored for change.

I was one that didn't have a PEG, and there are several others, though we are probably in the lower end of the spectrum.

It was rough, but I wasn't prescribed one, and for me that worked out fine.

It probably took me a good month or two post treatment to start sampling soft foods.. I was pretty much on Ensure Plus for several weeks.

Now I din't have any other severe difficulties, so I had it somewhat easy recovering, just slow.

So even I with no problems it took a good twom months post rads... But several more months that I didn't have some pain or discomfort.

If you trust in his MD's and they seem to be hands on, I would take them at their Dx. It might not feel like it's healing, but they seem to see and feel that it is.

Communication is key...if he just feels that something isn't right, press them on it to make them understand.

Hopefully his pain will start easing up.., but it's measured in weeks and months, definitely not days or weeks.

Best,
John

Tim6003

Skiffin16 said:

The Term Normal
The term "Normal" around here has an entirely different meaning than in the world outside cancer.....

So with that, I'd say that his pain and condition isn't really not normal. But it isn't the standard that most of us have went through.

Meaning that I don't think his condition is one that warrants a lot of worry or concern. But one that definitely should be monitored for change.

I was one that didn't have a PEG, and there are several others, though we are probably in the lower end of the spectrum.

It was rough, but I wasn't prescribed one, and for me that worked out fine.

It probably took me a good month or two post treatment to start sampling soft foods.. I was pretty much on Ensure Plus for several weeks.

Now I din't have any other severe difficulties, so I had it somewhat easy recovering, just slow.

So even I with no problems it took a good twom months post rads... But several more months that I didn't have some pain or discomfort.

If you trust in his MD's and they seem to be hands on, I would take them at their Dx. It might not feel like it's healing, but they seem to see and feel that it is.

Communication is key...if he just feels that something isn't right, press them on it to make them understand.

Hopefully his pain will start easing up.., but it's measured in weeks and months, definitely not days or weeks.

Best,
John

Hi Vanessa...

So good to see you post! 

I was thinking about your dad and his pain level as I read your post, and I thought, I can't relate.  But then I realized your dad NEVER had a feeding tube, I did  and did not use my throat to eat at all (only drinking fluids) for 2 months after my last radiation.  In fact one month into my radiation treatments I used my feeding tube almost all the time.

Do you think your dad's throat could be healing slower because he never had a feeding tube, thus the "use" of his throat with food scraping over all the sore spots is the cause of pain / slow healing?  It would make sense to me, but I am no doctor.

I would also like to add that I did not have my feeding tube removed until five months after my last radiation and I only stopped using my feeding tube entirely about 3 weeks before it was removed.

I'm sorry your dad has to deal with the pain.  I know each person is different and I know not all people need the feeding tube, but I am one who believes the feeding tube is the best thing to have as an insurance policy in case the patient does like me and loses 70lbs during treatment.

Please say hello to mom and dad for me ....tell your dad I'm always amazed at anyone who has gone thru what we do without the feeding tube, and if he can do that, he will get thru this even if it is hard now, it will end.  I'm betting my chips on dad and one day he will look back on this and be enjoying no pain!

Best,

Tim

 

Hope your entire family had a great Christmas and a very happy new year!!!

Pam M

Tim6003 said:

Hi Vanessa...

So good to see you post! 

I was thinking about your dad and his pain level as I read your post, and I thought, I can't relate.  But then I realized your dad NEVER had a feeding tube, I did  and did not use my throat to eat at all (only drinking fluids) for 2 months after my last radiation.  In fact one month into my radiation treatments I used my feeding tube almost all the time.

Do you think your dad's throat could be healing slower because he never had a feeding tube, thus the "use" of his throat with food scraping over all the sore spots is the cause of pain / slow healing?  It would make sense to me, but I am no doctor.

I would also like to add that I did not have my feeding tube removed until five months after my last radiation and I only stopped using my feeding tube entirely about 3 weeks before it was removed.

I'm sorry your dad has to deal with the pain.  I know each person is different and I know not all people need the feeding tube, but I am one who believes the feeding tube is the best thing to have as an insurance policy in case the patient does like me and loses 70lbs during treatment.

Please say hello to mom and dad for me ....tell your dad I'm always amazed at anyone who has gone thru what we do without the feeding tube, and if he can do that, he will get thru this even if it is hard now, it will end.  I'm betting my chips on dad and one day he will look back on this and be enjoying no pain!

Best,

Tim

 

Hope your entire family had a great Christmas and a very happy new year!!!

Good Point, Tim

Makes sense that food moving over the sore spots might rough up inflammed areas.  Very good that he's been able to keep swallowing, though.  Hope he notices more reduction in pain soon.

phrannie51

Tim6003 said:

Hi Vanessa...

So good to see you post! 

I was thinking about your dad and his pain level as I read your post, and I thought, I can't relate.  But then I realized your dad NEVER had a feeding tube, I did  and did not use my throat to eat at all (only drinking fluids) for 2 months after my last radiation.  In fact one month into my radiation treatments I used my feeding tube almost all the time.

Do you think your dad's throat could be healing slower because he never had a feeding tube, thus the "use" of his throat with food scraping over all the sore spots is the cause of pain / slow healing?  It would make sense to me, but I am no doctor.

I would also like to add that I did not have my feeding tube removed until five months after my last radiation and I only stopped using my feeding tube entirely about 3 weeks before it was removed.

I'm sorry your dad has to deal with the pain.  I know each person is different and I know not all people need the feeding tube, but I am one who believes the feeding tube is the best thing to have as an insurance policy in case the patient does like me and loses 70lbs during treatment.

Please say hello to mom and dad for me ....tell your dad I'm always amazed at anyone who has gone thru what we do without the feeding tube, and if he can do that, he will get thru this even if it is hard now, it will end.  I'm betting my chips on dad and one day he will look back on this and be enjoying no pain!

Best,

Tim

 

Hope your entire family had a great Christmas and a very happy new year!!!

Good thinking, Tim...

I wondered the same thing....if the constant use of his throat wasn't what is keeping it so sore.  A pain level of 8 or 9 seems like a lot this long after finishing radiation....but then, I also had a feeding tube that stayed in until I was a couple months out of the last chemo (and 4 months after the last rad).  Sure wish he'd get a little reprieve from pain, so that he'd feel like there was some good stuff coming down the road for him.  There IS!!  It's just hard to see when you're in pain all the time.

p

hwt

phrannie51 said:

Good thinking, Tim...

I wondered the same thing....if the constant use of his throat wasn't what is keeping it so sore.  A pain level of 8 or 9 seems like a lot this long after finishing radiation....but then, I also had a feeding tube that stayed in until I was a couple months out of the last chemo (and 4 months after the last rad).  Sure wish he'd get a little reprieve from pain, so that he'd feel like there was some good stuff coming down the road for him.  There IS!!  It's just hard to see when you're in pain all the time.

p

Vanessa

My tx hit me worst with lip sores. While they healed over first 2 weeks post tx, some 7 months later they still have discomfort, swelling and sensitivity. I don't call mine pain but it is 24/7 discomfort. I will keep your Dad in my prayers and wish your family the best in 2013!

VanessaSLO

hwt said:

Vanessa

My tx hit me worst with lip sores. While they healed over first 2 weeks post tx, some 7 months later they still have discomfort, swelling and sensitivity. I don't call mine pain but it is 24/7 discomfort. I will keep your Dad in my prayers and wish your family the best in 2013!

Guys, you always seem to know

Guys, you always seem to know exactly what to say to make me feel better. I thought by myself too that he irritates his throat with the food and it can't heal that fast. He eats every three hours and between those meals he drinks water, takes medications, rinses and gargles... So, his throat can never really rest and have time to heal. On January 16th he has another check-up with Rad Onc doctor, so we'll see then. I hope he will have CT this time, because in November they said it was too soon for one due to his throat and mouth still very sore. We have very good doctors in our capital city wher ONC hospital is - their knowledge and education was achieved in UK or US.

Well, yesterday dad said to my husband that for the last 14 days he has a little less pain, but he don't want to brag about it because he is afraid he'll "jinx it" . Then I said that he should tell us when he feels a bit better but he said that it seems to him that every time he got a bit happy about a little improvement, then it got a bit worse again. So he is rather quiet about it or just says it is the same.

Well, thank you again for your opinions and thoughts. You always help me a lot!!!

Our christmas was wonderful. Mom and dad live now in my city and we were able to spend Christmass eve together. We had a nice family dinner: them, my husband and daughter, my parents-in-law. It was great! My little girl was opening Christmass presents in front of our big christmass tree in our living room... It was wonderful family evening. My dad could not eat dinner with us and to tell you the truth I did not even make any "culinary specialties" so that I would not make him said 'cause he can't eat with us. I think this year it was more important we were together than the food we were eating.

 

Skiffin16

VanessaSLO said:

Guys, you always seem to know

Guys, you always seem to know exactly what to say to make me feel better. I thought by myself too that he irritates his throat with the food and it can't heal that fast. He eats every three hours and between those meals he drinks water, takes medications, rinses and gargles... So, his throat can never really rest and have time to heal. On January 16th he has another check-up with Rad Onc doctor, so we'll see then. I hope he will have CT this time, because in November they said it was too soon for one due to his throat and mouth still very sore. We have very good doctors in our capital city wher ONC hospital is - their knowledge and education was achieved in UK or US.

Well, yesterday dad said to my husband that for the last 14 days he has a little less pain, but he don't want to brag about it because he is afraid he'll "jinx it" . Then I said that he should tell us when he feels a bit better but he said that it seems to him that every time he got a bit happy about a little improvement, then it got a bit worse again. So he is rather quiet about it or just says it is the same.

Well, thank you again for your opinions and thoughts. You always help me a lot!!!

Our christmas was wonderful. Mom and dad live now in my city and we were able to spend Christmass eve together. We had a nice family dinner: them, my husband and daughter, my parents-in-law. It was great! My little girl was opening Christmass presents in front of our big christmass tree in our living room... It was wonderful family evening. My dad could not eat dinner with us and to tell you the truth I did not even make any "culinary specialties" so that I would not make him said 'cause he can't eat with us. I think this year it was more important we were together than the food we were eating.

 

One Step Forward, Two Steps Back...
Sounds like he is going through the dance we have all stepped a time or two...

Every time I try to get a break
It's unlucky, find myself, center stage
When I think I'm on the right track
I take one step forward and two steps back

Every time I try to get ahead
There's lots a people that are being mislead
That is why what I'm wearing is black
I take one step forward and two steps back

I can't seem to find it, can't even see the trees
Am I hard pressed in the knees?
I struggle for this one, reach out for that
I take one step forward and two steps back

One step forward and two steps back
I take one step forward and two steps back...

Laralyn

VanessaSLO said:

Guys, you always seem to know

Guys, you always seem to know exactly what to say to make me feel better. I thought by myself too that he irritates his throat with the food and it can't heal that fast. He eats every three hours and between those meals he drinks water, takes medications, rinses and gargles... So, his throat can never really rest and have time to heal. On January 16th he has another check-up with Rad Onc doctor, so we'll see then. I hope he will have CT this time, because in November they said it was too soon for one due to his throat and mouth still very sore. We have very good doctors in our capital city wher ONC hospital is - their knowledge and education was achieved in UK or US.

Well, yesterday dad said to my husband that for the last 14 days he has a little less pain, but he don't want to brag about it because he is afraid he'll "jinx it" . Then I said that he should tell us when he feels a bit better but he said that it seems to him that every time he got a bit happy about a little improvement, then it got a bit worse again. So he is rather quiet about it or just says it is the same.

Well, thank you again for your opinions and thoughts. You always help me a lot!!!

Our christmas was wonderful. Mom and dad live now in my city and we were able to spend Christmass eve together. We had a nice family dinner: them, my husband and daughter, my parents-in-law. It was great! My little girl was opening Christmass presents in front of our big christmass tree in our living room... It was wonderful family evening. My dad could not eat dinner with us and to tell you the truth I did not even make any "culinary specialties" so that I would not make him said 'cause he can't eat with us. I think this year it was more important we were together than the food we were eating.

 

My ENT doctor had a great suggestion!

He said that sometimes progress can feel so slow when recovering from H&N cancer treatments that you feel like nothing has changed. He suggests patients write down how they feel once a week, like every Friday. How much pain did you have? How is your swallowing? What were you able to eat, and what can you taste or not taste?

Then every week, after you write up your status, read through previous weeks. You'll start to realize that you ARE getting better--it's just so gradual that you don't notice. Hearing that your dad said he's been feeling a little better reminded me of it. :-)

Glad to hear he's doing better!