Base of Tongue Cancer/Head Neck Cancer
We are both fearful and wondering about the survival rate after treatment.
If anyone can share anything that would be helpful, please do.
Comments
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pennyn14,
My husband went
pennyn14,
My husband went thru this from Dec 29 finishing 7 weeks of radiation/chemo on Feb 22nd. He did not start with surgery but we'll find out this week if that's needed for whatever remains.
They insisted on putting the feeding tube in at the beginning and I was really against it but had not choice. IT WAS A SAVOIR! He started using it after 3 weeks of treatment and I could make certain that his meds, liquids and foods were administered, sometimes with alot of resistance and not always in the amounts I wanted but it was so easy on him to not have to fight to swallow anything.
I won't kid you, there were times when he refused any more liquids and I had to force him to take the food (the VA supplied us with all the liquid nutrition and still does) but the tube made a huge difference!
Even now, he tries to eat at least 1-2 meals a day but takes his pills and other meals thru the tube and he is able to maintain his energy levels and work physically about 70% of his former levels so I think that's great! Although we know that the tube can be a crutch, when it gets too difficult to swallow or his throat starts to swell and bleed he can resort to the tube for 1/2 a day and give his throat a rest.
Not have to swallow all his nutrition and liquids I think really saved him from the pain we hear so much about...Best of luck to you!0 -
Treatments
As to how you survive the treatment, is you just do. I had 10 weekly chemos with 46 (10 weeks less weekends and 4 days for holidays) of radiation. I didn't have the tube during treatments and lost 95 pounds. It was very painful to swallow and toward the end I was having a single glass of gatorade a day. This was all I could get down. Radiation can cause fatigue so the easier it will be to get nutrition in the better.
There is also a rinse called Magic Mouthwash or Magic Mix that numbs you so if he is able to bare the pain to swallow, this might help a bit.
Treatment can be rough, but the alternative to no treatment is much worse.
Keep a positive attitude and a good sense of humor as this helps get through the tough times.0 -
RadiationArtray said:pennyn14,
My husband went
pennyn14,
My husband went thru this from Dec 29 finishing 7 weeks of radiation/chemo on Feb 22nd. He did not start with surgery but we'll find out this week if that's needed for whatever remains.
They insisted on putting the feeding tube in at the beginning and I was really against it but had not choice. IT WAS A SAVOIR! He started using it after 3 weeks of treatment and I could make certain that his meds, liquids and foods were administered, sometimes with alot of resistance and not always in the amounts I wanted but it was so easy on him to not have to fight to swallow anything.
I won't kid you, there were times when he refused any more liquids and I had to force him to take the food (the VA supplied us with all the liquid nutrition and still does) but the tube made a huge difference!
Even now, he tries to eat at least 1-2 meals a day but takes his pills and other meals thru the tube and he is able to maintain his energy levels and work physically about 70% of his former levels so I think that's great! Although we know that the tube can be a crutch, when it gets too difficult to swallow or his throat starts to swell and bleed he can resort to the tube for 1/2 a day and give his throat a rest.
Not have to swallow all his nutrition and liquids I think really saved him from the pain we hear so much about...Best of luck to you!
Thank you Artray for your feedback. Thank the Lord that his is all behind you and someday it will be for my husband too.
We visited the radiation doctor today for the first time and this doctor said my husband probably wouldn't need the feeding tube because they are changing the kind of chemo he will be getting. He even explained that my husband would have a hard time swallowing and would have extreme pain in his mouth because of the radiation. So now I am confused. Confused because they are changing the chemo they had originally planned and confused because this doctor said he wouldn't need a feeding tube. We are still completely overwhelmed especially today with 3 appointments and 2 hours at the radiation doctor.
I have another question. When my husband takes chemo, will he be in a room with other patients receiving chemo? He was wondering that and that is a question we forgot to ask the doctor.
How did your husband and you get through this? I know everyone does, but it must have been so unbearable for your husband.
How long will he continue with the tube?
Thanks again for your reply and if you can think of anything else, please let me know.
Penny0 -
RadiationSASH said:Treatments
As to how you survive the treatment, is you just do. I had 10 weekly chemos with 46 (10 weeks less weekends and 4 days for holidays) of radiation. I didn't have the tube during treatments and lost 95 pounds. It was very painful to swallow and toward the end I was having a single glass of gatorade a day. This was all I could get down. Radiation can cause fatigue so the easier it will be to get nutrition in the better.
There is also a rinse called Magic Mouthwash or Magic Mix that numbs you so if he is able to bare the pain to swallow, this might help a bit.
Treatment can be rough, but the alternative to no treatment is much worse.
Keep a positive attitude and a good sense of humor as this helps get through the tough times.
Thank you Sash for your reply. We saw the radiation doctor today for about 2 hours and he said that my husband now would probably not need a feeding tube. He also told us that they will be giving a different chemo than originally planned and won't be as hard on him. However, he stated as we all know that the radiation will make eating and swallowing very difficult as the weeks go by. My husband is small bone and on the slight side as it is. He lost weight after his neck dissection surgery. I will have to talk to the chemo doctor and ask him about the feeding tube.
How long ago was your chemo and radiation? I know I read your story a while ago, but right now I just can't seem to remember. And how are you doing now? Thank heavens this is all behind you.
The Magic Mouthwash must be a life savior. Is that the pink rinse I have read other people talking about.
We both try to be positive, but we both have our moments.
Thank you again for you comments and let me know if you think of anything else we might need to know.
Penny0 -
Time Framepennynl4 said:Radiation
Thank you Sash for your reply. We saw the radiation doctor today for about 2 hours and he said that my husband now would probably not need a feeding tube. He also told us that they will be giving a different chemo than originally planned and won't be as hard on him. However, he stated as we all know that the radiation will make eating and swallowing very difficult as the weeks go by. My husband is small bone and on the slight side as it is. He lost weight after his neck dissection surgery. I will have to talk to the chemo doctor and ask him about the feeding tube.
How long ago was your chemo and radiation? I know I read your story a while ago, but right now I just can't seem to remember. And how are you doing now? Thank heavens this is all behind you.
The Magic Mouthwash must be a life savior. Is that the pink rinse I have read other people talking about.
We both try to be positive, but we both have our moments.
Thank you again for you comments and let me know if you think of anything else we might need to know.
Penny
Radiation ended Dec 31, 1999 and chemo ended the middle of March of 2000. They were supposed to end around the same time, but because of blood counts, there were weeks that I wasn't able to get my chemo. I had my PEG installed April 20, 2000 so it would be in place for surgery. Surgery was the end of my treatment and that was May 1, 2000. I had the tube removed July 2000 so I was only on it for a short period. I have been NED ever since.
The rinse is a pinkish color so it is probably the same stuff. Just make sure to shake it well as the numbing agent is the lightest ingredient in the mixture. The hospital forgot to put the sticker on my bottles and the first dosage I took I didn't know to shake it so I had straight numbing agent. My entire head was numb for 3 days.0 -
Sash is right
Penny;
Sash is right, you just get through it. I am a four year survivor and I have to say things are just as hard on the care giver as they are the patient. There are many debates on to have on not have a peg. Radiation and Chemo effect people differently so there is no right answer, the key is to have you husband swallow somthing every day. The more he swallows the quicker his recovery will be. In my case I drak one boost a day and got the rest of my nutrition thru the tube. My Dr's gave me some type of morphine base drops that I would put on my tongue to dull the pain. Some days I was able to drink the whole bottle, other days maybe a swallow or two.
You really have to get on your husband to swallow, while he may hate you at the time, the functionality he will have after recovery will depend on it.
Dest of luck
Mar0 -
Radiation and Chemomark10 said:Sash is right
Penny;
Sash is right, you just get through it. I am a four year survivor and I have to say things are just as hard on the care giver as they are the patient. There are many debates on to have on not have a peg. Radiation and Chemo effect people differently so there is no right answer, the key is to have you husband swallow somthing every day. The more he swallows the quicker his recovery will be. In my case I drak one boost a day and got the rest of my nutrition thru the tube. My Dr's gave me some type of morphine base drops that I would put on my tongue to dull the pain. Some days I was able to drink the whole bottle, other days maybe a swallow or two.
You really have to get on your husband to swallow, while he may hate you at the time, the functionality he will have after recovery will depend on it.
Dest of luck
Mar
Thank you Mark for your reply. Now the radiation doctor doesn't think my husband will need a tube because they are giving him a different chemo as first planned. But I thought the tube was because it is hard to eat and swallow when having radiation on the tongue. I have a hard time talking to my husband about the radiation side effects because his gives him more anxiety.
Also, I am wondering how much of the pain does the pain medication take care of?
Please let me know if you can think of anything else or if you can think of some encouragement for my husband.
Thank you and congratulations for being a survivor!!!0 -
i tried the oxycotin andpennynl4 said:Radiation and Chemo
Thank you Mark for your reply. Now the radiation doctor doesn't think my husband will need a tube because they are giving him a different chemo as first planned. But I thought the tube was because it is hard to eat and swallow when having radiation on the tongue. I have a hard time talking to my husband about the radiation side effects because his gives him more anxiety.
Also, I am wondering how much of the pain does the pain medication take care of?
Please let me know if you can think of anything else or if you can think of some encouragement for my husband.
Thank you and congratulations for being a survivor!!!
i tried the oxycotin and fentenal patches and ended up with a morphine ER (extended release) plus liquid Roxicet for break thru pain every 6 hours or so . That was the combo that worked for me i stayed on it till about a month after treatment then i just used the liquid Roxicet which is like a liquid vicodan or percocet and i just cut back gradually on that stuff for a month or so and i didnt have bad pain.
The liquid roxicet 10 ml dumped in my feeding tube worked great for me .
Why anyone would not get a feeding tube is beyond me. Why doctors dont insist on one i cant understand . Just because they are afraid you will stop swallowing? You can keep sipping water as best you can. And with a tube you can get more water and food in you.
And the more water and food you can get in you the better you will feel. When it got bad weeks 3 thru a month after radiation the feeding pump set up was fantastic. Then gravity feeding was easy after that. I made great mixes of stuff Supreme Foods powdered veggies and fruit with flax seed oil and Amplified Muscle Meal from GNC i still am taking a shake these things every day. I am 8 months past treatment and i feel great. I took the Jevity they gave me also during treatment. I thank god for EggNog i was luckey to go thru treatment during eggnog season it strangely was the one thing that tasted decent and it packs on the pounds.
I had a medi port as well for the chemo drugs and got a home nurse to hook up a thing in it so i could put IV fluids in myself during the worst times weeks 5 thru a couple weeks after radiation treatment stopped.
The more water and food i got in the better i felt PERIOD.0 -
Thank you Victor53victor53 said:i tried the oxycotin and
i tried the oxycotin and fentenal patches and ended up with a morphine ER (extended release) plus liquid Roxicet for break thru pain every 6 hours or so . That was the combo that worked for me i stayed on it till about a month after treatment then i just used the liquid Roxicet which is like a liquid vicodan or percocet and i just cut back gradually on that stuff for a month or so and i didnt have bad pain.
The liquid roxicet 10 ml dumped in my feeding tube worked great for me .
Why anyone would not get a feeding tube is beyond me. Why doctors dont insist on one i cant understand . Just because they are afraid you will stop swallowing? You can keep sipping water as best you can. And with a tube you can get more water and food in you.
And the more water and food you can get in you the better you will feel. When it got bad weeks 3 thru a month after radiation the feeding pump set up was fantastic. Then gravity feeding was easy after that. I made great mixes of stuff Supreme Foods powdered veggies and fruit with flax seed oil and Amplified Muscle Meal from GNC i still am taking a shake these things every day. I am 8 months past treatment and i feel great. I took the Jevity they gave me also during treatment. I thank god for EggNog i was luckey to go thru treatment during eggnog season it strangely was the one thing that tasted decent and it packs on the pounds.
I had a medi port as well for the chemo drugs and got a home nurse to hook up a thing in it so i could put IV fluids in myself during the worst times weeks 5 thru a couple weeks after radiation treatment stopped.
The more water and food i got in the better i felt PERIOD.
Thanks for all the info. I need to copy and paste everyone's suggestions and comments in a file so I can get it all together.
I will be talking to the doctors again before treatment starts. He just had a port put in a couple of days ago. I know tubes are put in the same time.
Was your pain mostly gone with your pain medication? That's want my husband is afraid of....not enough pain control. He is very nervous about the treatments. I am afraid too for him and trying to get through this.
I am happy for you that you are over your treatment. You must feel like a million bucks!!
How much care does a feeding tube take and does a nurse come in very often?
Thanks again and God Bless!
Penny0 -
With the morphine and thepennynl4 said:Thank you Victor53
Thanks for all the info. I need to copy and paste everyone's suggestions and comments in a file so I can get it all together.
I will be talking to the doctors again before treatment starts. He just had a port put in a couple of days ago. I know tubes are put in the same time.
Was your pain mostly gone with your pain medication? That's want my husband is afraid of....not enough pain control. He is very nervous about the treatments. I am afraid too for him and trying to get through this.
I am happy for you that you are over your treatment. You must feel like a million bucks!!
How much care does a feeding tube take and does a nurse come in very often?
Thanks again and God Bless!
Penny
With the morphine and the Roxicet i had no pain. I think they over do the care needed on the tube. I just washed with Cetaphil soap.
Having the attachment IV thing in my port for the real bad weeks 5 thru a couple weeks after was delicate. I dont read about other people who have done there own IV fluids like I did but i wanted as much fluid as i could get. But the peg tube didnt bother me in the slightest. I actually kept putting of getting it out . Not i have to drink my protien supplement shakes. It was easy just to dump them down the tube. Cetaphil soap and neosporin on the tube and i never had a problem. I just shower as normal.
I did 2 months of induction chemo then 7 weeks of radiaton with chemo everyday on weeks 1,4,7 with double radiaton on fridays.
Used the feeding tube after 2 week of radiation. I have a 3 year old son so i was up an moving around all day.
I heavily medicated myself kicking the meds wasnt to bad . I read alot about people afraid of the pain meds.
I think it really comes down to getting as much food and water into you. The more food and water you can get in the better you feel.0 -
Penny, Sorry for the delay,victor53 said:With the morphine and the
With the morphine and the Roxicet i had no pain. I think they over do the care needed on the tube. I just washed with Cetaphil soap.
Having the attachment IV thing in my port for the real bad weeks 5 thru a couple weeks after was delicate. I dont read about other people who have done there own IV fluids like I did but i wanted as much fluid as i could get. But the peg tube didnt bother me in the slightest. I actually kept putting of getting it out . Not i have to drink my protien supplement shakes. It was easy just to dump them down the tube. Cetaphil soap and neosporin on the tube and i never had a problem. I just shower as normal.
I did 2 months of induction chemo then 7 weeks of radiaton with chemo everyday on weeks 1,4,7 with double radiaton on fridays.
Used the feeding tube after 2 week of radiation. I have a 3 year old son so i was up an moving around all day.
I heavily medicated myself kicking the meds wasnt to bad . I read alot about people afraid of the pain meds.
I think it really comes down to getting as much food and water into you. The more food and water you can get in the better you feel.
Penny, Sorry for the delay, my husband was reading the boards and said' you have to reply to this lady!'
The feeding tube was insisted on by the drs and we still have it after 4 mos after radiation. Although he is now eating a couple of meals a day, we have tons of food that they gave us for tube feeding and when he's really tired or in a rush it's a sure way to get a really balanced meal (REALLY balanced) quickly.
Throughout the treatments, MY husband refused all pain meds as they really don't do well with his system. He took tylenol, thru the tube, daily but that was all. A couple of times I slipped him so morphine with the others meds but he just got headaches or really really groggy so it wasn't a good move.
I can't imagine, now that we're on the other side of it, how drs feel it's ok for you to just fight thru this with minimal sustenance knowing that the pain of swallowing stops the patient from getting any good nutrition OR liquids. At least, even when he was in the deepest symptoms of the treatments it was pretty easy to get the meds (crushed pills in liquid) and water into him at all hours of the day and night. I was waking up at every 4 hours to make sure he got his meds and if I had to force him to try to swallow we would've been out of luck!
Also, the type of chemo, I don't think, effects the swallowing like the radiation so I don't understand why that would make a difference. Even now, after 4 months, the outside skin of his neck still bothers him from time to time, can't imagine what the inside of the throat is like. So to not try to make it easier to consume liquids and nutrition makes no sense...tell the Dr's that your boardmates INSIST on a tube!!!
Otherwise, like it's been said before, we do the best we can and get thru it. I had no idea this board existed when we were going thru it and I just plodded along praying that there would be some light at the end of this really dark tunnel...and believe it there is! I know that what you're going thru is scary and incredibly unimaginable but for me, having gone thru it and knowing what we know now...the course was the best it could be...just stand your ground and DO NOT let them ride over you...you know what's best in your heart and gut so go with that!
You have our support...0 -
Thanks Victorvictor53 said:With the morphine and the
With the morphine and the Roxicet i had no pain. I think they over do the care needed on the tube. I just washed with Cetaphil soap.
Having the attachment IV thing in my port for the real bad weeks 5 thru a couple weeks after was delicate. I dont read about other people who have done there own IV fluids like I did but i wanted as much fluid as i could get. But the peg tube didnt bother me in the slightest. I actually kept putting of getting it out . Not i have to drink my protien supplement shakes. It was easy just to dump them down the tube. Cetaphil soap and neosporin on the tube and i never had a problem. I just shower as normal.
I did 2 months of induction chemo then 7 weeks of radiaton with chemo everyday on weeks 1,4,7 with double radiaton on fridays.
Used the feeding tube after 2 week of radiation. I have a 3 year old son so i was up an moving around all day.
I heavily medicated myself kicking the meds wasnt to bad . I read alot about people afraid of the pain meds.
I think it really comes down to getting as much food and water into you. The more food and water you can get in the better you feel.
Victor, again thank you for answering my questions. So it sounds like you were able to eat the first couple of weeks but not after. Even tho the chemo doctor originally said my husband would have a feeding tube, he didn't schedule to have it put in at the same time as the port.
I will be talking to the doctors again before chemo and radiation. I hope I don't have a problem convincing them a feeding tube is needed. My husband is slight build as it is.0 -
Artray, Thank youArtray said:Penny, Sorry for the delay,
Penny, Sorry for the delay, my husband was reading the boards and said' you have to reply to this lady!'
The feeding tube was insisted on by the drs and we still have it after 4 mos after radiation. Although he is now eating a couple of meals a day, we have tons of food that they gave us for tube feeding and when he's really tired or in a rush it's a sure way to get a really balanced meal (REALLY balanced) quickly.
Throughout the treatments, MY husband refused all pain meds as they really don't do well with his system. He took tylenol, thru the tube, daily but that was all. A couple of times I slipped him so morphine with the others meds but he just got headaches or really really groggy so it wasn't a good move.
I can't imagine, now that we're on the other side of it, how drs feel it's ok for you to just fight thru this with minimal sustenance knowing that the pain of swallowing stops the patient from getting any good nutrition OR liquids. At least, even when he was in the deepest symptoms of the treatments it was pretty easy to get the meds (crushed pills in liquid) and water into him at all hours of the day and night. I was waking up at every 4 hours to make sure he got his meds and if I had to force him to try to swallow we would've been out of luck!
Also, the type of chemo, I don't think, effects the swallowing like the radiation so I don't understand why that would make a difference. Even now, after 4 months, the outside skin of his neck still bothers him from time to time, can't imagine what the inside of the throat is like. So to not try to make it easier to consume liquids and nutrition makes no sense...tell the Dr's that your boardmates INSIST on a tube!!!
Otherwise, like it's been said before, we do the best we can and get thru it. I had no idea this board existed when we were going thru it and I just plodded along praying that there would be some light at the end of this really dark tunnel...and believe it there is! I know that what you're going thru is scary and incredibly unimaginable but for me, having gone thru it and knowing what we know now...the course was the best it could be...just stand your ground and DO NOT let them ride over you...you know what's best in your heart and gut so go with that!
You have our support...
Artray, thank you for getting back to me. All the information I can get will help my husband and me get through this. I know it makes no sense to do this without a feeding tube. I don't want some secondary problem because there was no tube. I will talk to both the chemo doctor (who originally recommended it) and the radiation docotr (who said he wouldn't neeed it) and plead his case.
I keep coming up with more question. How soon after the chemo and radiation will my husband need paid meds. We had a long weekend trip planned before this all came up and he doesn't want to go. It is the the weekend of the first week when the treatments start. He would have only had one chemo treatment and maybe two or three radiation treatments. Will he even feel like going anywhere......it's a 5 hour drive and he was going to drive if he felt like it. He now just wants to stay home and not go. I have told him it might be good for him because for 7 weeks he will be doing radiation and won't be doing much of anything.
I just happend to stumbele on this site when I was looking up head and neck cancer. I think is is great to get first hand information form everyone.
Thanks for all your support Artray and everyone else who has commented and shared their story.
God Bless all of you.
Penny0 -
Pennyn14,pennynl4 said:Artray, Thank you
Artray, thank you for getting back to me. All the information I can get will help my husband and me get through this. I know it makes no sense to do this without a feeding tube. I don't want some secondary problem because there was no tube. I will talk to both the chemo doctor (who originally recommended it) and the radiation docotr (who said he wouldn't neeed it) and plead his case.
I keep coming up with more question. How soon after the chemo and radiation will my husband need paid meds. We had a long weekend trip planned before this all came up and he doesn't want to go. It is the the weekend of the first week when the treatments start. He would have only had one chemo treatment and maybe two or three radiation treatments. Will he even feel like going anywhere......it's a 5 hour drive and he was going to drive if he felt like it. He now just wants to stay home and not go. I have told him it might be good for him because for 7 weeks he will be doing radiation and won't be doing much of anything.
I just happend to stumbele on this site when I was looking up head and neck cancer. I think is is great to get first hand information form everyone.
Thanks for all your support Artray and everyone else who has commented and shared their story.
God Bless all of you.
Penny
GO, GO, GO! on
Pennyn14,
GO, GO, GO! on your getaway as it will be awesome for the both of you!
We started treatment on 12/29 (feeding tube inserted, chemo and radiation began) and he got
7 weeks of daily radiation with 3 chemo session. Around the 3rd weekend in January we were able to leave town for the holiday weekend and go to our second home in Vegas. That was the weekend he stopped eating as it became just too hard for him to swallow but we did go see a show Sat nite and he was really feeling fine. The next week he had his second chemo session and from then on it was downhill but the first couple of weeks he did really great!
The one good thing about doing the daily radiation is it got him out of the house every day and I would push him to do errands with me as long as he was still feeling well enough. I believe that if you let them just lounge on the couch they'll wallow in sympathy and there's no time for that!
So, go on your trip and just make sure you can help with the driving. That was the biggest thing for us as my husband ALWAYS does all the driving (he loves it!) and from this trip on he started relinquishing the wheel to me when he started feeling drowsy...and that was no problem at all!
As for this site, I only wish I had found it when we were starting out as it would've given me alot of solace. I just talked to someone who's starting treatment (her husband is) for esopagheal cancer and I sent her to these boards.
Good luck, Penny
What's the next question?
Jeani (wife of ArtRay!)0 -
Thanks JeaniArtray said:Pennyn14,
GO, GO, GO! on
Pennyn14,
GO, GO, GO! on your getaway as it will be awesome for the both of you!
We started treatment on 12/29 (feeding tube inserted, chemo and radiation began) and he got
7 weeks of daily radiation with 3 chemo session. Around the 3rd weekend in January we were able to leave town for the holiday weekend and go to our second home in Vegas. That was the weekend he stopped eating as it became just too hard for him to swallow but we did go see a show Sat nite and he was really feeling fine. The next week he had his second chemo session and from then on it was downhill but the first couple of weeks he did really great!
The one good thing about doing the daily radiation is it got him out of the house every day and I would push him to do errands with me as long as he was still feeling well enough. I believe that if you let them just lounge on the couch they'll wallow in sympathy and there's no time for that!
So, go on your trip and just make sure you can help with the driving. That was the biggest thing for us as my husband ALWAYS does all the driving (he loves it!) and from this trip on he started relinquishing the wheel to me when he started feeling drowsy...and that was no problem at all!
As for this site, I only wish I had found it when we were starting out as it would've given me alot of solace. I just talked to someone who's starting treatment (her husband is) for esopagheal cancer and I sent her to these boards.
Good luck, Penny
What's the next question?
Jeani (wife of ArtRay!)
Thank you Jeani for answering all my questions. It's the not knowing that is so frightful. My husband hasn't gotten on this site at all. It has helped me so much.....knowlege and information is power!! He is depressed as it is and I think he might get more depressed if he hears how really bad it can get.
We will try and go on this weekend trip to Seattle (we live in Spokane and taking our daughter and a friend to a concert and going to a graduation party). Hopefully he will fine and I think it will be good for him.
MY NEXT QUESTION......How did you know I had more? Ha Ha!!! How was the recovery when your husband had the feeding tube put in? My husband had the port put in last week....wish the feeding tube could have gone in at the same time.
Also, they say cancer patients shouldn't be around crowds. We have his sister's graduation party to go to and a little concerned.
I think that's all I can think of at this time. Thanks again and good luck to you both.
Penny0 -
Feeding tube
Hi Penny,
I can't imagine why his doctor said a feeding tube was unesscessary. If it wasn't for the tube, I wouldn't be here today. I could not get any food and not much liquid down. I was hardheaded at first and didn't have the tube installed. After about three weeks of chemo and radiation, I had to have one installed. The next day, I ended up with a one week hospital stay because of my weakened condition. By all means, encourage your husband to have the tube.
After my 11th radiation treatment, I was very close to calling it quits. You learn to persevere. It beats the alternative.
Radiation though, is the g i f t that keeps on giving. Toward the end of 2004, I was feeling great, eating and working. That is until the after effects of radiation reared their ugly head.
My neck started getting rock hard and swallowing became more difficult after about a year and a half after the treatments. For the past two years, I have had monthly esophageal dilations to keep my esophagus open. I recently completed 80 hyperbaric oxygen chamber treatments which has softened my neck tissue quite a bit. My gastroenterologist says it is much easier to dilate me now so, hopefully, I won't have to go as often.
Encourage your husband to hang in there. It will get worse before it gets better but he can beat it.
P.S. I had to put spaces in the word g i f t, otherwise it comes out like this - gift. I didn't want you to think I was cussing at you
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want to connect with you all.pennynl4 said:Thanks Victor
Victor, again thank you for answering my questions. So it sounds like you were able to eat the first couple of weeks but not after. Even tho the chemo doctor originally said my husband would have a feeding tube, he didn't schedule to have it put in at the same time as the port.
I will be talking to the doctors again before chemo and radiation. I hope I don't have a problem convincing them a feeding tube is needed. My husband is slight build as it is.
Just got diagnosed Fri.06/19, and just found this site and joined. All of you have helped so much. It is very scary but I've got to do what I've got to do. I'll try to get on here as I and my wife,Ruth, need all the help and info we can get. Thanks To All.0 -
Here for you GrampyJohn oldtmr said:want to connect with you all.
Just got diagnosed Fri.06/19, and just found this site and joined. All of you have helped so much. It is very scary but I've got to do what I've got to do. I'll try to get on here as I and my wife,Ruth, need all the help and info we can get. Thanks To All.
Thank God there is a site out there to encourage my evil step-Daddy-O who was just diagnosed (John oldtmr), and my Mom......and the rest of us who love him and worry about him.
As an RA patient with MANY doctors, I have found that if you don't click with a doctor, or disagree with something he is telling you, changing doctors may be the best course of action. Often doctors will have one course of treatment they like and that is that. As I learned recently through a pain management doctor who put me through multiple PAINFUL spinal-epidural injections NEEDLESSLY. I switched to a different doctor in her practice, and now I have control of my pain. Please remember that doctors are human. It sounds to me like a feeding tube is the way to go.
I also want to encourage anyone afraid of pain medication. All narcotics are addictive, however, if taken as prescribed, and weaned carefully, there is no need to worry. There are also several medications to combat nausea from meds, whether chemo or pain.
God bless you all, and especially you Grampy. We're here for you!0 -
Husband and Base of Tongue Cancer
My husband went in for what we thought was a routine surgery to have a cyst removed from his neck. This was on April 3rd 2009. When they opened him up his lymph node was full of squamish cell cancer. We have been through 7 weeks of radiation and 6 chemo treatments. We are not post treatment and will not know anything until the end of the 3 months when they are able to take a pet scan. Has anyone here had any experience with this?0
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