Hello, can anyone here give me some real information on how long it takes to feel somewhat better after you finish chemotherapy and radiation? My father has Stage IV tongue/lymph/neck cancer and he finished his radiation and chemo over a month ago, but he's not feeling well enough to eat yet (he's on a stomach tube.) He is so frustrated at not really having any improvement in how his mouth feels, and further, by the non-answers he keeps receiving. Everyone just says that "Everyone's different," and that it "takes time" to heal. Well, how much time? Is it normal for his mouth to still be so toxic? It tastes and feels terrible, no food tastes good in the slightest (tastes nasty), he's still in pain and he's spitting up mucous/throat lining. He had an initial improvement for maybe a week but now he's been at the same level for over a month, no improvement day-to-day. He's in swallow therapy and does mouth exercises to keep everything working, but he's so frustrated at not feeling better. He knows he won't feel totally better right now, but it would be nice to see SOME improvement, anything. Is this "normal?" He doesn't think he'll ever feel good again, he's so tired of the ordeal. He's waiting to feel good enough to eat normally, and he thinks that once he starts eating real food, he'll gain more strength. But it's a Catch-22 - he won't feel better until he eats, but he won't eat until he feels better. Does anyone have any information or advice? Thank you so much.

Hi BetterDays,

There's a lot of posts on this support group about the exact thing your father is going through. It seems though that everyone is different and on their own schedule. I do hope that you can find some information to help you with your Dad.

You have found yourself a very supportive group here and maybe you can get your Dad to join up also.

I'm not quite half way through my treatment, and I can't wait until the day that I can start tasting food and feel like eating again. I've already lost 11 pounds and just know my doctor is going to insist on a feeding tube soon. In fact my husband & I were just talking about it tonight. Unfortunately we both agreed that it will take some time after treatments are over before there's going to be any improvement.

I hope things work out well for him, and please keep us informed on how he's progressing,

Cricket

Hi BetterDays,
My name is Ananth. I had cancer and went through the radiation and chemo also. However, it is true that everyone reacts in a different manner and thats a fact one has to accept.
However, the fact at the moment is that your Dad is on Peg feed, which I have been on for the last eight years. I have not had anything orally in all these years and all my food is sent in through my Peg tube. In the first instance - why is he hesitant to be fed through the pegtube? In fact he can mantain his weight and strength the way he wants to if he decides to do so and accepting food through the peg - till such time he can eat. A lot of people on the peg are under the wrong idea that only certain foods should be given (Ensure etc.). This, however, I have found you can give him anything by pureeing it well with milk or water and then straining it. You could even give him a pizza, like I get one once in a way; you can give him a cup of tea, coffee or even a coke. However, it does not mean he is going to get strong on these feeds - you can try soups of his choice, with plenty of vitamins. Fresh Juice, Milkshakes are a great way to put on weight.
You could ask him if he would like to try this and once or if he says yes - there wont be any looking back and he will be well on his way to a great recovery.
You are welcome to ask me anything and I shall try respond to the best of my ability.
Regards,
Ananth

Hi Betterdays,

I am just over 3 weeks post treatment and can empathize with you Dad's frustration. BUT I have accepted that "everyone is different" and that it could take along time to recover. I have been recovering at my Aunts and have been away from my children for over 3 weeks, but feel well enough to go home soon so Thursday I move home and will spend the weekend with the boys (YAY!) and then look to getting back to normal with them over the next few weeks.

My throat still really hurts 3 weeks later - I spoke to a speach therapist last week and yes - after what my throat has been put through this is normal. When I have licked sweet stuff (ensure) off my finger I can taste it sweetness - but frustratingly can't swallow it (I tried swallowing spoonfuls last week - it got stuck in my throat and came back up with the mucus). The muscus is alot better than what it was the first week when I could have died as I hated it so much.

Tell your Dad to hang in there - we will get better (hopefully just in time to enjoy summer!).

Love Chloex

Your dad had exactly the same as my husband. During his R/t he found he couldn’t swallow and was fitted with a tube that went up his nose and into his stomach. If he attempted to eat it tasted vile and usually came back down his nose so didn’t try anything for several months and then only at the behest of the dietician, started taking sips of water. Previous to having the tube fitted, he had lost about 86 pounds from when started to feel unwell but was able to stabilise his weight with ‘fortisip’ which I don’t know if you have in the states, it has all the nutrients and calories required to maintain weight. He also had as many Ensure as I could make him have during the day. When I say I, I just did the nagging, he managed all his feeds and all his medication himself. I am sorry to tell you that that went on for about five months. He only had his tube out when he was forced too. I am sure he thought of it as a safety blanket for maintaining his weight and that if he lost any more he would have much less chance of surviving (probably right)!

After he had had a clear scan in January, he seemed to become very morose when I thought he should have been on top of the world. As you say we are not told what to expect but being part of this group, I was aware that things would take time. Bill only ever wanted to be informed about the positives and didn’t want to hear the what if’s, which, I am sure kept him very focused and was one of the reasons I think he has come through. I do however, feel he should have been informed that it would take as long as it has then would not have been so disappointed when the treatment was finished and he wasn’t getting back to normal.

It is unbelievable that one year ago we were in middle of the roller coaster ride, holding on literally for dear life. Here we are, although not back to normal, energy level are low and Bill eats soft foods and sips water all the time – as well as needing a whole new wardrobe.

Although everyone is different and their recovery rate is different, this site will tell you that it does take along time, so encourage your dad to stay with it, don’t let his guard slip and stay focused, he has come along way and has done well. I hope things get better for him and you, which I am sure they will.

I didn't start eating until 3 months after treatment & i can empathise with your dads frustrations.
I felt at times that i would never eat again! That i was doomed to exist on feeds through my stomach tube.
But slowly and gradualy i turned a corner.
For me, switching to an over-night pump feed worked better than syringe feeding. & once i got the balance right - getting enough calories through the night - slowly but surely my sores began to heal.
The first foods i tryed were creamy soft food (custard, ice cream melted down, rice pudding, milk shakes All washed down with plenty of water to stop it sticking).
Assure your dad that no matter how low he feels now, even when he can't see the light at the end of the tunnel, he WILL feel better eventualy.
& even now, 18months since the end of treatment, i'm still discovering things i can eat again.

All the best,
Michelle

i know this might sem a bit of a dumb question but could someone tell me why it is so hard for some people to eat during treatment and why do some people need a peg. is it just because of side affects or is it due to surgery too. i havent had surgery to my mouth but on my parotid gland and have just started RT.

love christine xx

hi christine
for me it has taken a long time.no taste buds and not much saliva,drs tell me everyone is different.i am eating a bit more these days but still have to rely on the peg feed.i thank god for the peg,much better than the n.g tube.i cant tell you how long it will take your dad to get some normality back in his life.it is frustrating for him i know but over a period of time these do improve slowly.all the best to him.shirl xxx

Hello!

Know that this isn't what you want to hear again, but unfortunately it's true; everyone is different and it takes time to heal. How long? Well, I'm a little over 9 weeks out after rads (stage 2 tonsil cancer, no node involvement, no chemo, no surgery) and am doing fine, whereas one of our most active (and endearing) members has had his feeding tube in place for eight years with no promise of ever discarding it despite his continued good medical care, attitude and support system (I see he's already posted). Your dad might be somewhere in between but at this point it's impossible to know where that is precisely. Because of his age he may also take longer to heal than our younger board members.

He isn't being given non-answers - he's being told the truth. They simply don't know. Our docs aren't politicians making unfound promises - be glad he's being given the 'non-answers' rather than empty words and promises just to placate him. Mouth and neck cancer is particularly devastating and the outcome of stage four cancer with his complications, although very treatable, is still difficult to predict. Read the Survivor Stories threads for some amazing and poignant recovery stories, but remember that not all of us recover. I nearly had to be hit over the head to realize and accept that. Cancer does teach humility.

We get lots of information on this board, far more than I ever got at my docs' offices or at the rad center. Here we get anecdotal information, one person passing his/her experience to the rest of us; we click with the experiences of some people and not with others. The docs gather all the information and provide statistics that run the gamut, not just what Mimi or Haag or Ananth or Chelle experienced individually; each experience being totally different.

I think if you read through the threads on this board and relay them or read them aloud to your dad that you both might have a better understanding of what this healing process is like and recognize that it can be a very long slow process and that he will never be his old 'normal' again. At some point he'll establish what we call a 'new normal,' but that's still in his future. New normal, by the way, can be just fine. This is my second bout with cancer (my previous cancer is unrelated to this one) and I think it took close to a year to get to whatever that normal was. With this cancer my mouth is fine but I'm battling fatigue, but even that is slowly diminishing. Very slowly.

I think Angiebaby wrote a terrific response, particularly the last paragraph. Please stress that to your dad.

My best to both of you. Cancer, like old age, ain't for sissies.

Hi Ananth,
I really appreciate you taking the time to write. I'm sorry you've been on a tube for so long. Well, we joke about putting gin in Dad's stomach tube, but the truth is he just wants to be "normal" health again in general, so pureeing pizza and putting it through his tube isn't really want he wants. He's afraid to put anything other than his Ensure shakes through his tube, because he doesn't want to dirty or clog the tube. (Yes, he flushes with water, but still...) Do you find tube maintenance a problem? He had a complication with it that hospitalized him for a week, so he's very wary -- and understandably so, I think -- of messing with it. Thanks again for writing and good luck to you.

quote:

Originally posted by ANANTH:
Hi BetterDays,
My name is Ananth. I had cancer and went through the radiation and chemo also. However, it is true that everyone reacts in a different manner and thats a fact one has to accept.
However, the fact at the moment is that your Dad is on Peg feed, which I have been on for the last eight years. I have not had anything orally in all these years and all my food is sent in through my Peg tube. In the first instance - why is he hesitant to be fed through the pegtube? In fact he can mantain his weight and strength the way he wants to if he decides to do so and accepting food through the peg - till such time he can eat. A lot of people on the peg are under the wrong idea that only certain foods should be given (Ensure etc.). This, however, I have found you can give him anything by pureeing it well with milk or water and then straining it. You could even give him a pizza, like I get one once in a way; you can give him a cup of tea, coffee or even a coke. However, it does not mean he is going to get strong on these feeds - you can try soups of his choice, with plenty of vitamins. Fresh Juice, Milkshakes are a great way to put on weight.
You could ask him if he would like to try this and once or if he says yes - there wont be any looking back and he will be well on his way to a great recovery.
You are welcome to ask me anything and I shall try respond to the best of my ability.
Regards,
Ananth

Hi Cricket,
Thank you for writing, so sorry to hear you're going through this as well. Although I do not have cancer myself, I'm pretty close to the situation, if you don't mind some information from me. As far as a feeding tube, it's up to you, not your doctor, as to whether you want one, and the reason you might want one is that swallowing becomes too painful and so you'd be at risk of losing even more weight, and deyhdration, if you stopped eating and drinking. From what I've seen and heard, a lot of people try to tough it out, but end up not making it. There's just no way to tell how painful it's going to be, or what each individual's tolerance for that pain is going to be. The doctors said it's easier to put the tube in before you get too sick from the other treatments. And it can turn very quickly, from being OK to swallow one day and then not, later that day, even. If/when that happens, you've got at least a week or 2 of the process of putting the tube in. You can't go without nutrition all that time. Congrats on having your treatment halfway behind you! Things WILL get better, I've seen the other side. Dad isn't "up to speed" yet, but he's doing better than he was in the thick of it. Good luck to you.

quote:

Originally posted by Cricket:
Hi BetterDays,

There's a lot of posts on this support group about the exact thing your father is going through. It seems though that everyone is different and on their own schedule. I do hope that you can find some information to help you with your Dad.

You have found yourself a very supportive group here and maybe you can get your Dad to join up also.

I'm not quite half way through my treatment, and I can't wait until the day that I can start tasting food and feel like eating again. I've already lost 11 pounds and just know my doctor is going to insist on a feeding tube soon. In fact my husband & I were just talking about it tonight. Unfortunately we both agreed that it will take some time after treatments are over before there's going to be any improvement.

I hope things work out well for him, and please keep us informed on how he's progressing,

Cricket

Hi Chloe,
Thank you for writing. I'm so glad your treatment is behind you. It sounds like you're making good progress, but I understand your frustrations. I hope you continue to improve and have fun with your boys. It can get tiring, though, as I'm sure you know, so please get your rest too!

quote:

Originally posted by PurpleKitten:
Hi Betterdays,

I am just over 3 weeks post treatment and can empathize with you Dad's frustration. BUT I have accepted that "everyone is different" and that it could take along time to recover. I have been recovering at my Aunts and have been away from my children for over 3 weeks, but feel well enough to go home soon so Thursday I move home and will spend the weekend with the boys (YAY!) and then look to getting back to normal with them over the next few weeks.

My throat still really hurts 3 weeks later - I spoke to a speach therapist last week and yes - after what my throat has been put through this is normal. When I have licked sweet stuff (ensure) off my finger I can taste it sweetness - but frustratingly can't swallow it (I tried swallowing spoonfuls last week - it got stuck in my throat and came back up with the mucus). The muscus is alot better than what it was the first week when I could have died as I hated it so much.

Tell your Dad to hang in there - we will get better (hopefully just in time to enjoy summer!).

Love Chloex

Hi Angiebaby,
I'm sorry to hear about your husband's ordeal and that the recovery has been so slow. It sounds like it's moving in the right direction, however. I'm glad to hear the time reference - obviously my Dad doesn't want to take 5 months to feel somewhat better, but to know you can make progress after such a long time is encouraging. It's horrible how it takes over your life. A rollercoaster ride, for sure, and a whole year spent in hell. Best of luck to him, I hope he continues to improve.

quote:

Originally posted by angiebaby:
Your dad had exactly the same as my husband. During his R/t he found he couldn’t swallow and was fitted with a tube that went up his nose and into his stomach. If he attempted to eat it tasted vile and usually came back down his nose so didn’t try anything for several months and then only at the behest of the dietician, started taking sips of water. Previous to having the tube fitted, he had lost about 86 pounds from when started to feel unwell but was able to stabilise his weight with ‘fortisip’ which I don’t know if you have in the states, it has all the nutrients and calories required to maintain weight. He also had as many Ensure as I could make him have during the day. When I say I, I just did the nagging, he managed all his feeds and all his medication himself. I am sorry to tell you that that went on for about five months. He only had his tube out when he was forced too. I am sure he thought of it as a safety blanket for maintaining his weight and that if he lost any more he would have much less chance of surviving (probably right)!

After he had had a clear scan in January, he seemed to become very morose when I thought he should have been on top of the world. As you say we are not told what to expect but being part of this group, I was aware that things would take time. Bill only ever wanted to be informed about the positives and didn’t want to hear the what if’s, which, I am sure kept him very focused and was one of the reasons I think he has come through. I do however, feel he should have been informed that it would take as long as it has then would not have been so disappointed when the treatment was finished and he wasn’t getting back to normal.

It is unbelievable that one year ago we were in middle of the roller coaster ride, holding on literally for dear life. Here we are, although not back to normal, energy level are low and Bill eats soft foods and sips water all the time – as well as needing a whole new wardrobe.

Although everyone is different and their recovery rate is different, this site will tell you that it does take along time, so encourage your dad to stay with it, don’t let his guard slip and stay focused, he has come along way and has done well. I hope things get better for him and you, which I am sure they will.

Hi Michelle,
Your post was so helpful, thank you for writing. Yes, it certainly is hard to remember that there even IS a light at the end of the tunnel when you can't even see a glimmer. It's nice to hear from someone on the other side. Hope you have many culinary adventures in your future. Good luck

quote:

Originally posted by Chelle:
I didn't start eating until 3 months after treatment & i can empathise with your dads frustrations.
I felt at times that i would never eat again! That i was doomed to exist on feeds through my stomach tube.
But slowly and gradualy i turned a corner.
For me, switching to an over-night pump feed worked better than syringe feeding. & once i got the balance right - getting enough calories through the night - slowly but surely my sores began to heal.
The first foods i tryed were creamy soft food (custard, ice cream melted down, rice pudding, milk shakes All washed down with plenty of water to stop it sticking).
Assure your dad that no matter how low he feels now, even when he can't see the light at the end of the tunnel, he WILL feel better eventualy.
& even now, 18months since the end of treatment, i'm still discovering things i can eat again.

All the best,
Michelle

Hi Christine,
Thank you for sharing, and hang in there. From what I've read, everything DOES come back, it can just take awhile. The posts on here for my Dad sound like they might be encouraging to you, too. Take care.

quote:

Originally posted by shirl:
hi christine
for me it has taken a long time.no taste buds and not much saliva,drs tell me everyone is different.i am eating a bit more these days but still have to rely on the peg feed.i thank god for the peg,much better than the n.g tube.i cant tell you how long it will take your dad to get some normality back in his life.it is frustrating for him i know but over a period of time these do improve slowly.all the best to him.shirl xxx