Base of Tongue Cancer/Head Neck Cancer

DennisK7BV

My experience...hope it helps
I kept a blog through my entire base of the tongue throat cancer experience. I hope it might offer some help for you with your many many questions.

http://k7bvcancer.blogspot.com/

My best wishes,
Dennis

Skiffin16

DennisK7BV said:

My experience...hope it helps
I kept a blog through my entire base of the tongue throat cancer experience. I hope it might offer some help for you with your many many questions.

http://k7bvcancer.blogspot.com/

My best wishes,
Dennis

Welcome
Welcome to the forum Dennis.....

A lot of great people here and tons of history and experience....

Good job on the blog....I haven't read it all, but plan to.

This might be something worthy of the SuperThread that Sweetblood (Dawn) has put together.

Best,
John

yangkwei

Lynlls said:

treatment
I so sorry you have to go through this. My husband had the same time of base of tongue and lymph node cancer. His treatment was finished about five months ago. He had chemo once a week and radiation six times a week twice on friday for six weeks. The cancer center insisted he have the feeding tube placed before the treatment began also he had a dietitian and a speech therapist right from the start. The speech therapist is the swallowing person to help with keeping the swallowing muscles active.
My husband only lost 20 pounds and the feeding tube saved his life, it is easier (explained to us) to have he tube put in before radiation starts because the tube is placed down your throat. I am sorry to say that every cancer patient is different how they heal and the stage of the cancer effects the recovery.

I am happy to report that the cancer on the tongue is gone and he had a neck disection of lymph nodes removeing 42 of them there was no cancer in the nodes but it showed where it was at. But he still can't eat like befoe he gets 6 cans of liquid food through the tube still, but he can eat a little yogurt or ice cream bar, liquid soup. This takes a lot of time to heal his esophagus is still swollen. He will be going to the ENT doctor they may stretch his throat to help him better I just don't know. He also will have a PT scan next month. He had a PT scan before treatment began and it showed the only area the cancer was in was the the two places.

He is driving the car and talks well. he has constant dry mouth but the pain in is tongue is gone. He still has a problem with mucus but not as much. This really is a one day at a time situation. You will see a lot of brave people going through a lot of different cancers old and young. It makes you brave enough to go through the treatment to see the bravery of others. You talk to them, we had a man going through the same type of cancer we talked to him when we were getting treatments. We saw the docs everyday while treatment was going on or their nurses to ask any questions we needed. Blessings to you keep up the fight.

dry mouth
completed radiation and chemo for bot squamous cell 1 1/2 years ago. going through extreme dry mouth now. cannot talk at times. any suggestions?

oceancaydream

Skiffin16 said:

Welcome
Welcome to the forum Dennis.....

A lot of great people here and tons of history and experience....

Good job on the blog....I haven't read it all, but plan to.

This might be something worthy of the SuperThread that Sweetblood (Dawn) has put together.

Best,
John

Still can't swallow
I'm not even sure where to begin in this story of my husbands Stage IV high grade 4 Undifferentiated Large Cell Neuroendocrine throat cancer of the back of the throat. MANY Lymph nodes were involved on both sides with extensive necrosis. Neuroendocrine histology is very rare in the throat so i am told. Not much data to support methodology.
He went the 8 weeks 5 times a week of radiation which was hell and 4 out of the 6 weeks of chemo. (His blood values were so bad he couldn't do 2 of the 6 scheduled rounds of chemo)
It's been 3 months since the treatment ended.
He has not had one bite of food in over 5 months and not even a SIP of water in the last 4 months!
I can't even imagine that.
My question is this:
Can not using your esophagus for that long be damaging? I worry he will never be able to eat or drink again.
He spits up this awful mucus and lately, this nasty smelling green chunks of something vile.
We went last week for a doctor's appointment but the oncologist seems to think we need to wait until after Christmas to do a PET scan or anything else.
My husband looks good so everyone seems to assume he is cured. My gut says differently but I am certainly no doctor!
Anyone with any help would be so appreciated.
I feel we are in limbo here.
Kay

Pam M

oceancaydream said:

Still can't swallow
I'm not even sure where to begin in this story of my husbands Stage IV high grade 4 Undifferentiated Large Cell Neuroendocrine throat cancer of the back of the throat. MANY Lymph nodes were involved on both sides with extensive necrosis. Neuroendocrine histology is very rare in the throat so i am told. Not much data to support methodology.
He went the 8 weeks 5 times a week of radiation which was hell and 4 out of the 6 weeks of chemo. (His blood values were so bad he couldn't do 2 of the 6 scheduled rounds of chemo)
It's been 3 months since the treatment ended.
He has not had one bite of food in over 5 months and not even a SIP of water in the last 4 months!
I can't even imagine that.
My question is this:
Can not using your esophagus for that long be damaging? I worry he will never be able to eat or drink again.
He spits up this awful mucus and lately, this nasty smelling green chunks of something vile.
We went last week for a doctor's appointment but the oncologist seems to think we need to wait until after Christmas to do a PET scan or anything else.
My husband looks good so everyone seems to assume he is cured. My gut says differently but I am certainly no doctor!
Anyone with any help would be so appreciated.
I feel we are in limbo here.
Kay

Long Time
Hi Kay.

At three months past treatment, I'm surprised he's not swallowing, and the doc's not saying anything about it. Has he been doing swallowing exercises? Even though I couldn't swallow food for a while (I was always able to get a least a sip of water down a few times a day), I did swallow - it was just "practice" swallows - no food or drink involved.

Lots of docs don't want to do a PET this soon after treatment - many folks who do have one this early go through the anxiety of false positives, and there are areas that are still "cooking", maybe cancer cells in the process of dying that will light up a PET scan today, but not in a couple months from now.

Did doc say anything about the smelly chunks he's hacking up? I did have increased "throat gunk" for a while (still do, but there's much less of it now).

Hope you all start to feel like you're making more progress in the recovery department soon.

sweetblood22

oceancaydream said:

Still can't swallow
I'm not even sure where to begin in this story of my husbands Stage IV high grade 4 Undifferentiated Large Cell Neuroendocrine throat cancer of the back of the throat. MANY Lymph nodes were involved on both sides with extensive necrosis. Neuroendocrine histology is very rare in the throat so i am told. Not much data to support methodology.
He went the 8 weeks 5 times a week of radiation which was hell and 4 out of the 6 weeks of chemo. (His blood values were so bad he couldn't do 2 of the 6 scheduled rounds of chemo)
It's been 3 months since the treatment ended.
He has not had one bite of food in over 5 months and not even a SIP of water in the last 4 months!
I can't even imagine that.
My question is this:
Can not using your esophagus for that long be damaging? I worry he will never be able to eat or drink again.
He spits up this awful mucus and lately, this nasty smelling green chunks of something vile.
We went last week for a doctor's appointment but the oncologist seems to think we need to wait until after Christmas to do a PET scan or anything else.
My husband looks good so everyone seems to assume he is cured. My gut says differently but I am certainly no doctor!
Anyone with any help would be so appreciated.
I feel we are in limbo here.
Kay

Hi Kay.
I guess I'm not clear on why he cannot swallow. Is it mouth sores? A stricture? Nerve damage? Do you guys know why he cannot swallow? I didn't drink anything at all for about 5 months, and I couldn't eat anything by mouth for 9 months. I had severe mouth sores and I had a stricture. For mouth sores I would recommend taking a look at L-Glutamine. Many of have had success with it. I would take a heaping tsp in a cup of water and swish and swallow. You can read about it in the superthread, I will post the link here for you. If it's a stricture, they can go in and stretch the esophagus. I've had a total of three. If you don't know why swallowing is an issue, then they can do a swallowing study, where they take pix of you swallowing different stuff or just the liquid to swallow and they can assess what the issue may be. There are speech therapists and pathologists, that can also help with exercises. Guess that is all the imput I have since I'm not clear why.

It did take me a very long time to be able to eat normally. I had my peg tube for 18 months. I finished treatment on 5/15/09. I didn't really even start eating what I would consider normal food, until a year later, like in June of last year. You can 'lose your swallow' if you do not keep swallowing during treatment and recovery. Mine was radiation damage.

Here is the superthread link. There are three or for links for Glutamine under the section, that says something like, Products and tips that help with side effects:

HNC  SUPERTHREAD

Best of luck

oceancaydream

sweetblood22 said:

Hi Kay.
I guess I'm not clear on why he cannot swallow. Is it mouth sores? A stricture? Nerve damage? Do you guys know why he cannot swallow? I didn't drink anything at all for about 5 months, and I couldn't eat anything by mouth for 9 months. I had severe mouth sores and I had a stricture. For mouth sores I would recommend taking a look at L-Glutamine. Many of have had success with it. I would take a heaping tsp in a cup of water and swish and swallow. You can read about it in the superthread, I will post the link here for you. If it's a stricture, they can go in and stretch the esophagus. I've had a total of three. If you don't know why swallowing is an issue, then they can do a swallowing study, where they take pix of you swallowing different stuff or just the liquid to swallow and they can assess what the issue may be. There are speech therapists and pathologists, that can also help with exercises. Guess that is all the imput I have since I'm not clear why.

It did take me a very long time to be able to eat normally. I had my peg tube for 18 months. I finished treatment on 5/15/09. I didn't really even start eating what I would consider normal food, until a year later, like in June of last year. You can 'lose your swallow' if you do not keep swallowing during treatment and recovery. Mine was radiation damage.

Here is the superthread link. There are three or for links for Glutamine under the section, that says something like, Products and tips that help with side effects:

HNC  SUPERTHREAD

Best of luck

Still Not Swallowing
Thank you so much for the reply and link.
He can't swallow b/c he says when he tries he feels something still there and it gags him. He feels it's better not to do anything than to upchuck so we wait...
I'm not sure if it's stricture or an obstruction still there. He says it feels like a finger in his throat and now his ear hurts and jaw.
He was initially diagnosed with many large tumors but the biggest one was a tumor measuring over 4 inches across and was less than 3 weeks from being suffocated by it when he went for his biopsy and the surgeon "debulked" it.
His first CT Scan since treatment showed the tumors have shrunk by half but are still there. Hopefully they are "dead" but we won't know that until the PET Scan in 2-3 months.
No one seems to be worried about this but me.
The things he coughs up are nasty and smelly dark green chunks which i suppose could be dead tissue killed by the radiation.
My husbands approach to this is to do nothing and say nothing but I think that's foolish. I am biting my lip trying to allow this up to him but it's hard!
Thanks for your help. It's nice to have someone that's been there- done that
Best Regards
Kay

oceancaydream

Pam M said:

Long Time
Hi Kay.

At three months past treatment, I'm surprised he's not swallowing, and the doc's not saying anything about it. Has he been doing swallowing exercises? Even though I couldn't swallow food for a while (I was always able to get a least a sip of water down a few times a day), I did swallow - it was just "practice" swallows - no food or drink involved.

Lots of docs don't want to do a PET this soon after treatment - many folks who do have one this early go through the anxiety of false positives, and there are areas that are still "cooking", maybe cancer cells in the process of dying that will light up a PET scan today, but not in a couple months from now.

Did doc say anything about the smelly chunks he's hacking up? I did have increased "throat gunk" for a while (still do, but there's much less of it now).

Hope you all start to feel like you're making more progress in the recovery department soon.

Still Not Swallowing
Hello Pam,
Thank you for the reply.
The smelly green chunks are as nasty as they come.
The oncologist doesn't seem to think much about anything we report so we wait...
My husband seems to think that if we do nothing, it will all just go away. Drives me CRAZY!
It's nice to talk to others who have been there and done that.
Warm Regards
Kay

buzz99

oceancaydream said:

Still Not Swallowing
Hello Pam,
Thank you for the reply.
The smelly green chunks are as nasty as they come.
The oncologist doesn't seem to think much about anything we report so we wait...
My husband seems to think that if we do nothing, it will all just go away. Drives me CRAZY!
It's nice to talk to others who have been there and done that.
Warm Regards
Kay

Not swallowing
I know what you mean when the docs just blow off your concerns. I think your hubby needs a swallow evaluation. This is done by Speech Pathology in the xray department. The therapist gives the patient small amounts of liquids and applesauce with barium to observe how the patient swallows and if the material is going into the esophagus properly. At the very least, he should be seen by speech therapist for exercises. There is a possibility that what he is able to swallow is going into his lungs. This can cause pneumonia. Buzz had a swallow evaluation in the hospital while he was being treated for a neck abscess. Some liquid was going into his lungs and he had to go back on tube feedings for 3 weeks until the swelling subsided. Karen

sweetblood22

oceancaydream said:

Still Not Swallowing
Thank you so much for the reply and link.
He can't swallow b/c he says when he tries he feels something still there and it gags him. He feels it's better not to do anything than to upchuck so we wait...
I'm not sure if it's stricture or an obstruction still there. He says it feels like a finger in his throat and now his ear hurts and jaw.
He was initially diagnosed with many large tumors but the biggest one was a tumor measuring over 4 inches across and was less than 3 weeks from being suffocated by it when he went for his biopsy and the surgeon "debulked" it.
His first CT Scan since treatment showed the tumors have shrunk by half but are still there. Hopefully they are "dead" but we won't know that until the PET Scan in 2-3 months.
No one seems to be worried about this but me.
The things he coughs up are nasty and smelly dark green chunks which i suppose could be dead tissue killed by the radiation.
My husbands approach to this is to do nothing and say nothing but I think that's foolish. I am biting my lip trying to allow this up to him but it's hard!
Thanks for your help. It's nice to have someone that's been there- done that
Best Regards
Kay

Kay
Doing nothing, does not sound like a plan to me. As Karen said, and I covered above, he needs to have a swallowing study done. In this case, if he waits, it could just get worse. He could totally lose his ability to swallow permanently. Not to mention he is probably feeling miserable, and this may help. I wouldn't wait, but that's just me. I know I was extremely depressed and dispondent when I couldn't eat. Not good.

John Watton

oceancaydream said:

Still Not Swallowing
Thank you so much for the reply and link.
He can't swallow b/c he says when he tries he feels something still there and it gags him. He feels it's better not to do anything than to upchuck so we wait...
I'm not sure if it's stricture or an obstruction still there. He says it feels like a finger in his throat and now his ear hurts and jaw.
He was initially diagnosed with many large tumors but the biggest one was a tumor measuring over 4 inches across and was less than 3 weeks from being suffocated by it when he went for his biopsy and the surgeon "debulked" it.
His first CT Scan since treatment showed the tumors have shrunk by half but are still there. Hopefully they are "dead" but we won't know that until the PET Scan in 2-3 months.
No one seems to be worried about this but me.
The things he coughs up are nasty and smelly dark green chunks which i suppose could be dead tissue killed by the radiation.
My husbands approach to this is to do nothing and say nothing but I think that's foolish. I am biting my lip trying to allow this up to him but it's hard!
Thanks for your help. It's nice to have someone that's been there- done that
Best Regards
Kay

Swallowing and side effects
Hi. I am just over a year out from treatments for a stage three cancer of my tongue and throat. I spent many long nights sitting up because the effects of the radiation and chemotherapy were devastating to me. The side effects grew worse and worse, but now I can say they have subsided. Those chunks happened to me as well,along with extreme amounts of mucus . My doctors encouraged me to keep eating and drinking as much as possible because after treatment recovery would be much harder if my Throat "forgot" how to swallow. Easier said than done! my local physician arranged for me to have a feeding tube. It saved my life! For a while I simply was unable to swallow at all...or talk for that matter.
Now things are much better...and the fight continues . I blogged the whole experience .
I do need to update my writing .I was waiting for some definitive answer before doing do. Now the time has come.I wrote to keep my friends and Church family in the loop while I was having treatments,and was quite surprised at how many people followed it. If you are interested let me know and I will send you the link. Wishing you both the very best for the future.
John

John Watton

yangkwei said:

dry mouth
completed radiation and chemo for bot squamous cell 1 1/2 years ago. going through extreme dry mouth now. cannot talk at times. any suggestions?

Some encouragement as well
I kept a blog as well in the hope of keeping friends,family and my church community informed as to how things were going. It was widely read .I hope it might help you as well.every blessing on your journey. Here is the address http://notalwayssomeoneelse.blogspot.com/

John Watton

oceancaydream said:

Still Not Swallowing
Hello Pam,
Thank you for the reply.
The smelly green chunks are as nasty as they come.
The oncologist doesn't seem to think much about anything we report so we wait...
My husband seems to think that if we do nothing, it will all just go away. Drives me CRAZY!
It's nice to talk to others who have been there and done that.
Warm Regards
Kay

Blog
I realized that I could post the link to my blog here
Again, wishing you every blessing
http://notalwayssomeoneelse.blogspot.com/

John Watton

oceancaydream said:

Still Not Swallowing
Hello Pam,
Thank you for the reply.
The smelly green chunks are as nasty as they come.
The oncologist doesn't seem to think much about anything we report so we wait...
My husband seems to think that if we do nothing, it will all just go away. Drives me CRAZY!
It's nice to talk to others who have been there and done that.
Warm Regards
Kay

Blog
Think this might have posted twice. Sorry

Hondo

John Watton said:

Swallowing and side effects
Hi. I am just over a year out from treatments for a stage three cancer of my tongue and throat. I spent many long nights sitting up because the effects of the radiation and chemotherapy were devastating to me. The side effects grew worse and worse, but now I can say they have subsided. Those chunks happened to me as well,along with extreme amounts of mucus . My doctors encouraged me to keep eating and drinking as much as possible because after treatment recovery would be much harder if my Throat "forgot" how to swallow. Easier said than done! my local physician arranged for me to have a feeding tube. It saved my life! For a while I simply was unable to swallow at all...or talk for that matter.
Now things are much better...and the fight continues . I blogged the whole experience .
I do need to update my writing .I was waiting for some definitive answer before doing do. Now the time has come.I wrote to keep my friends and Church family in the loop while I was having treatments,and was quite surprised at how many people followed it. If you are interested let me know and I will send you the link. Wishing you both the very best for the future.
John

Hi John W

Welcome to CSN, sorry to hear about your C but just glad you are here to tell your story

Take Care
╠╣ONDO

Hondo

oceancaydream said:

Still Not Swallowing
Thank you so much for the reply and link.
He can't swallow b/c he says when he tries he feels something still there and it gags him. He feels it's better not to do anything than to upchuck so we wait...
I'm not sure if it's stricture or an obstruction still there. He says it feels like a finger in his throat and now his ear hurts and jaw.
He was initially diagnosed with many large tumors but the biggest one was a tumor measuring over 4 inches across and was less than 3 weeks from being suffocated by it when he went for his biopsy and the surgeon "debulked" it.
His first CT Scan since treatment showed the tumors have shrunk by half but are still there. Hopefully they are "dead" but we won't know that until the PET Scan in 2-3 months.
No one seems to be worried about this but me.
The things he coughs up are nasty and smelly dark green chunks which i suppose could be dead tissue killed by the radiation.
My husbands approach to this is to do nothing and say nothing but I think that's foolish. I am biting my lip trying to allow this up to him but it's hard!
Thanks for your help. It's nice to have someone that's been there- done that
Best Regards
Kay

Hi Kay
I hope and pray that the tumors will continue to grow smaller and just disappear. On the green mucus I cough that up as well sometimes but mostly when I have inflammation or a infection in the lungs. May sure his doctors keep a check on it so it don’t turn in to something else.

PS: Welcome to the family here on CSN

Take Care
╠╣ONDO

oceancaydream

John Watton said:

Blog
Think this might have posted twice. Sorry

Your Blog
Thank you John for the link to your blog. I look forward to reading it.
It's hard to sit by and be so clueless. Any help at all is so appreciated.
Warmest Regards,
Kay

John Watton

oceancaydream said:

Your Blog
Thank you John for the link to your blog. I look forward to reading it.
It's hard to sit by and be so clueless. Any help at all is so appreciated.
Warmest Regards,
Kay

Contact
You are more than welcome. My wife was my protector ,inspiration and guide through this nightmare. I went from 195 to 113 pounds by the time I was able to start eating again. There is a lot to share..my view us to be honest and up front about the struggle,but keep hope alive. A good sense of humour is vital too! Let me know what you think of the blog
John

Hughman

Hedwig said:

Just starting this journey
My hubby age 66 noticed a lump on the left side of his neck,biopsy proved positive,cy scan, another area noted at tonsil area,
Then surgery to remove tonsil and did some biopsies,now scheduled for chemo and radiation. We has a dental checkup and dep cleaning,and flouride trays made to use every day. We met the chemo doc, very scary to hear about the drug and side effects (cisplatin). We mee the radiation doc this week and have a swallowing study. It sounds like 5 days of radiation and one day of chemo.I am researching every thing I can to help him. I have stopped all outside activities and it is strictly focusing on him. We did buy a juicer and trying to get used to that. He is just starting to eat after the tonsillectomy. The docs seemed all so casual about or maybe it is just my anxiety getting the best of me. We are both retired and have lived such a simple life and that was just fine with us. I am praying and have a few friends praying for us. We have only shared this with a few people cause we want to stay positive. Thanks for listening and hope to share our story to help others and pick up some hints from all of you. Gob bless.

Just Starting This Journey
Hedwig, welcome to the thread and my heart goes out to you and your husband. It's good he has you to go through this with him. I dint know how I would have made it without my amazing wife. To witness the challenges ofhis e xperience on the spouse almost seemed worse than what ii was going through. I also felt the doctors weren't all that concerned but in fact they rely on studies of cancer treatments for exactly the kind of diagnosis your husband has and in my case (left tonsil, left lymph nodes) I double checked their prescribed treatment with a doctor friend and he confirmed the exact same treatment. Sometimes it seemed hard to believe but they want to save my life. I've just finished the treatment a week ago so I'm so still in the recovery stage. I'm so glad I found this thread and if theres anything I can offer for support, let me know.

Hughman

Boston Bunny

Gagging and sensation of lump in the throat during treatment

I have BOT cancer. I am finishing up my 5th week of treatment. The treatment is chemo once a week for 7 weeks and 7 weeks of radiation 5 times a week. No peg tube at this time. Swallowing was ok, but now I find myself gagging alot, sometimes to the point where the entire bottle of Ensure comes right back up. Then I have to start all over again. Has anyone else experienced this? I am also feeling like there is a lump in my throat.  Couldn't possibly be food lodged in my throat. I have not had any thing solid in weeks, only liquified chicken noodle soups with added hard boiled eggs or cooked pieces of meat. I have a great blender that liquifies everything. I would appreciate it if you would let me know if the gagging and feeling of a lump in the throat has been experienced by any one else during their treatment of head and neck cancer.  Thank you.