Tongue & Throat Cancer

catya88

Hi Everyone

My boyfriend was just diagnosed with cancer of the tongue, stage IV tumor and cancer of the throat. Still in the early stages of everything.

He has seen the radiologist, had his CAT and PET scans. Will see the oncologist and will see the nutrionist all this week. Don't have a set date to start treament yet.

I have read the information the one doctor sent home on all the great things that will happen during radiation.

So, I'm trying to find any posts on throat/tongue cancer and read other information.

Any thoughts and suggestions for what lies down the road will be greatly appreciated.

Cathy

SASH

What to read
There are tons of posts right here on both Tongue and Throat cancers. What treatments are done, how people react to them, side effects, eating, swallowing, etc. Just read, read, read.

Pam M

New Patient Here, too
Cathy,

What SASH said - I've been reading everything I can on the discussion boards here. I'm a Base of Tongue IV patient, will start chemo-radiation in February, I think.

Something to keep in mind (as lots of people will say) is that treatment varies with the individual, and two different people may react very differently to the same treatment protocol.

The people here are helpful and forthcoming - good luck - keep breathing.

I hope your boyfriend (and you) do well.

- Pam

catya88

Pam M said:

New Patient Here, too
Cathy,

What SASH said - I've been reading everything I can on the discussion boards here. I'm a Base of Tongue IV patient, will start chemo-radiation in February, I think.

Something to keep in mind (as lots of people will say) is that treatment varies with the individual, and two different people may react very differently to the same treatment protocol.

The people here are helpful and forthcoming - good luck - keep breathing.

I hope your boyfriend (and you) do well.

- Pam

Thanks
Thanks SASH and PAM

Pam when were you diagnosed? My boyfriend, Tim, was diagnosed December 7. I ask because they are going to start radiation next month, February seems so long to wait.

I have alot of reading but this group looks very supportive and informative.

Does Stage IV mean the throat cancer as well? or is that another story?

He wants to keep eating and it is getting more difficult. Mac & cheese is going down well so he's been alot of that and full yogurt as well. They gave him some samples of BOOST at the hospital yesterday.

I'm staying positive in my thoughts and actions.

Cathy

Pam M

catya88 said:

Thanks
Thanks SASH and PAM

Pam when were you diagnosed? My boyfriend, Tim, was diagnosed December 7. I ask because they are going to start radiation next month, February seems so long to wait.

I have alot of reading but this group looks very supportive and informative.

Does Stage IV mean the throat cancer as well? or is that another story?

He wants to keep eating and it is getting more difficult. Mac & cheese is going down well so he's been alot of that and full yogurt as well. They gave him some samples of BOOST at the hospital yesterday.

I'm staying positive in my thoughts and actions.

Cathy

Cathy,
I'm not waiting 'til
Cathy,

I'm not waiting 'til Feb for treatment, just for radiation (rads). My diagnosis (dx) was end of Oct. I started induction chemo (no radiation) Nov 19 - full day of IVs, then home, where a mobile nurse hooked me up to a 5-day pump for add'l chemo (totally mobile - the drug's in a fanny pack I wear for 5 days each round). 21 days later, I started again with round 2. Round 3 starts Dec. 30, if all goes well. Then a short break, THEN chemotherapy with radiation (chemo-rads). For me, stage IV means my cancer has hit two lymph nodes (in the neck)- one huge, (that's how they found the cancer)- this means it spread from the primary (base of my tongue) to the lymph nodes.

I, too, find some things too difficult to eat. When I just can't, I supplement with liquid nutrition (like Boost or Ensure, but for diabetics). I also do a yogurt smoothie with fruit and protein powder added. My chemo doctor (MO - medical oncologist) just told me to keep up my calorie and protein intake (and, of course, water). Most of the eating advice I got, though was from the booklets I got at the MO's and discussion boards like this.

I keep reading people saying "Eat and swallow as long as you can". I try to do this as much as possible. Some people can swallow throughout treatments (tx). Some cannot. I'd be interested to hear how your (his) treatment goes, since I'm going to be doing the same later. Someone on a post repeatedly says "10% of people sail through chemo-rads. 10% suffer horribly. The rest of us are somewhere in between." Here's hoping you guys are sailors.

Oh - when they tell you to monitor his temp - do it! I got an infection round 1, and would never have known I had a fever if I hadn't been checking my temp religiously. When your immune system in compromised (part of chemo), it can't react like it normally would to infection (feeling bad, hot, etc.). I felt just the same as I did the day before I got the fever.

As a newbie, I can only give you what I know - as they read your post, others with more wisdom/experience will chime in.

Round 1 chemo, I did get some medicine that helped with pain while I was eating - let his dr. know everything that's going on.

Again, breathe - be well

doitforoj

Pam M said:

Cathy,
I'm not waiting 'til
Cathy,

I'm not waiting 'til Feb for treatment, just for radiation (rads). My diagnosis (dx) was end of Oct. I started induction chemo (no radiation) Nov 19 - full day of IVs, then home, where a mobile nurse hooked me up to a 5-day pump for add'l chemo (totally mobile - the drug's in a fanny pack I wear for 5 days each round). 21 days later, I started again with round 2. Round 3 starts Dec. 30, if all goes well. Then a short break, THEN chemotherapy with radiation (chemo-rads). For me, stage IV means my cancer has hit two lymph nodes (in the neck)- one huge, (that's how they found the cancer)- this means it spread from the primary (base of my tongue) to the lymph nodes.

I, too, find some things too difficult to eat. When I just can't, I supplement with liquid nutrition (like Boost or Ensure, but for diabetics). I also do a yogurt smoothie with fruit and protein powder added. My chemo doctor (MO - medical oncologist) just told me to keep up my calorie and protein intake (and, of course, water). Most of the eating advice I got, though was from the booklets I got at the MO's and discussion boards like this.

I keep reading people saying "Eat and swallow as long as you can". I try to do this as much as possible. Some people can swallow throughout treatments (tx). Some cannot. I'd be interested to hear how your (his) treatment goes, since I'm going to be doing the same later. Someone on a post repeatedly says "10% of people sail through chemo-rads. 10% suffer horribly. The rest of us are somewhere in between." Here's hoping you guys are sailors.

Oh - when they tell you to monitor his temp - do it! I got an infection round 1, and would never have known I had a fever if I hadn't been checking my temp religiously. When your immune system in compromised (part of chemo), it can't react like it normally would to infection (feeling bad, hot, etc.). I felt just the same as I did the day before I got the fever.

As a newbie, I can only give you what I know - as they read your post, others with more wisdom/experience will chime in.

Round 1 chemo, I did get some medicine that helped with pain while I was eating - let his dr. know everything that's going on.

Again, breathe - be well

Nearing the end of treatment
Cathy,

The first you did the smartest thing you will do in helping Tim out with his treatment and that is logging on here.

My name is Kurt and I was diagnosed sept. 11 2009 with SCC of the tongue stage IV with spreading to 3 lymph nodes on one side of my neck and one on the other side. I began treatment of 33 rads and 3 chemos (Cisplatin) on Nov'9th. I have 6 rads and one chemo left.

Tim's head is going through a lot right now. I don't know how much he will share with you. All you can do is be there for him. He may at times have anger and depression. I do know that the best thing for me where my pity parties. They would come on at times or I would bring them on myself. I chose the shower. I was alone and have privacy. They where very important for me because as I learned, as the treatment date got nearer and began I had to be focused on taking care of myself.

What you hear from these people on this website is what is going to get Tim through this in the best possible way. Try and get Tim to post on here himself and meet these people. These people outside of my family have been the most important people I have ever had in my life.

Now as far as Feb. seeming like a long ways off...well it is. Seems like forever but trust me your Dr's know what they are doing and if they don't these people will let you know. But Feb. is about right as far as starting. There are a lot of things you and Tim are going to go through up till then. There probably be Pet Scan. Need to have a feeding tube put in. Meeting with dr's. A mask has to be made. Computer simulations run. A lot has to be done.

Also they will run a HPV test to see if he is positive. You will learn about all these things in the coming weeks but do make sure you ask them about this test.

Finally, you and Tim keep on living. Treatment will change things in your life but right now just start to deal with the emotional side of hearing this news. I am very sorry Tim has been diagnosed but know that you have many friends here who will help you every step of this journey. God bless you and please tell Tim that he has many people who are now praying for him.

Kurt

cwcad

doitforoj said:

Nearing the end of treatment
Cathy,

The first you did the smartest thing you will do in helping Tim out with his treatment and that is logging on here.

My name is Kurt and I was diagnosed sept. 11 2009 with SCC of the tongue stage IV with spreading to 3 lymph nodes on one side of my neck and one on the other side. I began treatment of 33 rads and 3 chemos (Cisplatin) on Nov'9th. I have 6 rads and one chemo left.

Tim's head is going through a lot right now. I don't know how much he will share with you. All you can do is be there for him. He may at times have anger and depression. I do know that the best thing for me where my pity parties. They would come on at times or I would bring them on myself. I chose the shower. I was alone and have privacy. They where very important for me because as I learned, as the treatment date got nearer and began I had to be focused on taking care of myself.

What you hear from these people on this website is what is going to get Tim through this in the best possible way. Try and get Tim to post on here himself and meet these people. These people outside of my family have been the most important people I have ever had in my life.

Now as far as Feb. seeming like a long ways off...well it is. Seems like forever but trust me your Dr's know what they are doing and if they don't these people will let you know. But Feb. is about right as far as starting. There are a lot of things you and Tim are going to go through up till then. There probably be Pet Scan. Need to have a feeding tube put in. Meeting with dr's. A mask has to be made. Computer simulations run. A lot has to be done.

Also they will run a HPV test to see if he is positive. You will learn about all these things in the coming weeks but do make sure you ask them about this test.

Finally, you and Tim keep on living. Treatment will change things in your life but right now just start to deal with the emotional side of hearing this news. I am very sorry Tim has been diagnosed but know that you have many friends here who will help you every step of this journey. God bless you and please tell Tim that he has many people who are now praying for him.

Kurt

Kurt is right!
I am through treatment and free of stage iv tongue cancer for almost three years. Kurt is right. This is a wonderful place to find out what is going to happen. My doctor asked me the day I was diagnosed, "Are you ready for the fight of your life?" I said, Yes." Little did I know the import of his words. This site has given me hindsight for what I went through.(My wife and brother said I mostly slept through my treatments.) Had I been on this site I mite have had foresight and more tools to deal with the onslaught that was ahead. No matter what...It is doable!! Keep hydrated, medicated, informed, and continue to use the forum as a tool to wellness. Good Luck!!!

Kent Cass

catya88 said:

Thanks
Thanks SASH and PAM

Pam when were you diagnosed? My boyfriend, Tim, was diagnosed December 7. I ask because they are going to start radiation next month, February seems so long to wait.

I have alot of reading but this group looks very supportive and informative.

Does Stage IV mean the throat cancer as well? or is that another story?

He wants to keep eating and it is getting more difficult. Mac & cheese is going down well so he's been alot of that and full yogurt as well. They gave him some samples of BOOST at the hospital yesterday.

I'm staying positive in my thoughts and actions.

Cathy

future
A number of others have gone thru tongue C treatment, which may vary from my Nasopharyngeal, but there is that which most all of us experience with head and neck:

1) feeding tube- a nuisance, but also a necessity which far outweights the negatives brought-on by having one. Work with the Dietician. The formula will do it's job. Have to keep a certain level of good calories being ingested every day. Better to get installed before treatment, than during.

2) realize there are prescrips to help Tim thru this, and all he should have to do is notify the Drs. when he needs more help. The diagnosis of C tends to throw prescrip portocols out the window- and you will get the meds needed to get thru this, if you ask for.

3) stage-4 means it has spread from the Primary to other organs and places in his body. I would assume he will also get chemo, but the tongue was not my C. My experience is the worst of times was when I got the chemo and rad at the same time- and especially the time soon after the chemo stopped.

4) 101 fever- get him to the ER/call your Onco. Anything below is considered part of the battle. 101 means the battle has gotten too much for him, and likely needs more med help.

5) NEVER lose hope, and don't for a minute let him think he can't win this battle. Negative thoughts are of no use, and serve no purpose. We on this forum are proof he can make it thru this, with your help. I'm 13-months/8-months post-treatment, and going strong.

kcass

Hal61

Pam M said:

New Patient Here, too
Cathy,

What SASH said - I've been reading everything I can on the discussion boards here. I'm a Base of Tongue IV patient, will start chemo-radiation in February, I think.

Something to keep in mind (as lots of people will say) is that treatment varies with the individual, and two different people may react very differently to the same treatment protocol.

The people here are helpful and forthcoming - good luck - keep breathing.

I hope your boyfriend (and you) do well.

- Pam

Hi Cathy and Everyone,

Hi Cathy and Everyone,
My name is Hal and I got my Stage 4, base of tongue diagnosis in mid November. I've been shuffling through the process as you all are, or have. Like Kurt, I'll be getting 3 chemos and 7 weeks of rads. I live alone, and am curious as to whether I will or won't be able to drive myself to and from treatments, in city. Dr. said yes, nurse said yes; the social worker said probably not. I'm faxing the American Cancer Society a "referral" requests that is only a page long,and checked a box indicating I'd like someone to call me about transportaion needs. As I read I see that many of you had someone close, nearby, but there must be other's like myself. Any advice or opinion would be appreciated. I keep a picture (borrowed from the Internet) of a healthy lymph cell on my wall, and try to look at it and picture it moving into my nodes on and off during the day. Can't hurt. I wish all of us the very best.

Hal61

Landranger25

Hal61 said:

Hi Cathy and Everyone,

Hi Cathy and Everyone,
My name is Hal and I got my Stage 4, base of tongue diagnosis in mid November. I've been shuffling through the process as you all are, or have. Like Kurt, I'll be getting 3 chemos and 7 weeks of rads. I live alone, and am curious as to whether I will or won't be able to drive myself to and from treatments, in city. Dr. said yes, nurse said yes; the social worker said probably not. I'm faxing the American Cancer Society a "referral" requests that is only a page long,and checked a box indicating I'd like someone to call me about transportaion needs. As I read I see that many of you had someone close, nearby, but there must be other's like myself. Any advice or opinion would be appreciated. I keep a picture (borrowed from the Internet) of a healthy lymph cell on my wall, and try to look at it and picture it moving into my nodes on and off during the day. Can't hurt. I wish all of us the very best.

Hal61

Hal61, so sorry you have to
Hal61, so sorry you have to go through this. I am 2 months out of treatment. (33 rads, 3 chemos for SCC base of tongue) My treatments were 50 miles from my house so I had to drive everyday. The weeks I had chemo I didn't feel that I would be safe driving. (chemo brain?) Some people handle the chemo better than others so tough to say how it will go for you. I like the idea of the healthy lymph node on your wall. I used visualization as well. As I lay on the table under the mask getting my rads I would imagine the cancer cells getting hammered and dying repeating over in my head thoughts/comments about them dying. It was great satisfaction. I also had my beautiful wife and daughter at home. My daughter was a huge strength as I couldn't bear the thought of her seeing me sick and weak and it causing her to feel fearful and insecure. I was up everyday like normal and tried to keep as normal routine as possible. My wife was very tuned in with how I was feeling each day, put up with my nodding and head shaking the 2 weeks I couldn't talk and was generally just there to pick up the slack. There were times I just needed to handle it alone but I am so thankful I had their support. I wish you well and keep posting.

Mike

Hal61

Landranger25 said:

Hal61, so sorry you have to
Hal61, so sorry you have to go through this. I am 2 months out of treatment. (33 rads, 3 chemos for SCC base of tongue) My treatments were 50 miles from my house so I had to drive everyday. The weeks I had chemo I didn't feel that I would be safe driving. (chemo brain?) Some people handle the chemo better than others so tough to say how it will go for you. I like the idea of the healthy lymph node on your wall. I used visualization as well. As I lay on the table under the mask getting my rads I would imagine the cancer cells getting hammered and dying repeating over in my head thoughts/comments about them dying. It was great satisfaction. I also had my beautiful wife and daughter at home. My daughter was a huge strength as I couldn't bear the thought of her seeing me sick and weak and it causing her to feel fearful and insecure. I was up everyday like normal and tried to keep as normal routine as possible. My wife was very tuned in with how I was feeling each day, put up with my nodding and head shaking the 2 weeks I couldn't talk and was generally just there to pick up the slack. There were times I just needed to handle it alone but I am so thankful I had their support. I wish you well and keep posting.

Mike

Thanks for the kind thoughts
Thanks for the kind thoughts and information Mike. I'm still working toward treatment. Today I go to the dentist to get a problem toooth pulled. I have to have a clean bill of health from my dentist to proceed. I'm glad you're through it. The chemo seems to have changed in the last few years, with three sessions. Do you mind if I ask what the chemical agent or agents used were? Kurt used only one for his three, if I'm reading his post correctly.

best, Hal61

catya88

Hal61 said:

Thanks for the kind thoughts
Thanks for the kind thoughts and information Mike. I'm still working toward treatment. Today I go to the dentist to get a problem toooth pulled. I have to have a clean bill of health from my dentist to proceed. I'm glad you're through it. The chemo seems to have changed in the last few years, with three sessions. Do you mind if I ask what the chemical agent or agents used were? Kurt used only one for his three, if I'm reading his post correctly.

best, Hal61

Thanks to all
Thanks to all, again.

Pam - Tim is the same as you with the cancer. Stage IV base of tongue and two lymph nodes, plus the throat cancer. The doctor said it had not spread to his jaw, lungs or esophagus.

Thanks to all for the tips, need to go get a thermometer now ;-)

Tim goes in next Tuesday for the feeding tube and will start the chemo and radiation on December 28. Every day for seven weeks. He had a good day yesterday, he was talkative and played with the dog and ate alot of mac and cheese. Still doesn't want to talk about it, not even with his brothers, who I've been talking to and keeping them up-to-date. I think Tim's job will pull him through this. He's not one to sit around and do nothing.

I'm overwhelmed with everyones good thoughts, concerns and tips. The last support group I joined, for my TMJ, was anything but supportive. I look forward to keeping in touch and reading everyones stories and how they are coping. Sending happy thoughts to everyone.

Cathy

Dazey

Hal61 said:

Hi Cathy and Everyone,

Hi Cathy and Everyone,
My name is Hal and I got my Stage 4, base of tongue diagnosis in mid November. I've been shuffling through the process as you all are, or have. Like Kurt, I'll be getting 3 chemos and 7 weeks of rads. I live alone, and am curious as to whether I will or won't be able to drive myself to and from treatments, in city. Dr. said yes, nurse said yes; the social worker said probably not. I'm faxing the American Cancer Society a "referral" requests that is only a page long,and checked a box indicating I'd like someone to call me about transportaion needs. As I read I see that many of you had someone close, nearby, but there must be other's like myself. Any advice or opinion would be appreciated. I keep a picture (borrowed from the Internet) of a healthy lymph cell on my wall, and try to look at it and picture it moving into my nodes on and off during the day. Can't hurt. I wish all of us the very best.

Hal61

Hi Hal
I am out of radiation treatment almost 8 weeks. I did not have chemo, but 30 IMRT (six weeks. I also found this board early and asked a similar question. The answers were varied just as each person is varied. In my case I was able to drive myself to and from radiation treatment. I also worked full time during it. I would leave work a little early and drive the 45 minutes to the center. The only time I did not follow this schedule was when my sister came to visit for week six and would not let me drive (and I took off work to visit. The day she left, I went back to work.

Each person is different. Please remember that. This worked for me. Good luck on this journey - it certainly will keep you busy. Dazey

Hal61

Dazey said:

Hi Hal
I am out of radiation treatment almost 8 weeks. I did not have chemo, but 30 IMRT (six weeks. I also found this board early and asked a similar question. The answers were varied just as each person is varied. In my case I was able to drive myself to and from radiation treatment. I also worked full time during it. I would leave work a little early and drive the 45 minutes to the center. The only time I did not follow this schedule was when my sister came to visit for week six and would not let me drive (and I took off work to visit. The day she left, I went back to work.

Each person is different. Please remember that. This worked for me. Good luck on this journey - it certainly will keep you busy. Dazey

Thanks Dazey, for your reply
Thanks Dazey, for your reply and your story. I hope I have your stamina and determination!
Hal

catya88

Hal61 said:

Thanks Dazey, for your reply
Thanks Dazey, for your reply and your story. I hope I have your stamina and determination!
Hal

Mouth sores and breathing
Hi everyone

Happy Saturday! I live in Virginia and we are getting the BIG SNOW.

I noticed Tim breathes through his mouth and I know reading about the radiation that the throat and tongue will become swollen, anyone have any experiences and suggestions?

What about the mouth sores? He has a real hard time with that.

Ok, well, I'm going outside to dig a spot for my dachshund :-)

Cathy

Kent Cass

catya88 said:

Mouth sores and breathing
Hi everyone

Happy Saturday! I live in Virginia and we are getting the BIG SNOW.

I noticed Tim breathes through his mouth and I know reading about the radiation that the throat and tongue will become swollen, anyone have any experiences and suggestions?

What about the mouth sores? He has a real hard time with that.

Ok, well, I'm going outside to dig a spot for my dachshund :-)

Cathy

Mouth sores
Magic Mouthwash. My Onco also had me on Nystatin to fight infection for awhile. If the sores extend out to the lips, then the Aquaphor lotion on those sores does okay. The sad thing is- those sores began late in week #1, and were with me thru all my treatment, to varying degrees. The good thing is- the mouth healed great once the treatment was done. It's just part of the battle a lot of us have experienced, and now Tim is, also. He'll get thru it. Just keep giving the body what it needs via the feeding tube.

As for the breathing- I had/have Nasopharyngeal, and did not have much trouble with that aspect of it. Had nosebleeds, which stopped by stuffing kleenex up my nostrils for awhile, most every day for over a month, but the breathing was the least of my problems.


Believe you can, and you will.

kcass

Landranger25

Kent Cass said:

Mouth sores
Magic Mouthwash. My Onco also had me on Nystatin to fight infection for awhile. If the sores extend out to the lips, then the Aquaphor lotion on those sores does okay. The sad thing is- those sores began late in week #1, and were with me thru all my treatment, to varying degrees. The good thing is- the mouth healed great once the treatment was done. It's just part of the battle a lot of us have experienced, and now Tim is, also. He'll get thru it. Just keep giving the body what it needs via the feeding tube.

As for the breathing- I had/have Nasopharyngeal, and did not have much trouble with that aspect of it. Had nosebleeds, which stopped by stuffing kleenex up my nostrils for awhile, most every day for over a month, but the breathing was the least of my problems.


Believe you can, and you will.

kcass

Sorry Hal
Sorry for the delay in responding Hal, my chemo used cisplaten for an 8 hour infusion on Monday of my chemo weeks. When I left the cancer center that afternoon, I would have a pump in a little pack around my waist that would inject a drug called 5FU into my port about every 25 seconds for the next 96 hours. I would go back to the cancer center each day and they would check the pump and make sure everything was working OK and then on Friday after the 96 hours were up they would take it off. By then I would be feeling really crappy. Took a couple days before I would feel somewhat better. I would get 2 weeks off and then do it again until I had completed the 3 cycles. The first cycle was doable, the second I had a toxic reaction to the 5FU and had to get the pump off 1 day early then I spent the next Monday through Wednesday getting hydration because I was a train wreck. Doc altered 3rd cycle a little bit and although still bad I got through it. Additionally I would have a radiation treatment every day except Saturday and Sunday until I had 33 of them. Like those above have commented, I suffered with bad mouth sores and the sides of my tongue really took a beating, lips dry and cracked. I made sure to keep sipping water/gatorade to keep my throat and swallowing muscles active as the Doctor had said to me, "Whatever you do, don't lose your swallow". I'm glad I listened. I lost 10-12 pounds at every chemo cycle despite having a PEG and using it. Might have got a little behind the ball before I jumped in with it. If Doc advises PEG prior to treatment, I'd listen if I were you. It sure was a life saver for me. Good luck and I'll try and answer anything else for you if I can as will others here. From my experience with this board, these people are all top shelf.

Mike

Hal61

Landranger25 said:

Sorry Hal
Sorry for the delay in responding Hal, my chemo used cisplaten for an 8 hour infusion on Monday of my chemo weeks. When I left the cancer center that afternoon, I would have a pump in a little pack around my waist that would inject a drug called 5FU into my port about every 25 seconds for the next 96 hours. I would go back to the cancer center each day and they would check the pump and make sure everything was working OK and then on Friday after the 96 hours were up they would take it off. By then I would be feeling really crappy. Took a couple days before I would feel somewhat better. I would get 2 weeks off and then do it again until I had completed the 3 cycles. The first cycle was doable, the second I had a toxic reaction to the 5FU and had to get the pump off 1 day early then I spent the next Monday through Wednesday getting hydration because I was a train wreck. Doc altered 3rd cycle a little bit and although still bad I got through it. Additionally I would have a radiation treatment every day except Saturday and Sunday until I had 33 of them. Like those above have commented, I suffered with bad mouth sores and the sides of my tongue really took a beating, lips dry and cracked. I made sure to keep sipping water/gatorade to keep my throat and swallowing muscles active as the Doctor had said to me, "Whatever you do, don't lose your swallow". I'm glad I listened. I lost 10-12 pounds at every chemo cycle despite having a PEG and using it. Might have got a little behind the ball before I jumped in with it. If Doc advises PEG prior to treatment, I'd listen if I were you. It sure was a life saver for me. Good luck and I'll try and answer anything else for you if I can as will others here. From my experience with this board, these people are all top shelf.

Mike

Hi Mike, thanks for your
Hi Mike, thanks for your reply. It's commendable that you and others take your time, post treatment, to offer information and encouragement on this board. All I can say is thank you and thank all of you that revisit your experiences for my and others' sakes. I will do the same.

Cisplaten is the name I was looking for, same as Kurt's. I see my onocologyst next Monday and will ask him if my rx will be the same as yours. It's funny to be scrambling to get a start day for my treatment, given the awareness the board has brought, but I'm sure it's the same for most.

Very best to you and your wife and daughter Mike.

Hal

Kent Cass

Hal61 said:

Hi Mike, thanks for your
Hi Mike, thanks for your reply. It's commendable that you and others take your time, post treatment, to offer information and encouragement on this board. All I can say is thank you and thank all of you that revisit your experiences for my and others' sakes. I will do the same.

Cisplaten is the name I was looking for, same as Kurt's. I see my onocologyst next Monday and will ask him if my rx will be the same as yours. It's funny to be scrambling to get a start day for my treatment, given the awareness the board has brought, but I'm sure it's the same for most.

Very best to you and your wife and daughter Mike.

Hal

PEG
Hal- I'm with Landranger- if the Dr. advises, then get the PEG in beforeheand. I did, and got all my nutrition thru it for my two months of chemo (cisplatin and flourouracil) and rad. I did balk at the notion of the tube with my first Onco visit, but by my second visit was okay with it- and very, very, glad I had it installed. PEGS seem worse than they are- not that big of a deal. Got mine put-in back in January, and still have it- though I haven't used it since early-April. Nothing more than a minor nuisance to me, now, but there was a time it was a lifeline. It really was. If my next PS results are good, plan on getting it removed. If, however, I have cause to think I might need to use it, again, I will keep it. All the Drs. say I can get it removed- it is my decision that I still have it, based on my concerns of C's return, and only wanting one spot of scar tissue on my stomach wall, rather than two. Think of it as a safety net, Hal, to be certain you have everything in place in even a worst-case scenario, especially if your Dr. recommends that you get it done. We, on this forum, are proof you are gonna get thru this okay.

Believe.

Cathy- they really do call it "Magic Mouthwash." My Onco called it that, as did the Pharmacist at Walgreen's, and as did the Nurses at the hospital I was in for four days. Good stuff to help an ailing mouth.

kcass

catya88

Kent Cass said:

PEG
Hal- I'm with Landranger- if the Dr. advises, then get the PEG in beforeheand. I did, and got all my nutrition thru it for my two months of chemo (cisplatin and flourouracil) and rad. I did balk at the notion of the tube with my first Onco visit, but by my second visit was okay with it- and very, very, glad I had it installed. PEGS seem worse than they are- not that big of a deal. Got mine put-in back in January, and still have it- though I haven't used it since early-April. Nothing more than a minor nuisance to me, now, but there was a time it was a lifeline. It really was. If my next PS results are good, plan on getting it removed. If, however, I have cause to think I might need to use it, again, I will keep it. All the Drs. say I can get it removed- it is my decision that I still have it, based on my concerns of C's return, and only wanting one spot of scar tissue on my stomach wall, rather than two. Think of it as a safety net, Hal, to be certain you have everything in place in even a worst-case scenario, especially if your Dr. recommends that you get it done. We, on this forum, are proof you are gonna get thru this okay.

Believe.

Cathy- they really do call it "Magic Mouthwash." My Onco called it that, as did the Pharmacist at Walgreen's, and as did the Nurses at the hospital I was in for four days. Good stuff to help an ailing mouth.

kcass

Tim's first treatment
Hi All

Tim asked his doctor to move up the start date on his radiation. Today was his first session, is that what you call it? Anyway, he didn't do well. He was dehydrated so he had muscle spasms and is/was in alot of pain. He also got his feeding tube as well. They are keeping him overnight to hydrate him.

When I first got there, he was in alot of pain but as the fluids got in and the pain meds he was doing much better, I could even understand what he was saying. Even Tim told the doctor he was talking much better.

So anyway, the other doctor is suppose to write a script for home health care to come and set up for the feeding tube, Tim is trying very hard to eat but he's just not getting enough.

That's my update, thanks for everyone's support and tips.

Cathy

Kent Cass

catya88 said:

Tim's first treatment
Hi All

Tim asked his doctor to move up the start date on his radiation. Today was his first session, is that what you call it? Anyway, he didn't do well. He was dehydrated so he had muscle spasms and is/was in alot of pain. He also got his feeding tube as well. They are keeping him overnight to hydrate him.

When I first got there, he was in alot of pain but as the fluids got in and the pain meds he was doing much better, I could even understand what he was saying. Even Tim told the doctor he was talking much better.

So anyway, the other doctor is suppose to write a script for home health care to come and set up for the feeding tube, Tim is trying very hard to eat but he's just not getting enough.

That's my update, thanks for everyone's support and tips.

Cathy

the start
Cathy- we are all different, and we all "get in," at different times/stages during each's battle with C. Might be a very good thing that he's got an overnight, and "they're on it."

And glad he got the tube thing done. 4.0 is cheaper, and will need fewer/day than the 1.5, but not all can tolerate it (regularity). Get meds for both extemes of bathroom regularity, because they don't know which he will need, and he may need both before it is done (I did). Just the way it is. Have you talked to a Dietician? He'll need the # on how many calories he needs/day, and that's who will provide it. I needed four 4.0 bottles/day.

Our treatment is different. I didn't need anything for pain until the end of the 4th day- and that's when I needed in a major way, but didn't have. I find it good Tim's got that part started early. I would, however, suggest being cautious on the Morphine use. Scared me, but I did use for some 4 weeks. Vicodin is the better route, if it takes care of the needs. ALSO- if Tim's having anxiety-related issues (as I did- the easy way out was in play for short while), let the Drs. know. Two 1/2-tabs of Xanax/day did help me a lot. The diagnosis of C makes it available, Cathy. Trust me on this.

Now, Cathy, is the time for you to experience your finest hour. The days and weeks to come are historic/out of the ordinary in your life, and a time of which you will long remember. Tim needs you now more than you, and maybe he, can know. You now have the opportunity of becoming one of whom we C vets know to be Angels. Please be an Angel for Tim, Cathy. Will not be easy, for either of you, but there will come a time when you will remember...and tears of happiness will fill your eyes: such is of the realm of life where Angels dwell with their good works. That is where you are at, Cathy. Know who you are, now. And, as a C vet of 13-months, I pray that you are the Angel Tim now truly needs in his life. A great storm is upon you, but there you stand, holding hands and facing that storm as if it cannot shake you. Believe it will not, Cathy, and it cannot.

Believe. You, Angel, are now in all our hearts.

kcass