Tongue & Throat Cancer
Comments
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Thanks for the tipsHondo said:Hi Hal61
Welcome to CSN and please use me anytime you need as sometimes posting goes into cyberspace and we never see it again. I would like to know what the doc gave you to help with the teeth enamel as I have a lot of problems with that.
Also I have never heard of using Mary Jane for cancer treatment, I do believe in herbal treatment but this takes it to a new level, hope it works for you.
Take care and God bless and keep you
Thanks everyone for the tips and suggestions.
Another question...........Tim has chemo on Tuesday. Afterwards and on Wednesday and Thursday he does very well talking and is able to eat more, is this normal?
Not much else going on for now - Cathy0 -
Cathy,catya88 said:Thanks for the tips
Thanks everyone for the tips and suggestions.
Another question...........Tim has chemo on Tuesday. Afterwards and on Wednesday and Thursday he does very well talking and is able to eat more, is this normal?
Not much else going on for now - Cathy
It is likely that Tim's chemotherapy mixture includes benadryl or some other relaxation/anti-anxiety elixir along with decadron or some other steroid to alleviate nausea.
In my case, and I have heard the same from others, the decadron in particular turned me into a whirling dervish for the first 24-48 hours following treatment.
Perhaps Tim is benefitting from one or both of these drugs?
Just a guess.
Take care,
Joe0 -
thanks Joesoccerfreaks said:Cathy,
It is likely that Tim's chemotherapy mixture includes benadryl or some other relaxation/anti-anxiety elixir along with decadron or some other steroid to alleviate nausea.
In my case, and I have heard the same from others, the decadron in particular turned me into a whirling dervish for the first 24-48 hours following treatment.
Perhaps Tim is benefitting from one or both of these drugs?
Just a guess.
Take care,
Joe
Thanks Joe
He is getting a nausea med with his chemo and two hours of hydration afterwards. We think it's a good thing.
Cathy0 -
"Panama Red, Panama Red"Hal61 said:Treatment start scheduled
Hi Hondo and Everyone,
The "submit a comment" page has a problem, so I will reply to Hondo, thank you very much. I got fitted for my mask, and did my final scan using the mask. It was tight, and I'm glad I'll be sitting up a little for treatments. I'm scheduled to start the 18th and 20th of January, 2010 on chemo, then rads. I have an appointment for tomorrow with a gastro interologist to see about my peg tube. I'm going to really try and get it done before my treatments start, thanks to all the advice from the great people on this board. I'll try and post as I go, for anyone who can use the information. I'm getting three chemos--Cisplaten--and 35 rads. For what it's worth, my radiation oncologist (I think I've learned to spell it correctly since my last post) did have me go to my dentist, who sent me to a maxio facial specialist to pull a tooth and do xrays. He also gave me for an rx for a product to use nightly to beef up my enamel, which I will pick up tomorrow.
I absolutely appreciate the help on here. My doctors are fine, but my experience is they don't want to say any more than they have to--or probably are able to. People here are my best souorce of iformatioin on what to expect.
I don't know if I should mention this, but I'm using medical marijuana with my treatment. I have listened to the radio Dr., Dean Edell, for many years and he mentioned a study that showed marijuana use was related to a lower instance of throat and head cancers; this is beyond its more accepted use as an anti nausea tretment with chemo. So, I'm experimenting to see if it might do me some good in treatment, i.e., slowing the spread of already existing cancer. I'm not advising it for anybody, and I don't mean to start a debate of drug use, but for now it's part of my treatment and I'll let everybody know if, in my anecdotal opinion, it has any value.
Again, to everyone here, Kurt, Landranger, Cathi, Dazey, and all, thank you for the information. The dietician has the suppliers of the tube hardware and the food products coming to my house soon to tell me about what to do, but the differences in calories, products, etc., is just what I need to know to make the best decisions, and that and more info come from this board.
You are all very brave.
Hal61
(New Riders of the Purple Sage reference)
I guess it depends on who you believe. One study indicates that an active ingredient in cannabis has a positive effect on brain cancer, while another indicates that it has a negative impact on the odds of acquiring testicular cancer (which seems to refute once and for all the notion that men's brains are in their ... but I digress.)
My mother, suffering from ovarian cancer with metastasis to the brain from a previous bout with breast cancer, was prescribed a pill version of THC (the 'active' ingredient in marijuana as you probably know) in Texas of all places, way back in the early 90s, to alleviate nausea and pain.
I understand and appreciate its use in that regard. However, in the article I quote below, I note that they are referencing what appear to be the damaging effects of SMOKING marijuana as opposed to taking a pill that contains its active ingredient.
No one is likely to mistake me for a conservative any time soon, and, for my money, if alcohol and tobacco are legal then it is hard to understand why MJ is not. It seems, though, that ALL of them cause cancer.
Which is to say, Hal, be careful, choose wisely. A whole bunch of people have managed to survive head/neck cancer without marijuana, despite your radio doctor's advice.
Take care,
Joe
From WebMd Health News:
[June 23, 2009 -- Smoking pot causes cell damage that could make a person more likely to develop cancer, researchers report.
Scientists at the University of Leicester have discovered that marijuana (cannabis) smoke alters DNA, the genetic material located in cells of the human body. Some forms of DNA damage can lead to cancer.
Many studies have shown that tobacco smoke damages DNA in a way that boosts risk for lung and other cancers, but until now, it's been unclear whether cannabis smoke could do the same. Of particular concern is a cancer-causing chemical called acetaldehyde, which is found in both tobacco and marijuana smoke. Using new chemistry techniques, study researchers showed that the chemical, when present in marijuana smoke, caused DNA damage in a laboratory setting.
The discovery suggests that marijuana smoke may be as harmful, or perhaps even more toxic, than tobacco smoke. In fact, study researchers say that smoking three to four marijuana cigarettes a day causes as much airway damage as smoking 20 or more cigarettes a day.]0 -
throat cancer
Cathy, I'm truly sorry to hear the hard to swallow news. I am currently recovering from throat cancer. I had 35 treatments of radiation. My last trmnt was Oct. 22. The radiation causes many side effects which I didn't know in advance. I didn't ask questions thru my treatment because I didn't know what to ask. My advice is ASK every question you have. Here are the side a swollen throat which makes it very hard to swallow. I have a feeding tube b/c I can't swallow food. My throat stays dry so I must always have a glass of water with me. I can't sleep well b/c the dry throat causes me to cough most of the night. The horrific burn on my neck from the radiation was awful but once we put Aqua4 on it, it was BETTER. It immediately took away the pain. I am also very tired.
I wish you guys the best and will pray for you. Please keep us posted.
Sincerely,
Debbie0 -
Hi Debbie! You and Idebbiejeanne said:throat cancer
Cathy, I'm truly sorry to hear the hard to swallow news. I am currently recovering from throat cancer. I had 35 treatments of radiation. My last trmnt was Oct. 22. The radiation causes many side effects which I didn't know in advance. I didn't ask questions thru my treatment because I didn't know what to ask. My advice is ASK every question you have. Here are the side a swollen throat which makes it very hard to swallow. I have a feeding tube b/c I can't swallow food. My throat stays dry so I must always have a glass of water with me. I can't sleep well b/c the dry throat causes me to cough most of the night. The horrific burn on my neck from the radiation was awful but once we put Aqua4 on it, it was BETTER. It immediately took away the pain. I am also very tired.
I wish you guys the best and will pray for you. Please keep us posted.
Sincerely,
Debbie
Hi Debbie! You and I finished radiation around the same time. I had 35 treatments too. My last treatment was Oct. 28 of last year. I just got my feeding tube out appox. 3 weeks ago. I think maybe I should of kept it in for longer, as I still have a hard to swallowing most foods. I do drink at least 2 Ensure a day. I wake up at least once through the night with a really dry throat and coughing. Sometimes the coughing lasts for 15 mins., even if I drink water. I was lucky with my skin. I didn't have a hard time with it healing. I applied saline water to it twice a day and then a creme called Gaxal Base. I live in Canada, so I don't know if U.S. has the same:)
Take care,
Cindy0 -
Our treatmentsfishingirl said:Hi Debbie! You and I
Hi Debbie! You and I finished radiation around the same time. I had 35 treatments too. My last treatment was Oct. 28 of last year. I just got my feeding tube out appox. 3 weeks ago. I think maybe I should of kept it in for longer, as I still have a hard to swallowing most foods. I do drink at least 2 Ensure a day. I wake up at least once through the night with a really dry throat and coughing. Sometimes the coughing lasts for 15 mins., even if I drink water. I was lucky with my skin. I didn't have a hard time with it healing. I applied saline water to it twice a day and then a creme called Gaxal Base. I live in Canada, so I don't know if U.S. has the same:)
Take care,
Cindy
Cindy, thank you for replying. YOu're right, we finished one week apart. I'm glad you are done with your treatments. As I read all the posts here I cried so hard I had to stop. To everyone here, I'm so sorry you are going thru this and I will put each of you in my prayers.
Cindy, I'm sorry you are having a hard time swallowing. I still have my tube and wouldn't dream of getting it out as I have a very hard time swallowing. I've gotten choked several times and it scares me to death. I still can't talk right yet. I also cough at night. I'm up at least 5 times coughing and sometimes to the point where I choke. Has your doctor told you how long that will happen? I really have no idea. Have you heard that you cancer is gone? I have, praise God. I cried when the doctor told me b/c I was sooooooooooo happy. I pray that yours and everyones cancer will be gone after treatment. I'm just curious, were you a smoker? I smoked for 40 years. I quit tho with the C scare.
God Bless Everyone,
Debbie0 -
in the middledebbiejeanne said:Our treatments
Cindy, thank you for replying. YOu're right, we finished one week apart. I'm glad you are done with your treatments. As I read all the posts here I cried so hard I had to stop. To everyone here, I'm so sorry you are going thru this and I will put each of you in my prayers.
Cindy, I'm sorry you are having a hard time swallowing. I still have my tube and wouldn't dream of getting it out as I have a very hard time swallowing. I've gotten choked several times and it scares me to death. I still can't talk right yet. I also cough at night. I'm up at least 5 times coughing and sometimes to the point where I choke. Has your doctor told you how long that will happen? I really have no idea. Have you heard that you cancer is gone? I have, praise God. I cried when the doctor told me b/c I was sooooooooooo happy. I pray that yours and everyones cancer will be gone after treatment. I'm just curious, were you a smoker? I smoked for 40 years. I quit tho with the C scare.
God Bless Everyone,
Debbie
Hi Debbie - I finished treatment in the middle the week between you and Cindy(10/26/09). My treatment involved only radiation 30 IMRT - six weeks. It is now January 15 and I can report the mucous has diminished considerably. I have been taking some glutamine as recommended by others on this site. No burning marks on my neck - some "turkey neck" (I hope Ratface reports back soon on the massage therapy to ameliorate that issue.) Some pain on swallowing - but is is mainly related to food texture and certain spices. Again, it is getting better. By the end of each day, my throat is very sore from talking (too much?) and eating. I have had occasional choking times when a food gets caught in a spot (what I shame we don't have the ability to "detour" when swallowing.) I am usually able to either cough it out or use water to pass it on its way or just keep swallowing. I know how scary it can be; I do make note of what the texture was and try to come up with ways to change it. Keep plugging along. I know Cindy is also pushing through all of this. It can be a downer - definitely. I do know that in the beginning, it seemed like it would never be better. Today, I can say each week shows improvement - not necessarily each day,but that is okay I AM getting better. Just wanted to share my thoughts and let you know there are many who are on the same journey - just at different "ports" at different times. Dazey0 -
Hi Debbie! I am sooo happydebbiejeanne said:Our treatments
Cindy, thank you for replying. YOu're right, we finished one week apart. I'm glad you are done with your treatments. As I read all the posts here I cried so hard I had to stop. To everyone here, I'm so sorry you are going thru this and I will put each of you in my prayers.
Cindy, I'm sorry you are having a hard time swallowing. I still have my tube and wouldn't dream of getting it out as I have a very hard time swallowing. I've gotten choked several times and it scares me to death. I still can't talk right yet. I also cough at night. I'm up at least 5 times coughing and sometimes to the point where I choke. Has your doctor told you how long that will happen? I really have no idea. Have you heard that you cancer is gone? I have, praise God. I cried when the doctor told me b/c I was sooooooooooo happy. I pray that yours and everyones cancer will be gone after treatment. I'm just curious, were you a smoker? I smoked for 40 years. I quit tho with the C scare.
God Bless Everyone,
Debbie
Hi Debbie! I am sooo happy for you that you are cancer free!!! I went to my Radiation Oncologist last month, and he put a camera down my throat, and said it looked beautful! BUT..I get an MRI done this Feb5, and that will comfirm everything. So, I am a little nervous.
Yes, I was a smoker for 40 yrs too. I am 54 now. I quit too with this cancer scare. It's crazy..I still crave one as least once a day!! but there is no way, if will smoke again. Not after all this.
I hope you will be able to start swallowing soon. It will come. Everyone is different in that area. We should keep in touch, seeing as we are quite a bit alike:)
God Bless you too!
Cindy0 -
I don't know what's wrongDazey said:in the middle
Hi Debbie - I finished treatment in the middle the week between you and Cindy(10/26/09). My treatment involved only radiation 30 IMRT - six weeks. It is now January 15 and I can report the mucous has diminished considerably. I have been taking some glutamine as recommended by others on this site. No burning marks on my neck - some "turkey neck" (I hope Ratface reports back soon on the massage therapy to ameliorate that issue.) Some pain on swallowing - but is is mainly related to food texture and certain spices. Again, it is getting better. By the end of each day, my throat is very sore from talking (too much?) and eating. I have had occasional choking times when a food gets caught in a spot (what I shame we don't have the ability to "detour" when swallowing.) I am usually able to either cough it out or use water to pass it on its way or just keep swallowing. I know how scary it can be; I do make note of what the texture was and try to come up with ways to change it. Keep plugging along. I know Cindy is also pushing through all of this. It can be a downer - definitely. I do know that in the beginning, it seemed like it would never be better. Today, I can say each week shows improvement - not necessarily each day,but that is okay I AM getting better. Just wanted to share my thoughts and let you know there are many who are on the same journey - just at different "ports" at different times. Dazey
I don't know what's wrong with me, Dazey. But I have been so down for the last month or so. Even though I am slowly getting better. Nothing seems to please me. I go to see my family Dr. on Mon. He feels it's quite normal, because of what my (our) body recently went through.
Cindy0 -
I understandfishingirl said:I don't know what's wrong
I don't know what's wrong with me, Dazey. But I have been so down for the last month or so. Even though I am slowly getting better. Nothing seems to please me. I go to see my family Dr. on Mon. He feels it's quite normal, because of what my (our) body recently went through.
Cindy
I totally understand this feeling. We were hit with very heavy medical issues. Depending upon our life experience, we view this through our "customized" lens. We ask questions, we listen, we hear wonderful stories about success. Will that be me? We hear some sad stories of recurrence. Will that be me? We filter the information and it stays in the back of our minds and it has an impact.
The physical effects of the different treatments impact us in many ways. It is really hard to get excited about going out to dinner with friends when I worry that the food will get stuck in my throat and I might cause a scene expelling it. It is hard to go shopping when I start coughing jags in the store and see people pulling away for fear I am contagious.
We now live with many concerns and it is hard to get excited about things. BUT - we cannot allow it to immobilize us. Keep your head where your feet are. Don't project too far in the future. Try to do one thing each day that is pleasant and painless. This could be situational or it could need a a little medication to get over this. Check with your doctor about that. Spiritual connection (of your choosing) helps. My personal belief is that God did not cause this to happen, but God is sure going to be by my side to get me through it. The angels that are sent my way have been wonderful throughout this and I thank God everyday for the help ( and have since before any medical issues occurred.)
You can private message me on this site. I am now much better at checking the email account.
Remember - keep your head where your feet are and know that you are not alone. Dazey0 -
Thanks for being soDazey said:I understand
I totally understand this feeling. We were hit with very heavy medical issues. Depending upon our life experience, we view this through our "customized" lens. We ask questions, we listen, we hear wonderful stories about success. Will that be me? We hear some sad stories of recurrence. Will that be me? We filter the information and it stays in the back of our minds and it has an impact.
The physical effects of the different treatments impact us in many ways. It is really hard to get excited about going out to dinner with friends when I worry that the food will get stuck in my throat and I might cause a scene expelling it. It is hard to go shopping when I start coughing jags in the store and see people pulling away for fear I am contagious.
We now live with many concerns and it is hard to get excited about things. BUT - we cannot allow it to immobilize us. Keep your head where your feet are. Don't project too far in the future. Try to do one thing each day that is pleasant and painless. This could be situational or it could need a a little medication to get over this. Check with your doctor about that. Spiritual connection (of your choosing) helps. My personal belief is that God did not cause this to happen, but God is sure going to be by my side to get me through it. The angels that are sent my way have been wonderful throughout this and I thank God everyday for the help ( and have since before any medical issues occurred.)
You can private message me on this site. I am now much better at checking the email account.
Remember - keep your head where your feet are and know that you are not alone. Dazey
Thanks for being so understanding. My family and freinds try and understand, but I know that they really don't. They do try and help as much as they can.
You're right about going to dinner and starting to choke, or going to the mall. lol!! That made me laugh!
I also, don't blame God. And I know He is with me at all times. And he's probably think "Shes's not trying hard enough" And I ask God in Jesus's name everyday to help me get better, in mind and heart. Thanks for being my freind. You have helped me already by listening and understanding:) I just LOVE going to this upbeat forum! Everyone is so nice.
Love Cindy0 -
Hi Cathy,What your boyfriend might experence through this ordeal
I will direct you to a recent post in the expressions gallery as a story, Throat Cancer and it's side effects, from a suvivor. Posted by Buck_H Jan. 17 2010. it was my feeble attempt to tell what I went through. It took me until now to get up the nerve to write the story.0 -
newbie joiningcatya88 said:thanks Joe
Thanks Joe
He is getting a nausea med with his chemo and two hours of hydration afterwards. We think it's a good thing.
Cathy
Hi, everyone.
I've read through everyone's comments here and cannot begin to tell you how lucky I feel that there are caring people out there to help us thorugh this. My husband was diagnosed stage 4 in his tonsil with one involved lymph node. He started Chemo and Radiation Jan.4th - cysplatin for 6 hours on Monday, and then the pump for the rest of the week with the 5FU? (appropriate acronym, I thought). Also, Rad every day.
He lost taste late last week, and has just about stopped eating. He opted to not get the feeding tube,but after reading these posts, I am going to talk to him abut gettng it while he still has the strength.He isn't working - he has a great boss who just finished surgery for Prostate Cancer last year.
I am worried about the mouth and throat sores, and his reaction to not being able to eat. He sleeps sittng up during the week because the port/pump gets in the way, and so is very tired.
Looking for suggestions on food/drink - he says water or soda tastes like chemicals, but can keep milk down fairly well.
And Thank You - Susan0 -
Your replyfishingirl said:Hi Debbie! I am sooo happy
Hi Debbie! I am sooo happy for you that you are cancer free!!! I went to my Radiation Oncologist last month, and he put a camera down my throat, and said it looked beautful! BUT..I get an MRI done this Feb5, and that will comfirm everything. So, I am a little nervous.
Yes, I was a smoker for 40 yrs too. I am 54 now. I quit too with this cancer scare. It's crazy..I still crave one as least once a day!! but there is no way, if will smoke again. Not after all this.
I hope you will be able to start swallowing soon. It will come. Everyone is different in that area. We should keep in touch, seeing as we are quite a bit alike:)
God Bless you too!
Cindy
Cindy, thank you for replying. We have more in common, I will be 54 this May. I don't ever crave a cig and like you, I'd never smoke again. I didn't think I'd be able to quit but Cancer gives you strength you didn't know you had.
For all who read this, I pray for you to get thru this and be cancer FREE soon.
God Bless.
Debbie0 -
Thanks and another questionBuck_H said:Hi Cathy,What your boyfriend might experence through this ordeal
I will direct you to a recent post in the expressions gallery as a story, Throat Cancer and it's side effects, from a suvivor. Posted by Buck_H Jan. 17 2010. it was my feeble attempt to tell what I went through. It took me until now to get up the nerve to write the story.
Thanks Buck, I will check out your story and others.
So Tim finishes radiation and chemo the first or second week of February. What's next? Is there a rest period, more radiation and chemo?
His pain is a little more intense but he is getting stronger meds today, for when it gets real bad as well as a new formula of Magic Mouthwash. He continues to do well with his attitude and is managing the current pain with the current meds.
The hospital is having a conference this month on Head & Neck Cancer and there will be survivors speaking on how they made it to the other side, how the coped, what worked and what didn't.
For Hondo: Tim's dentist gave him trays with a fluoride treatment to put in them, he wears them 10 minutes a day.
Thanks everyone - Cathy0 -
also been way downfishingirl said:Thanks for being so
Thanks for being so understanding. My family and freinds try and understand, but I know that they really don't. They do try and help as much as they can.
You're right about going to dinner and starting to choke, or going to the mall. lol!! That made me laugh!
I also, don't blame God. And I know He is with me at all times. And he's probably think "Shes's not trying hard enough" And I ask God in Jesus's name everyday to help me get better, in mind and heart. Thanks for being my freind. You have helped me already by listening and understanding:) I just LOVE going to this upbeat forum! Everyone is so nice.
Love Cindy
Cindy & Dazey, hi girls. I have also been down. I do believe part of it is for worrying about the cancer really being gone and if it will come back. The other part is like you mentioned, Cindy, our family and friends try to understand and really worry about us but they truly have no idea. I feel like I'm so alone and I don't want to upset my family and friends so I do my best to not let them know. I have been feeling alone for some time now. Everyone is going on with his/her life but I'm stuck trying to get through the recovery process and worring. I do worry about the doctor being correct when he says it is gone and I also worry a LOT about it coming back. I honestly don't think I dould go thru 35 more trmnts of rad.
Please don't think I'm ungrateful b/c I am. I really worry about God becoming mad at me. I am VERY VERY thankful to God for getting me thru my trmnts and for healing me! It is my faith in God that got me thru the trmnts and I will always be thankful and always let God know that. I just don't know how to fight this depression. I'm alreay under the care of a phychiatrist and taking several meds which I have been for a year.
Thank you for letting me say how I feel and again, please don't think I'm not thankful because I promise I am.
Sincerely,
Debbie0 -
No, thank You, Debbie!!debbiejeanne said:also been way down
Cindy & Dazey, hi girls. I have also been down. I do believe part of it is for worrying about the cancer really being gone and if it will come back. The other part is like you mentioned, Cindy, our family and friends try to understand and really worry about us but they truly have no idea. I feel like I'm so alone and I don't want to upset my family and friends so I do my best to not let them know. I have been feeling alone for some time now. Everyone is going on with his/her life but I'm stuck trying to get through the recovery process and worring. I do worry about the doctor being correct when he says it is gone and I also worry a LOT about it coming back. I honestly don't think I dould go thru 35 more trmnts of rad.
Please don't think I'm ungrateful b/c I am. I really worry about God becoming mad at me. I am VERY VERY thankful to God for getting me thru my trmnts and for healing me! It is my faith in God that got me thru the trmnts and I will always be thankful and always let God know that. I just don't know how to fight this depression. I'm alreay under the care of a phychiatrist and taking several meds which I have been for a year.
Thank you for letting me say how I feel and again, please don't think I'm not thankful because I promise I am.
Sincerely,
Debbie
You are not alone in regards to fighting your depression. I am not sure why but reading about your feelings give me credibility for my own thoughts. I cannot give you any answers but I share yours concerns. Come here and share your thoughts. PM me if you are not comfortable with an open forum. What ever you choose be sure to share the feelings. Don't let the feelings over load you as they did me. Coming to this site was as good a decision as the hospital, type of treatments, doctors, and nurses that I choose to help aide me in my battle to over come my cancer.
I know there is always hope! My faith in God gives that to me. I pray that it does this for you as well. Hang in there!
cwcad0 -
Praying For Your Boyfriendcatya88 said:Thanks and another question
Thanks Buck, I will check out your story and others.
So Tim finishes radiation and chemo the first or second week of February. What's next? Is there a rest period, more radiation and chemo?
His pain is a little more intense but he is getting stronger meds today, for when it gets real bad as well as a new formula of Magic Mouthwash. He continues to do well with his attitude and is managing the current pain with the current meds.
The hospital is having a conference this month on Head & Neck Cancer and there will be survivors speaking on how they made it to the other side, how the coped, what worked and what didn't.
For Hondo: Tim's dentist gave him trays with a fluoride treatment to put in them, he wears them 10 minutes a day.
Thanks everyone - Cathy
Hi Cathy: I had a radical left neck dissection in July 2003 as a result of squamous cell carcinoma (SCC). I was originally diagnosed in 2001 with SCC on the left side of my tongue. I had surgery at that time; no radiation or chemo required. I visited my ENT every few months for a follow-up visit and was doing fine.
In 2003, I had a lump pop up on the left side of my neck which turned out to be a reoccurrence of SCC, requiring that I have a radical left neck dissection followed by radiation treatments which ended in December 2003. My surgery lasted about 11 hours; the first 2-3 hours the ENT spent scoping everything he could reach looking for additional cancer spots. He found none. He also removed my tonsils during this surgery as a precautionary measure. I spent two nights in the hospital and recovered quickly from the surgery. The most pain I had was from the tonsillectomy; not the neck dissection. I did not have a feeding tube during radiation treatments but did have to take pain medication for a few months in order to tolerate swallowing. I have numbness from my left ear down to my left shoulder, my left arm is weak and I cannot lift it over my head and my face and neck area is a little "lopsided" from the surgery but I have no problem with that; considering the alternative. I had difficulty swallowing and choking on food for a while after radiation treatments but my ENT dilated my esophagus (under mild sedation) twice over the past 6 years and that has helped a lot.
My radiation treatments were rough but I made it through and found a lot of helpful advice on these boards. It's been a long time since I logged in but I'm back and want to provide help to others where I can.
I know cancer is a very scary situation and can only advise that you keep yourself informed and keep your faith in God. With my first cancer occurrence, my 5 year survival rate was at 85-90%. After the second occurrence the cancer had spread to the lymph nodes in my neck so my 5 year survival rate dropped to about 40%. This past December (2009), I reached my 6 year mark without another occurrence. So many positive things have come my way as a result of having cancer and while I would not want to experience it again, I have no regrets about having to travel this journey and I hope I can help others along in the process.
While my doctor will not declare me "cancer free"; he feels I am out of the woods. There's no guarantee that it won't come back again, especially since it got into my lymph nodes. But I refuse to spend whatever time I have left here on earth worrying about something I can do nothing about. I've put this in God's hand and have prepared myself to die as best I can but I practice "guarded optimism" that God will allow me more time on this earth to be with my family and friends. However, I'm fully aware that it's not my call and that His will - will be done.
Be strong, go with God! Please don't hesitate to contact me if I can be of any assistance.
Kathy0 -
Hellocatya88 said:Thanks and another question
Thanks Buck, I will check out your story and others.
So Tim finishes radiation and chemo the first or second week of February. What's next? Is there a rest period, more radiation and chemo?
His pain is a little more intense but he is getting stronger meds today, for when it gets real bad as well as a new formula of Magic Mouthwash. He continues to do well with his attitude and is managing the current pain with the current meds.
The hospital is having a conference this month on Head & Neck Cancer and there will be survivors speaking on how they made it to the other side, how the coped, what worked and what didn't.
For Hondo: Tim's dentist gave him trays with a fluoride treatment to put in them, he wears them 10 minutes a day.
Thanks everyone - Cathy
I too had a tongue cancer diagnosis last June 2009. I had 35 radiation treatments that ended on October 16 th. and 2 chemo treatments.
Three months after radiation I still cannot drink or swallow anything. The feeding tube is my lifeline. I have begun putting real food into a food processor and getting it into my body. I don;t want to be delayed eating because my stomach is too sensitive. So far vegetables, cream of wheat and chicken and rice soup have been easy for me to handle thru the tube.
My question is how long did it take you to swallow water and food?
I still have pain in the back of my throat about the size of a nickel. It feels very raw and hurts. Anyone with this type of issues?
For dry mouth at night I have found Biotene Oral Balance Gel to help.
Thanks0
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