Tongue & Throat Cancer

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

I'm so sorry to hear that
I'm so sorry to hear that you have been feeling so down. I haven't been feeling that great myself. I have to try everyday to be upbeat. With myself though, I think if/when my MRI scan comes up clean on Feb.5, some to those negative thoughts will leave me. I am pretty sure of that:)

Please try and stay positive, we are all in the same boat. And there is always someone out there a lot worse off. Take a look at Haiti. I know these are only words...but please try Deb. And keep on sharing this forum with everyone. We love to hear from you!

Cindy

dupals76 said:

newbie joining
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 - Susan

your husband
Hi Susan. As it states here everyone is different but I would strongly recommend the feeding tube. Eventually your husband will not be able to swallow foods or anything solid so he will really need it. I had throat cancer and I am 3 months out from my last radiation treatment. Oh yeah, the radiation is what is changeing the tastes of foods. I am just now getting to a point where I can try some foods. Chocolate tastes awful to me. The fooding tasting bad will get worse. The feeding tube is a small inconvenience but nothing that can't be tolerated. In fact, it is probably the easiest part of the treatment.
I'm sorry you and your husband have to go thru this but I believe this site will help you with info and other needs. People are very good about sharing their info and answering any questions you may have. I wish your husband the best and the most important part of the treatment is FAITH IN GOD!
God Bless,
Debbie

Dazey 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

thank you
Dazey, thank you so much for your post. I am still trying to eat but I'm very concience about eating also. I try to make sure I'm thinking about the food and that I have it chewed like baby food before I let it go down my throat. Now I seem to be fighting depression. I truly appreciate your post and your concern. Thanks for taking time for me.
Debbie

debbiejeanne said:

feelings
Hi cwcad. I appreciate your post. I find this site so helpful b/c we all know what were're fighting and what we are feeling. I don't know why but somtimes I just burst into tears when someone speaks to me. I try so hard to keep the tears from falling but I usually lose the battle. I had another crybaby day today...lol. I hope they will get better the more time passes.
I have noticed for the past month that my right are has a problem. When I bend it I feel something pulling very strong and I can't keep the arm bent b/c the pain is too much. My pinky and ring finger on that had are always numb. Did you ever have this problem with your treatment or after treatment? I have been trying not to worry about it but it seems to get worse each day. I'd be interested in hearing what you think about it and what I should do.
Thank you cw and good luck with your depression and all. I pray God will bless you today and everyday!
Debbie

Frozen Shoulder Syndrome
Dearest Debbie,

I'm sorry your feeling down dear, I find that this is a multi-sided battle were all fighting, affecting us on several fronts and coming at us from different angles.

My prayers are with you, asking God to give you the strength you need to stand firmly and boldly.

I don't know if the new joint pain you are feeling is what I'm going through right now but I will share what has happened in the last few days just in case it's related.

After my first surgery on Dec. 16th, when they removed my lymph node, I started having tenderness and soreness in my left shoulder, making it difficult to lift my arm very high.

Then, the other day while shopping, I tried to pull a plastic bag off a roll in the produce department and an amazing amount of pain shot through my shoulder. This has happened two more times since then and the doctors said that quite often after having surgery you can get what's called "Frozen Shoulder Syndrome" and it can take up to two years sometimes to heal. In my case I apparently had a bad case of it and I tore the tendons in my shoulder and now have to have another surgery to repair the damage.

After reading online more about it I learned that not only surgery will bring this on, that things like trauma, diabetes and some other conditions will also bring this syndrome on.

I guess what I'm suggesting is that you shouldn't ignore the pain, numbness and stiffness you are experiencing, as it is a serious condition. In my case I made it much worse by tearing the tendons.

God Bless you my dear.

Mike

Chefdaddy said:

Frozen Shoulder Syndrome
Dearest Debbie,

I'm sorry your feeling down dear, I find that this is a multi-sided battle were all fighting, affecting us on several fronts and coming at us from different angles.

My prayers are with you, asking God to give you the strength you need to stand firmly and boldly.

I don't know if the new joint pain you are feeling is what I'm going through right now but I will share what has happened in the last few days just in case it's related.

After my first surgery on Dec. 16th, when they removed my lymph node, I started having tenderness and soreness in my left shoulder, making it difficult to lift my arm very high.

Then, the other day while shopping, I tried to pull a plastic bag off a roll in the produce department and an amazing amount of pain shot through my shoulder. This has happened two more times since then and the doctors said that quite often after having surgery you can get what's called "Frozen Shoulder Syndrome" and it can take up to two years sometimes to heal. In my case I apparently had a bad case of it and I tore the tendons in my shoulder and now have to have another surgery to repair the damage.

After reading online more about it I learned that not only surgery will bring this on, that things like trauma, diabetes and some other conditions will also bring this syndrome on.

I guess what I'm suggesting is that you shouldn't ignore the pain, numbness and stiffness you are experiencing, as it is a serious condition. In my case I made it much worse by tearing the tendons.

God Bless you my dear.

Mike

doctor
thank you, Mike. I plan to call my reg doc tomorrow. Nobody here needs extra troulbles. God Bless you, MIke.
Debbie

fishingirl said:

Hi Enkido!
I also had 35
Hi Enkido!

I also had 35 radiation treatments, that finished off Oct. 28 of last yr. I haven't had my feeding tube for about a month now, but I find that when I eat, the top of my throat kind of burns and feels sore for a while. Plus under my tongue on the same side as the cancer was. I find I have to chew whatever I eat right down to a pulp, and it will still get stuck at the top of my throat. I'm hoping with time, that will go away.


take care,
Cindy

swallowing
hello, I just came back from the swallowing test, with barium fluids, and the therapist immediately recommended throat dilation. So now am waiting for call back from Doctor office for exam. I have heard from others that the dilation is helpful and not to uncomfortable.
Have you talked to your Doctor?
good luck,
Enkido

fishingirl 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

feb 5
Hi, Cindy, I just wanted to wish you the best on Feb 5 and let you know I'll be praying for you.
I go for my pet scan tomorrow. This is my 2nd one so I'm confiden all is fine.
Love and prayers,
Debbie

CajunEagle said:

Boost
Cathy,
You mentioned above that the hospital gave y'all some Boost samples. That stuff is a life saver (it was for me...and no, I don't sell it). Tim is going to have to have anywhere from 2000 to 2400 calories per day just to keep weight on. Get the Peg Tube and use that Boost. I realize it's a little more expensive, but get the Boost Plus. Boost has 240 calories, whereas Boost Plus has 360 calories per 8 ounces. I also use Two-Cal and it's 475 calories per 8 ounce can. I stick with Vanilla, cause to be honest, Butter Pecan and Chocolate are pretty bad when they come back up. But even that goes away after the last month of treatment. Hang in there.

my daughter needed to have
my daughter needed to have extra nutrients and she didn't have the money for boost so the social services at the hospital hooked her up with a nurse to come to the house and her insurance and the hospital helped her get "replete". she does not have a peg but she does have a tube that goes in her nose and down to the stomach. do you know of anyone who had mususitis (extra muscus in the throat) while taking radiation? the doctor said it will go away once the treatments are over. anyone?????????

hawk711 said:

tongue and neck cancer
I was recently diagnosed with a tongue cancer and two spots on my neck. I start chemo and rad in a week or so...The cancer is localized there and has not spread. I learned that after the PET scan. I feel confident in my doctors and the curing process, but am of course nervous. I don't have many questions yet but will have many I'm sure. Thanks to each of you for responding to us "newbies" who have joined the site.
I guess I do have a question. what is the highest calorie protein drink our there to keep up with my nutrition as this goes on ??? I don't want to try 4 if one of you know a good tasting one that is high in proteins and calories...
thanks again,
hawk aka Steve

Calories During Treatment
Hawk

I finished my treatment for stage IV SCC base of tongue and bilateral lymph nodes a year ago. I had 3 rounds of induction chemo and 35 IMRT (7000 Gy) concurrent with Carboplatin.

A few days after each round of chemo I was able to eat pretty much anything I wanted. The problem will be the radiation treatments. After about 10 treatments, my taste was almost gone and I had no desire to eat. A few weeks after that swallowing became extremely difficult. Somehow I got through without a PEG, so I tried many different drinks. I tried Carnation HVC (560 calories), but found it to be too thick to deal with. What I ended up living on for 6 months was Ensure Plus (360 calories) mixed in a blender with 1/2 a package of Carnation Instant Breakfast powder (which added about 75 calories), 1 scoop of protein powder (about another 75 calories) and a few ice cubes or some ice cream. Sometimes I would add a little coffee to the mix for somewhat of a different flavor. I tried creamed chicken and beef, but I preferred the Ensure mixture.

Each one of us has a different way of getting through our treatment, so you probably will need to experiment and try different things. I went from 150 lbs at the beginning of treatment to 122 lbs at the end, so remember that consuming calories during this ordeal (including post-treatment) will be your number one job.