A friend of mine told me about this site. I have a sore for over year a half, went to see ENT on Jan 5, 2009, not much was done, finally I was sent to do a needle biopsy on the left lymph node and on August 14, I was told that I have cancer on my throat. I am a 53 years old male never smoke nor drink. My radiation and chemo treatment started on Oct 6, I am currently close to the mid-point of the process, the effect of radiation is starting to show, I was thinking about using a feeding tube as I have great difficulty in swallowing.

Welcome to OCF Stanley. You'll definitely find everything you need right here.

Hi Stanley:

Welcome, I guess, to the forum. I'm fairly new myself, but believe me I am so glad I found this site. So many of the members share wonderful ideas/suggestions/solutions/experiences with everyone and it really helps to know you are not alone. I was told at the begining of my radiation/chemo treatments that I should get a feeding tube, which I reluctantly did. However, I didn't regret it later when I had such a hard time trying to swallow and couldn't. I kept mine for about 6 - 8 months. I had tonsil cancer 11/07 and treatments ended 1/08. Thank God, so far all my follow-up CAT and PET scans have been clear. Good luck to you and I'll keep watching for your news.
julieann

I, too, had a PEG tube and still lost 50 lbs. Would have faded away completely without it. Unfortunately, the truth is things are going to get worse before they get better. Now, 20 months out from treatment, I'm doing very well and eating almost normally. Best of luck to you on this rocky road.

I didn't have a tube but the maim reason was that I have had surgery on my esophagus and they wrapped 1/3 of my stomache around my esophagus to help stop reflux which was very bad and was eating my esophagus. T o put a tube in for neourishment, the Dr that did the Nissen Fundiplication would have tio be the one to indo the stomache and lower it back from my chest into my stomache. THen insert the tube. This is a very serious operation. I lost 70 lns during my rads, chemo and rad seed implants. Get it if you can becuase right now I am paying for it.

Stanley,

Were you tested for HPV?

Re the PEG, I didn't have one and I made it just barely. Would I get one if I was had my experience knowledge and was about to start radiation, probably not. The most important thing is to keep ingesting tons of calories and water each and every day.

It can get worse from now until about 3 weeks post Tx so hang in there.

I had a PEG put in prior to starting treatment and still lost 40+ pounds. Can't imagine if I had not had it. It was not a problem to use or care for and when I was done with it, it was a painless removal.

Welcome Stanley to our group. I had a peg at the rec. of my cancer care nurses & also a medi-port. I am so glad I had both about the 2nd wk. of Tx. I also couldn't eat, my tongue was so sore from the rad. I lost 45Lbs (Best part of getting cancer!) But I could NOT have survived with out the peg. I never even had the full amount I should have,(only 3 or 4 cans per day) I was never hungry. (that is a huge help when people around you are eating such yummy food & you can't eat anything (because your mouth is like a war zone !) The medi-port is a implant under the collar bone, where blood can be accessed from i.e. IV's I say, take advantage of modern medicine! They knock you out anyway, when you wake up the worst is over! Best of Luck, Stay Strong!

I definitely endorse the port. That is the one thing I wish they had made me put in.

I elected not to have a port, and considering that I had to have an IV every day (1/wk for chemo and related, 5x/wk for Amifostine), the repeated sticks got old. However, I also did not have to worry about maintaining the port, etc.

I did not have a PEG, but I am likely the exception and not the rule. My side effects were not as severe as many, despite the fact that I had 39 radiation treatments. I had to force myself to eat, with substantial assistance from the wife, and had a limited range of choices toward the end. I lost about 32 pounds, but was able to resume regular eating pretty quickly.

Very individual choice, but lots of wisdom here.

Not too much to do about "maintaining the port." During treatment, the infusion nurses do all that is needed. When treatment ends and before you choose to have the port out, it simply needs to be flushed about every 6 weeks.

Bill still raves about how nice it was to have that port even for routine bloodwork.

Deb

Hi Jeff, I also had the 5x/wk-Amifostine. Is your mouth very dry? My RO said I may not see the results for 2-4 years after treatment! My mouth is still very dry-I take water with me all day, home or going out. How long did you have the port in for? My RO says needs to stay in until @least 6/20/10 (2nd yr aniversary) Thanks! Dianne

I had a PEG put in after the first two weeks as I had a pretty severe reaction ( mouth sores, etc. ) to the radiation. I "only" lost 25 lbs. and found it a lifesaver for pouring down calories, nutrients, and medications when throat conditions only got worse. Good luck on your decision and with the remaining treatements. You have LOTS of company here.

Mouth gets dry, but water does fine. Keep in mind I had both sub-mandibular salivary glands removed in the neck dissection, so my issues are not only due to radiation. I am about 2.3 years out from end of treatment, and some things get better(taste, dry mouth), others get worse (neck & shoulder muscles), but all in all not too bad.

hi guys my dads having his op on monday the doc said they were going to remove half his face dont know how to feel dont wana cry dont think ill stop anything advice anything you could say would love to here whats the best thing i can do for him

Stara,

I responded to your PM so look for it.

All
Stanley is a colleague of mine, and I'm the "friend" who suggested he come to the OCF. I have been staying in close contact with him as he enters the toughest part of his treatment this week. He's a very, very sick guy right now...I will update everyone as I hear of any changes.

BTW...............it's been WAAY too long since I've posted, and it's good to be back home!
Wayne

Hey Wayne,

Great to see you back here. Hope YOU are doing well.

Since Stanley hasn't been back since he first posted, I assume that he must be feeling pretty lousy. Hopefully, he can get back here to soak up some of the good advice posted above.

Jerry
Good to see you too! Im doing well, hope the same is true for you.
All, Stanley is a VERY sick guy. He was hospitalized following his chemo treatment again, last week, and this week is entering his 4th week of rad. Today was another day in hospital for him so that they could rehydrate him a bit. I'm hoping to hear from him or his wife later today, and will try and keep everyone up to speed
Lastly...I hope EVERYONE is doing well! We have been very busy over the past year battling the beast, with an Uncle and an Aunt losing their fight, and my Father in Law now in hospice, with his battle coming to an end as well. My thoughts frequently turn to my friends here at OCF, even though time seldom allows me the luxury of getting caught up
Wayne

So sorry to hear about your friend Stanley and your relatives. It boggles my mind how many people I hear about almost daily coming down with some form of cancer.

I hope you hear some good news about Stanley and that your FIL is comfortable.

Wayne,

Nice to hear from you again even if the news about Stanley is not good. Did he ever get the Peg? I also had a very rough time with nausea which I think was more about the chemo, Cisplatin, than the rad but they didn't want to stop the chemo. That was also before recent favorable studies about HPV+ SCC. Did he ever get tested for HPV?

Hey wayne
so good to see your handle back on the boards again.Life goes on though and it never seems to get any easier does it.

All,

An overdue update on Stanley. So far: he's finished week four of rads. He's suffering from all of those wonderful side effects we've each endured; burns, loss of taste, pain...over and over and over again. He struggled with both rounds of chemo, initially decided not to have a third however he had a change of heart. His doctors determined last week that a third round of chemo was not warranted, so that was good news. He's a long way from being "well", but there is a faint light at the end of that long, dark "treatment tunnel".

On another front, my father in law is losing his fight with kidney cancer. The prognosis is grim; a matter of a couple of days at best. We're spending as much time as we possibly can with him...........
God, I HATE this disease!!!!!!!!!!!!!!!!!!!

Wayne,

Sorry to hear that your FIL is losing the battle. it sure has been arough time for your family. I hope he isn't suffering.

Glad to hear that Stanley has the light in view. You are a good friend, for sure.