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Feeding Tube

pennynl4
Posts: 49
Joined: Jun 2009

Do most patients have a tube put in prior to radiation and chemo treatments? My husband has squamous cell carcinoma of the tongue? He had surgery to remove a lymph node. He already had the port put in last week. Or do some doctors see how much weight you lose first?

Thanks again everyone,
Penny

lolojldunn
Posts: 37
Joined: Apr 2008

Hi Penny,
I can only speak from my experience. I was diagnosed as stage 4 SCC of the right tonsil. The tonsil was surgically removed. Shortly thereafter, my port was installed at a day surgery center. Approximately a week later, I revisited the same day surgery facility to have the tube placed. They held me over night at the hospital as a precautionary measure to make sure there were no issues with the tube. This all occurred prior to beginning any radiation or chemo treatment. I have read other posts here where the tube was installed after beginning treatment. My Radiation Oncologist wanted all the surgeries to take place before I had any issues with the impending treatments. As I progressed through my treatments I was sure glad that I had the port and tube matters taken care of before radiation and chemo.
Wishing you and your husband the very best.
Jim

pennynl4
Posts: 49
Joined: Jun 2009

Thank you for your best wishes. How is it all going for you now and how long did you have treatment? Hope this is all behind you.

Good luck to you.
Penny

lolojldunn
Posts: 37
Joined: Apr 2008

Hi Penny.
I just meet with my Medical Oncologist and ENT last week. I got a clean bill of health from both. On August 16th, I'll be two years post treatment.
My Radiation Oncologist wanted to treat me very aggressively. I had a total of 56 radiation treatments. Two a day for 28 days.
Chemo was Cisplatin once a week for 6 weeks.
I had an IV every day in the morning before my first radiation treatment. I was given Amifostine (sp) suspended in the IV. This was to save my saliva glands from the radiation. Did it work? Don't know that I can honestly answer that question. The Docs seem to think that it did. However, the water bottle is always with me. I hate to think how dry it would have been with out the Amifostine...

Wishing you the Best!
Jim

Terry_s wife
Posts: 21
Joined: Mar 2009

I can tell you what was done with my husband. His oncologist was adamant that he have the port and peg tube placed BEFORE any treatment was done. He said he didn't want Terry to be in the middle of either treatment and realize he needed them. Both of his were placed at the same time as an outpatient. Terry still ate when wanted to and was able (throat cancer) but he also had the tube if needed. One thing that helped too was that as he went through treatment and couldn't swallow as well, all of his meds could be given through the tube. When he first started treatment he kinda tied the tube in a bow and taped it in place. It was truly beneficial to him. paula

pennynl4
Posts: 49
Joined: Jun 2009

Thanks Paula for your comments. It really helps to hear everyone's comments because there are so many questions and concerns. We will see the doctor this week and will have our questions ready.

How is your husband now? I hope he is done with treatment and recovering. Does he still have the tube?

Good luck to you both.
Penny

Terry_s wife
Posts: 21
Joined: Mar 2009

Terry passed away almost a year ago (June 30, 2008). He had complications from an infection in his port that he never really bounced back from. I wish you well as you go forward. You'll get a lot of support from people on this site. Best wishes. Paula

pennynl4
Posts: 49
Joined: Jun 2009

I am so sorry Paula about your husband. I hadn't had much time to read everyone's profile. This discussion board is a good support system and I am glad I found it. In fact, I didn't make a profile....didn't know much about it when I first joined.

How have you been doing this past year? I am sure every day was a real challenge. I hope you have some good friends and family around to help you through this. So glad you found this site. My husband doesn't get on it, but I do and it helps me so much.

My husband started his first chemo yesterday and will start radiation next week. He did rather well.

I won't be on this much for a few days because we are leaving on a weekend trip before his radiation starts.

Good luck to you and will talk more later,
Penny

sunflower5468
Posts: 10
Joined: Jun 2009

My feeding tube was put in 1 week before the radiation and chemo began because I couldn't eat from the pain. I have stage 4, small cell squamous carcinoma of the lympth nodes and tongue. To date I have lost 50 pounds but I had lost about 30 before the feeding tube was put in. My doctors did not want me to lose any more weight but they were concerned because I couldn't swallow. I am one of those patients who was real upset about the feeding tube at first, but now I'm glad I did it. Best of luck and I hope this helps.

pennynl4
Posts: 49
Joined: Jun 2009

Thank you for your input. It sounds like you were diagnosed with the same type of cancer my husband has. He is to start chemo on June 24 and radiation sometime this week.When did you start treatment and how long do you have to go for treatment?

Good luck to you.

sunflower5468
Posts: 10
Joined: Jun 2009

Good morning Penny. Yes, it does sound like your husband and myself are going through the same thing. Believe me. I feel for him and you. I started radiation in February 09 and had 33 radiation treatments that I have completed. I also took chemo treatments while on the radiation treatments which I finished. Now, I am taking my second session of chemo. I have 12 more weeks of chemo now. Honestly Penny, I feel like I've been to hell and back hpwever; I keep holding on and praying that I will get well again. I will keep you, your husband and the others here in my prayers. Best of luck to you and write me anytime you need a shoulder to cry or lean on,

pennynl4
Posts: 49
Joined: Jun 2009

Thank you for your words of encouragement.

My husband will have to go through 6 weeks of chemo and 7 weeks of radiation. Did the doctors tell you that you would have to go through two sessions of chemo? And what kind of chemo do you have? He was going to have the Cysplat (not sure of the spelling), but they told him a couple of weeks ago that he would have a different one, one that he wouldn't lose his hair or have to be flushed out before and after chemo.

I am afraid that my husband will want to give up during this whole ordeal because of the pain he will be going through. He is so scared. I try to give him pep talks and remind him how stubborn he is and that he can do this and that he has to do this. All his life he has been a real fighter. But I don't see that in him as much lately. (Can't blame him).

There are cancer survivors on this website who have had this same type of cancer and are telling all of us that they DID get through this and you and I have to believe this and our faith in God will get us through this. THIS IS BEHIND THEM AND IT WILL BE BEHIND US TOO.

Thank you for your prayers and I will also be praying for you and each and everyone who is battling this horrible disease.

Penny

sunflower5468
Posts: 10
Joined: Jun 2009

Thank you Penny for your words of wisdom and encouragement. From the start, my doctor did tell me that I woulld need more chemo. I am also on cisplatin and erbitux. I can not remember what I took with the first session of chemo. I am still loosing my hair and that's been hard on me. As soon as I started radiation and chemo, I cut my hair and donated it to Locks of Love. I figured these innocent children needed it more than I did. I, like your husband wanted to give up more than once and I have always been a fighter. I really wanted to die after I started my 2nd week of radiation because the pain was unbearable. All I did was cry all the time. With the love of my family and friends, they refused to let me give up. So finally I got up one day and said "I want to live to be with the people who love me." So I have. It's been hard and challenging but I'm doing it. Stand by your husband. He really needs you but please take care of you. You can not take care of him if you don't take care of yourself. Write me anytime. I'm a good listener.

Fireman
Posts: 28
Joined: Jan 2009

The experience of the Oncologist directs him to suggest the tube at the beginning of treatment. Nutrition aids in healing. If you get to a point that your nutrition declines due to pain in your mouth or throat, or even due to lack of appetite, your healing suffers. My experience is I thought I was tough and was not going to need a tube and I did not want to have the scar on my body. As I said before, that decision almost killed me as I was hospitalized due to malnutrition and dehydration. I had the tube put in and finally started listening to my oncologist who had my best interest in mind even if I didn't. To me it wasn't a painful procedure, but everyone has a different pain threshold. The uncomfortable feeling will subside in a few days. Sitting and sleeping in a recliner was very helpful for me. In hindsite, yes, I would have had the tube put in before radiation began. I was one of those who had to learn the hard way after losing 50 pounds.

pennynl4
Posts: 49
Joined: Jun 2009

Thank you for your feedback. My husband isn't against a feeding tube. He had planned on it after the first Oncologist said he would be getting one. But it was the other Oncologist who we saw for radiation who said he didn't think it would be necessary.That's why were were a little confused. We will talk to both doctors this week again.

He is still having pain where the port was put in last week.....it was a week ago last Thursday.)

So how are you doing now? I hope that this horrible stuff is behind you.

Penny

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Penny, it would be foolish of any doctor, I think, who considers that your hub is going to lose a great deal of weight, or even MIGHT lose a great deal of weight, to wait until that happens to have a tube inserted.

As a rule, and if circumstances permit, you want to take care of surgeries while you are still in optimum health.

Me, I had my tube inserted while I was already under for my lengthy tongue/neck surgery. I never felt a thing.

It may be that his doctors do not believe he will have issues with swallowing, due to the nature of his surgery and treatment.

Cancer treatment is not far removed from fingerprinting or DNA analysis, Penny: we are unique.

In the meantime, from your various posts I get the feeling you do not trust your husband's doctors. If your hub feels the same way, he should get new doctors. If he doesn't feel that way, you should join him in respecting the choices made by his doctors.

Wishing your husband and his family the best,

Joe

pennynl4
Posts: 49
Joined: Jun 2009

Thanks Joe for your feedback. We are both very happy with the doctors and my husband and I will talk to the doctors this coming week. My husband is not concerned about the feeding tube as I am. I just don't want him to lose any more weight.

He lost weight from his radical neck dissection on May 20th because he was so sick from the anesthesia. As of yet, he hasn't gained that weight back.He is to start chemo on June 24 and radiation this week sometime, not quite sure what date yet. His mask was made on Thursday, June 18. But I am sure the doctors will not let him lose too much weight.

By the way, how are you doing now and are you back to your normal energy level?

You have given a lot of good advice and encouragement to me and to everyone who reads your posts and comments.

Penny

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Penny,

I only respond because I hope it will give hope to your husband (and to thank you for the kind words). I am now NED: No Evidence of Disease.

I had surgery in October of 2005, followed by 35 radiation treatments (I did 33 of them) along with simultaneous chemotherapy (cisplatin in my case).

I did very well until I wondered of my family doctor why I was still coughing (albeit a small one) nearly two years after I had quit smoking. A subsequent CAT scan led my Oncologist (and all other doctors I had) to determine that I had a minimum of 10 months to live.

That proved to be incorrect (it was, for the most part a lung infection incorrectly diagnosed). Even so, there WAS a growth in the lowest lobe of my right lung that proved to be more squamous cell cancer. They could not determine whether it was new or metastasis and so did a lobectomy.

I am, again, NED, as I write this. That episode began in June of 2007 and ended, more or less, in August of 2008, when I got my first NED pronouncement (following that lobectomy, another surgery in the same lung to remove MSSA, a staph infection, and more chemotherapy, this time carboplatin and taxol).

I am back to normal, I suppose, although there are people on this site who will claim that I have never been normal :). It is a new normal, to be sure. I do not eat like I did before the surgery, nowhere near it. That can be agonizing, in more ways than one. It impacts social activities, for example, more than one might expect.

I deal with it.

I am doing well, Penny, and do not recommend the alternative to anything I've had to endure or that your husband will have to go through.

Your husband is indeed tougher than he thinks he is, and he will get through it. It is what it is. We deal with it, and we move on, ultimately, because, to be honest, our choices are rather limited.

You be sure to take care of yourself, too. Too often, you, the caregiver, forget that you must care for yourself as well.

Best wishes to you and your husband and your family and friends.

Take care,

Joe

denistd's picture
denistd
Posts: 517
Joined: Apr 2009

I have just completed me course of radiation and chemo for larynx cancer. I had 35 radiation treatments and 3 chemos's (cisplatin). I had my peg put in a week before the start. The doctor also ordered a supply of high calorie cans of food and syringes. Thank God. I was lucky in that the first week nothing seemed so bad, I ate normally. Soon the throat and nausea took over my feeding habits. The most important thing the patient can do is to MAINTAIN as much weight as possible. 2,000 calories a day was my target. By week three I had lost 5 lbs. My Onc said to crank up the peg feeding. I managed to get through all of the treatments. My last radiation was 10 days ago and my last chemo was 10 days ago. During treatment I only lost 5lbs total. Believe eating orally does become a challengs, I took no food through my mouth the last week. In still feel like garbage but am seeing improvements every day. I am eating orally again, today I had a pancake this morning, a yogurt for lunch and a pork chop and mash potatoes and gravy for dinner. I also have had 1200 calories of formula through my peg. Also, Cisplatin in high doses is really toxic, I was kept in overnight at the hospital for the three chemo's. Staying really hydrated will help the effects that it has on your kidneys and bladder. Emend is an anti-nausea and vomiting drug that will help your husband get over the stomach problems. I drink about 32 ounces of water a day. I am just getting to where I can drink thin fluids once again. The radiation and chemo will still be active for 2 to 3 weeks after treatments end. I wish you luck. Denis

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