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kristin31
Posts: 10
Joined: Jun 2010

Hi, my dad was diagnosed in mid june with SCC in his larynx. He is stage IVA. He is going to have 35 rads and 3 rounds chemo. He was set to start treatment a couple of weeks ago but went to his dentist and was told he should have all 25 of his teeth extracted. It was a huge shock but after hearing what the alternative could be w/ having ORN we were thankful we had a dentist that cared enough to offer my dad the best advice. So after recovering from the teeth removal he got his peg tube put in last thursday and was all set to go for treatment. They took the CT scan for the simulation and said it had changed slightly since the last one and are now recommending that he gets a breathing tube. Has anyone else had a similar situation? We really don't know what effects he wlll experience from having a breathing tube in. The Dr. said it would be temporary but it is still scary and we are not sure if he will need it for sure. It is difficult for him to breathe laying down, but is ok while sitting up. (He also has to sit up to sleep) The doctors said that once radiation starts the tumor is likely to swell and that will make it even harder for him to breathe and could possibly block his airway completely. So it is precautionary to avoid having to have an emergency one put in and delaying treatment once it starts which would mess everything up. We are just overwhelmed and want him to be able to just get his treatments started. We live right out of Atlanta and he is going to Emory. If there is anyone here that can give advice on this please do! Thanks so much!

Kristin

nicki74
Posts: 55
Joined: Feb 2010

hi kristin, my father was diagnosed back in february with stage 4 tongue cancer, and just finished his last chemo and radiation treatment about 5weeks ago.. he too had to have teeth removed, feeding tube and a trach put in, which they say is temporary.... my dad's tumor on his tongue was so large that he was about 2weeks ago from having it block his airway and plus yes, the radiation will cause more swelling.. so what the doctor is saying to you know sounds pretty accurate...

i have found the survivors on this website to be amazing! ask away and everyone on here will help you out as much as they can, survivors as well as caregivers, or concerned daughters like ourselves...

best of luck to you and your family.. in my thoughts and prayers..

nicki

kristin31
Posts: 10
Joined: Jun 2010

Thanks so much! That makes me feel much better! How hard is the trach to take care of? I don't really know much about it, I think that is why it scares me so much. I am definitely glad I found this website! It helps so much just to hear other stories and to be encouraged by them! Thanks again for sharing and my thoughts and prayers are with your family as well!

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Kristin,

It sounds like your dad and I have the same type of cancer and the same treatment plan. I was diagnosed in May '09 with SCC supraglottic laryngeal cancer, staged T3N0M0, which basically means stage 3 with no lymph nodes involved. I was diagnosed 2 weeks prior to the laryngeal cancer with NSCLC adenocarcinoma in my left lung so my treatment plan may be slightly different than your dads.

From what I have been told by my ENT and what I have read, there are three areas usually affected by SCC cancer and I have listed these below. I did not have a trach tube but the location of your dad's cancer and the size of the tumor may be the reason his doctors are installing a trach. I personally believe it is better to be safe than sorry and have this prior to treatment. I have had a trach before - non cancer related - and found it relatively easy to care for.

Supraglottis: The upper part of the larynx above the vocal cords, including the epiglottis.
Glottis: The middle part of the larynx where the vocal cords are located.
Subglottis: The lower part of the larynx between the vocal cords and the trachea (windpipe).

My treatment plan was; 2 days of cisplatin in 3 week cycles and radiation treatment everyday (except weekends) for 7 weeks. I won't sugarcoat things and say it was an easy process to go through but I will tell you that if I had to do it all over again - I WOULD!! Everyone reacts to treatment differently, some get all of the side effects and some of us have relatively mild ones. My biggest problem was the fatigue, I slept a lot during my 4 months of treatment - I had an extra month of treatments for my lung. I also experienced some nausea but they have drugs for that. My oncologist calls cisplatin the "big guns" of chemo drugs and he was amazed that I never lost my hair, which is one of the side effects of having this drug.

One of the most important things your father can do before (and during treatment) is eat, he should try to gain weight if possible as most of us lost weight during treatment. He also needs to drink at least 8 glasses of water a day to stay hydrated, it is very easy to become dehydrated during treatment and that IS NOT a good thing to have happen.

You did not mention a mask - has your dad had his made yet?? It can be a scary thing, especially if you are claustrophobic, like me, but they gave me Ativan to take prior to each radiation treatment and I managed to go through all 35 radiation treatments without spazzing out ;-)

Sorry this post is so long - and believe me there is much more that I could tell you - so if you have anymore questions please feel free to ask. Myself and many others here will be happy to help you through this tough road you and your dad are about to travel.

Please tell your dad to stay calm, this is all doable. I am now 10 months post treatment and still in remission, due for another CT scan on Aug. 2nd and I am very sure that I will hear that beautiful word - REMISSION - when I get the results on the 6th.

My best to you and your dad - you WILL both get through this!!!

Stay strong,
Glenna

kristin31
Posts: 10
Joined: Jun 2010

Thanks for responding! My dad did have his mask made, and he did fine with it. I think he was more worried about getting a breathing tube than anything. Luckily my mom is a stay at home wife and can take care of him. That is so awesome that you are in remission! Congratulations. My dad is strong so I know he will pull through, but it is so encouraging to hear testimonies like these! I greatly appreciate all the advice! We have heard he needs to eat everything he can, so he is doing the best he can for not having teeth, and he is diabetic which makes things a little more difficult since most soft foods are sweet. Did you put regular food in your peg tube, or did you just use drinks like Boost? He isn't really using it yet, my mom and I were just wondering if it was ok to use other liquified foods besides the Boost.

I will definitely be keeping you in my thoughts and prayers for your next scan! I think one of the best things you can do is to have a positive outlook and attitude about this and you definitely seem to have just that! Thanks for the encouragement!

Kristin

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

It's great that your mom is at home as your dad will definitely be needing her. Caregiving is a tough job for all of you but I know you will all do fine.

Yes, being diabetic will make his food selections more difficult. No, you do not put regular foods in the peg tube, everything has to be in liquid form. The oncologist's office should be prescribing liquid nourishment for use in your dad's tube. I was given a prescription (don't remember the name of mine)and a medical supply company delivered everything to my door - cans of supplement, gauze pads, tape and syringes. They knew how many cans I was to use each day and they would ship more supplies to me every few weeks until I called to tell them that I was having my tube removed and would no longer need them. Because your dad is diabetic he will probably get a special formula which is specifically for diabetics.

I can understand your dad having a difficult time eating because of having his teeth removed. A lot of us were on soft foods during our treatments because it was the only thing we were comfortable swallowing because of the side effects of the radiation. I'm not sure what foods he can eat because of his diabetes but some of the ones I found I could tolerate were - cream of wheat, scrambled eggs, mashed potatoes with plenty of gravy, soups and pudding. He may also want to drink Boost or Ensure. I drank 2 or 3 bottles of the Ensure Plus everyday to help with the nutrition and my daily calorie intake. Ensure and Boost can be used in the peg tube but please be sure to flush the tube before and after using it. Your gastroenterologist should give you all of the information you need about using the tube and caring for it. If he doesn't please make sure you ask him about this. His surgeon should also give him complete instructions on how to care for his trach, it is a little scary at first but is usually quite easy to care for.

It sounds like you are all strong and your dad will have a great support system. I know you will all do well and in a few months you will be able to relax as your dad starts to get stronger. Keeping a positive attitude around your dad will help him more than you will ever know, during treatment we all need as much support and encouragement as we can get. It helps us to believe and also helps to keep us from getting depressed.

You and your family will also be in my prayers.
Glenna

kristin31
Posts: 10
Joined: Jun 2010

Thanks Glenna. Yes, we are very blessed that my mom can take care of him and I live very close so I will be able to help too. They gave all of the information for the peg tube and are checking to see if his insurance will cover the cost of the food. I know it all has to be liquid, I just didn't know if anyone used other foods that were liquid like soup/broth or something like that. I think we have the peg tube covered, now we will have to figure all this stuff out about the breathing tube...

All of us are trying to stay positive, we know that things could be much worse and we are full of faith and hope! :) Thanks for the info! This site is such a blessing!

Kristin

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi again, I forgot to mention one very important thing in my earlier post. Even when your dad is using the feeding tube he should try to swallow as often as possible to keep his throat muscles working. Soups, broth and water should be taken by mouth if possible, even if it is just a few swallows several times a day. Some people have put other "liquified" foods in their tube, I personally did not only because I tried to eat some softer foods continually throughout my treatments. Plus I was always worried that I would clog my tube although it is usually quite easy to unclog by flushing it out. I was too much of a wimp to try this and find out so I stuck to the canned supplement supplied to me. You will soon learn that I'm a BIG wimp ;-) Your dad did fine with having the mask fitted and I had to take an Ativan - lol.

I'm sure there are many others on here who will respond and tell you of foods they put in their tubes, as I said, I just preferred to play it safe. If your dad's insurance does not cover the cost of the canned supplements please post and let us know as there are other organizations who help people in this situation. I believe someone said that Ensure was going to supply them, at no cost, enough cases of their product to see him through his treatment. I will see if I can find that post and let you know about it. I get a little confused as to where I read things as I post on both the Head and Neck forum and the Lung cancer forum. That plus I'm getting old and forgetful, although I prefer to use the phrase "chemo brain".

Take care and keep us updated.
Glenna

kristin31
Posts: 10
Joined: Jun 2010

Haha, you sound like my mom, she is always worried like that lol. The doctors told him they would rather him never use his tube, because if he doesn't he will recover faster (as long as he is maintaining weight without it), but it is there if he has to use it. They told us he needs to do all he can to keep from losing his swallow. He is supposed to meet with a speech pathologist next week. Did you see one of those? My dad doesn't really want to go because he is having to go to so many other appointments, but I told him it was probably really important to learn the tips and exercises they teach you.

I will look through some of the past posts to see if I can find the info on the Ensure if he doesn't get approved. From what I hear "chemo brain" is real. I use to blame all my forgetfulness on being pregnant and then having a baby haha. She's 2 now though so that doesn't work anymore. :) His next appointment is this monday to meet with the surgeon to see for sure if he needs the trach. I will let you know! Thanks for the help!

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Kristin, yes, I saw a speech therapist about half way through my treatment. I had started to lose my voice again so they sent me as a precaution and she gave me several exercises to do. I can understand his feelings of not wanting another appointment, it certainly seems like every day there is another doctor to see.

I'm sure I sound like your mom - LOL - that's all part of being a mother, we are constant worriers ;-) It's in our job description!!

Take care and stay in touch,
Glenna

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Hi Kristin, When my tumor was first discovered, the first thing that was done was a trache put in. I was having some problems breathing laying down but a CT should I only had about 1/8 of my airway open from the tumor. It was strange waking up in the hospital breathing from my neck but other than that it was like everything else, just learn. Coughing is very important at the beginning to keep all the gunk from getting stuck. I use a warm air humidifier hooked around the trache at night to get moisture and keep things loose. The hospital should set you up with a home medical equipment place and they should provide the trache care kits and the humidifier and everything. The inner cannula will come out for easy cleaning. You need to make sure if he gets in the wind or the dust to cover it up so nothing flies in. I have had my trache 18 months now and it is second nature to me. I hope this helps. I am sure there are others here alot more experienced than I am but wanted to offer my help.

Debbie

kristin31
Posts: 10
Joined: Jun 2010

Hi Debbie! Thanks for all the info on the trach! I will definitely give my dad all the advice you told me. I am relieved to hear that it is easy to clean and take care of. Is eating affected at all with having one?

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