Just getting started

Glenna M said:

Same treatment plan...
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

Glenna M said:

Stay at home mom...
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

lady4darknight said:

Getting started with trache
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