Hello, my name is Michele. My husband Tim was diagnosed with Oral Cancer 6/2012. His mouth didn't even start hurting until the 1st part of May. It has been a Nightmare of a Roller Coaster since then. I don't know all the rules of abbreviations yet, but here is some info about Tim's Cancer & Treatment: DX SCC 6/12, Stage 4- right side base of Tongue/Floor of Mouth: Floor of Mouth & 50% of Tongue removed w/Flap & Full Neck Dissection 7-18-12: Trek, Peg, & Port: RT 25X of33 w/Chemo 10X Cisplatin/Taxol). He has gone through 25 of 33 RT, but took 1 1/2 weeks off because of health side effects that both RT & Chemo Drs. agreed on. Now, he doesn't want to continue the 8 RTs of 33...We are worried if this is ok.
He has or had-
Constant Chronic Pain: Increased to Fentanyl Patches (150 mcg) and Deladid liquid. Morphine would not work.
Mucositis, Thrush, Choking, No Sleep because of choking: Carafate, Musinex with- 400Guaifenesin and Diflucan.
Nausea: Promethazine and Ondansetron
Bad Infection in Neck Dissection re-opening because of RT: 2 Antibiotics
Severe Blisters inside mouth and lips: MuGard(the only thing that has stopped the mouth sores), Triple Mix, and Baking Soda Mix
Outer Skin Burns and Blisters on face, neck, and chest: Silver Sulfadiazine and XClair
White and Red Blood counts are way off and he couldn�t do Chemo yesterday: Leukin and Iron shots 3 times a week now to stimulate blood counts, bone marrow, and hopefully build up immune system...also taking in allot of Power-Aid with Sodium and all other good stuff through Peg. If this doesn�t work by next week, then he will have to get a blood transfusion.
I have been blessed to find this Web-site to read since the first part of Tim's Cancer and throughout all Treatments. It has been so helpful. I would love to have any input. Thank you......

Michele,

Some of us breeze right through and some have a rough time of it. Looks like Tim is having a very rough time of it. Having said that, he didn't go through all of this just to have the treatment fail. He needs that complete round of radiation. Just 8 to go and he can make it. The worst has arrived and he now knows the animal he is confronting but quiting now could make all the effort and pain to date a waste of effort.

This is where you need to be strong for him and make sure he finishes the treatment.

We are here for you and Tim at any time so don't hesitate in checking in when you need to or just feel like unloading.

Sending a prayer your way.

Michele, welcome to OCF! So sorry to read of your husbands difficult road thru treatments.

Nutrition and hydration are the key to getting thru this. Every single day he must get 48 oz of water and 2500 calories. This is the minimum, anything less and he will have a much harder time than if he had gotten this amount. If he is not able to get 48 oz of water, he can get hydrated at the chemo lab with a doctors prescription. He should have prescription formula for his feeding tube. You can boost his calorie intake by adding Boost Very High Calorie which has 560 calories per can. Get a pump so it can run while he is sleeping. He just needs to be propped up on a couple pillows while he sleeps. This helps by taking the pressure off taking in so much during the day. By immediately increasing his calories and water intake, he will feel a little better. When I would get hydrated I would walk in feeling like I was dying and walk out a couple hours later feeling almost human again.

I know how hard it is and I wanted to quit too. My son gave me a wake up call when I told him I quit. He said something I will never forget "I will not sit back and watch my mother die because this is hard to do. You will finish this if I have to pick you up and carry you in myself". I am a single parent and my son was only 17 years old when I went thru this. He was right too, I had to finish or I was putting my life on the line. I struggled too, was hospitalized for malnutrition and dehydration, had the same open wounds on my neck as you described. Oral cancer treatments are truly barbaric but your husband MUST finish. His life really does depend on it. By quitting he has a high risk of a recurrence or the cancer not being completely gone. He needs to make up his mind that quitting is not an option, he must finish every single one of his treatments no matter what.

There are shots to help boost his white count. Chemo can be reduced or even cancelled but radiation must be finished.

Best wishes!!!!

Thank you so much for the info & uplift......I am fixing to clean his trek (clean it about 6-8 times/day now), put new collar on, & put lotions on.....then I am going to put my big girl britches on and have a really big talk with Tim...even if it takes the whole night.

Oh Michelle, I know that this is a very difficult road for you both.
I too am caregiver to my husband. I must agree with Kelly and Christine. Tim just has to complete his radiotherapy. This is the part of treatment that will kill the cancer cells. He can do without the final chemo as this is only a very small component of the treatment - it only adds about a 10% increase to chances of surviving. Many people do not complete the chemo due to low white cell counts in the blood. Kris only had 2 of his 3 scheduled Cisplatin doses. (Studies have shown no difference in outcomes between those who do 2 versus 3 doses of Cisplatin ).You really do not want to join the reoccurrance club.
Kris had a reoccurrence in February this year. When the Head and neck cancer team told him that his only option for surviving was a total glossectomy and laryngectomy he too said "No Way. I'm not doing that". It took me a lot of encouraging and cajoling and explaining that WE could do this together , before he agreed to this life changing treatment. Lots of love too. I am a firm believer in family love to get patients through. He needs to know that this affects you too. What happens to him , happens to you too. I told this to Kris often, and it's true. His cancer has happened to me. I have lived with this too. I have coped with it all. To be honest, I don't think Kris could have done this without me. Your Tim needs you to make him do this. It is not ok not to.
I'm trying to ensure you know how important you are in all this. You must now ensure he does agree to finish his radiotherapy. It is imperative for his survival.
Best wishes to you both. keep us posted.
Tammy

Hi Michele,
First of all I see they opened the new highway down there! WOW what a toll they are charging (My wife is from San Antonio and we lived in Marion for some time).
Everything that Christine said you can take to the bank, just don't let him quit no matter how tough it gets. If he won't or can't motivate himself you must keep him going.
I ended up burnt, exhausted, losing weight like crazy (Would wear sweats to treatment and put stuff in my pockets to try and inflate my weight; like that was going to work), felt like I would never catch the end of that ride, and when I couldn't seem to get through it my wife and family pushed!
I ended up sleeping with several pillows propping me up or in the recliner. We also kept a humidifier going which seemed to help some.
Hydration is HUGE and yes, as Christine stated, I visited the Chemo ward two to three times a week just for hydration through my port.
He HAS TO finish! He's came so far, just keep preaching that, even to yourself. There's light at the end and everyone on this board is here for you.
Warm Regards and prayers,
Steve

Oh Michele - I know it is soooo hard to see someone you love going through this kind of treatment torture! My son wanted to quit, too! One morning as I was helping him get ready for his Rad Tx he just announced he just couldn't go, and he wouldn't go. Lots of good suggestions above. For me, when he just sat there with his head in his hands, just giving up - I finally said, ok - but since he had an appointment with one of the doctors that day, I suggested we just take him to his doctor appointment and let him see what was happening in his mouth. So I got him there and the doctor did give him a "break" of a few days but he did resume the Rad Tx. You have to try different things until you hit on something that helps him to continue and to give him a "why" to keep fighting. My son also slept on a recliner with a humidifier and a plant mister to water spray his mouth. I like your comment about putting on your "big girl britches". When my son was being obstinate about cooperating, a beautiful caregiver here on OCF told me to "put my nurse from hell hat on" and I did, and it worked! Of course right after, I cried all the way home in the car. But my son did make it through and doing just great, now almost 6 years later! Hang in there Michele, you and Tim will make it through this!

Well, it has been a long night of no sleep...but Tim has agreed to start back up the RT/Chemo tomorrow. I really wish he would start today, but I didn't want to push him too far.
We have been married for 30 yrs...gone through our 20's, 30's, 40's, and now 50's together. We both feel that we are each others soul-mate. I have always tried to let Tim make his final decisions, while letting him know my thoughts. But this has been so hard on him (physically, mentally, & spiritually) and he just wants it to be done.
He has tried to have a positive attitude through all this, but the last few weeks...the hope in his eyes are gone. I feel so helpless, I want to do something to take away the this horrible pain.
I am going to ask about getting hydration through my port. And maybe quit the chemo and just finish the RT. Thank you all for your info & uplift.

No doubt this is tough on the both of you but as everyone has said he MUST finish his radiation to have any chance of beating his agressive cancer and he must not put off continuing the Tx as the delays only give the cancer a chance to multipy. This is not a time to let him make his own decisions when they may compromise his life. You must be the nurse from hell as my wife did and drag him to the finish line. My wife saved my life more than once during this nightmare and I am convinced that I would not be alive today if I had been a single man going thru this Tx making my own decisions.

Some medications make sleeping difficult. Check with your doctor or even the pharmacist about anything he may be taking that could interfere with his sleep. Its not easy towards the end of treatments when you are so sick and every little thing seems to be intensified causing you even more than normal discomfort. A humidifier will help as will taking a hot shower before he goes to bed. If he is on the fentanyl patch, use caution with the hot showers.

Im so glad you have found our forum. We will help you both thru the rest of his treatments and his recovery. Being a caregiver is not an easy job at all. Right now you must step up and you may have to push him harder than you are comfortable with to get his treatments finished.

If necessary, print out all the responses you have received and let him read them. It will probably be a real eye opener and seeing that others have suffered thru in order to save their lives may help to encourage Tim to continue.