I haven't posted here since the initial diagonosis. We decided on MD Anderson and he had six weeks of weekly chemo of paxitaxol and carboplatin. He did well and we flew back and forth for the treatment. He continued to work and even played golf a bit. The treatments were on Monday and usually by Thursday he started to feel fatigued and had some other side effects. We moved to temporary housing in an apartment in Houston on March 5. It seems like it has gone down hill. After only a few radiation treatments he felt worse. The schedule is radiation five days a week for six weeks and twice a day the last five days a total of 35 IMRT. He gets Eributux once a week and has mouth sores, fatigue, weakness, and nausea. I feel like a cheerleader trying to come up with things to eat/drink. We have Ensure, Boost and Carnation VHC. It takes an hour to get 8oz down. Everything tastes bad and/or burns his mouth. I've tried creamed soups, milkshakes, etc. He is depressed and so am I. I wish there was something I could do to make this go away. I know it isn't rational, but it kills me to see him in pain, weak and so miserable. I am strong around him, but underneath I just want to cry. I wish there was a time machine to go at warp speed and have the treatment over. He is only 2 1/2 into the radiation and from what I read it will get worse. We have numerous mouth swishes for the sores, and nausea pills, but nothing seems to really work. I am trying to be strong, but I am falling apart when I am alone. I never thought I'd like to go to the grocery store, it gets me out and I can forget the mess. I thank God I am in an apartment with a separate living room, kitchen and patio. I can let him sleep while I do other things, but don't want to go too far in case he needs me. I'm sorry, I just need to vent. I talk to friends at home, but feel very alone no one can really understand. We have friends in Houston, but with the mucousitis he certainly doesn't feel social. Oh well, this too shall pass.

DCS,

Glad that you posted you are not alone. Everyone is here to help.

By your post it sounds like Your husband is not on a feeding tube. There is some medicine you can get from Dr. that will numb the mouth. It will help some. Sorry I do not recall the name of it.

I had feeding tube and it made it a lot easier. I do remember all the mouth pain. Keep swishing with the mouth sore meds. Make sure you tell your Radiologist about any problems you are having.

Try and be good to your self. This is hard on you as well. If you need some help with depression ask Dr. Will be thinking of you. Vent anytime you want !! We realize how stressful all this can be.

Keep reading here on OCF and find more information that will help you. It might help to brighten your day.

Take care,
Diane

DCS,
I had to wrap my teeth and gums in gauze before radiation to help with the mouth sores. Just place the gauze over the teeth and down into the gums wherever there is pain. I even had the floride trays and still had bad mouth sores. The gauze really seemed to help. My sores were from the scattering of radiation as mine was tonsil. Check with the docs to see how this might help. I also rinsed my mouth with salt water twice daily and the nurses sprayed my mouth after treatment with saline. Good luck and hang in there. It won't be easy but time will heal this mess too.

Rob J.

Dear DCS- Please, don't go so long between posts, it is very therapudic to get the every day challanges off your chest- plus, you can get some excellent feedback whenever a problem rears it's ugly head! Remember someone here has most likely been through what you all are dealing with and can give you support. As to the effect this is having on you, the best I can say is "Welcome to the Caregiver's Club". Being at my husband's side during his 2 yr.battle with this disease is the toughest challange I have faced in my 66+ yrs. on this earth. Do not discount what this is doing to you because you both have many miles to go and you will need to be there 24\7 for awhile, and that is not easy and it is physically and emotionally draining. If you would like to talk, send me your ph # and I will call you, and I am sure other caregivers would also. You are right that it is easy to feel alone with this disease-but not here- there are many people who will help you both through this. None of us knows to what level of courage and strenght we can rise until called upon to do it. Sending you best wishes. Amy in the Ozarks

If he begins to lose weight he needs to move from oral eating to PEG. Please do not wait too long to do this, proper nutrition is going to be part of his ability to avoid infections, maintain activity levels, and heal properly after each treatment. Ingrid and I moved to Houston as well in a small apt. for my treatments. I think that I slept most of the time away and Ingrid rented every movie known to man from Blockbuster in the first 7 weeks of my treatments. The first couple of weeks of radiation are usually no big deal, at least physically. But after that it gets progressively worse, and will continue to do so until several weeks after treatment ends. There is no easy way through this, it is a day at a time process. Just remember that nutrition equals a better journey. The PEG eliminates the lack of nutrition or hydration issue and the sooner that he is back to normal for nutritional intake the stronger he will be in all respects.

Hello DSC,

My heart goes out to you. I too am a caregiver, (to my mom) but I have no doubt that dealing with a spouse is much harder than a parent. He is the one you choose to spend your life with, made all your plans with and want to grow old with. The fear, frustation, confusion and anger are familar to all of us though. A husband of a friend of mine is a 5 year survivor of cancer and I remember her saying when he was diagnosed that when you hear the word "cancer" you are sucked into a whole different world that "outsiders" just don't get. Well, she was right, I did not "get it" until now. People ask questions, mean well, and offer help, but sometimes it just doesn't help much.

When others say it will get worse before it gets better, they aren't kidding. But there are things that you can do to help....like others have said, nutrition and hydration are BIG. You will probably have to fight your husband to keep him eating and drinking, but if he isn't Brian is so right...a PEG may be needed and dont wait too long...things can go down hill fast. My mom really did NOT want the PEG but thank God she listened to the doc and agreed to one before treatment started, as she quit eating about 2-3 weeks into her 7 weeks of treatment. Someone had posted here about putting a humidifier in the room and we tried it and it really helped with the mouth dryness at night in bed. Another thing that helped was Biotene toothpaste (does not have the drying agent most toothpastes have) and mouth wash. One thing I did not hear our docs address much was mouth care as far as bacteria build up. When your saliva glands are not working there is nothing to continually wash the bacteria out of your mouth, and if your husband stops drinking much orally all that nasty stuff sits in his mouth....the Biotene helps with that too....I would suggest you really keep on him about drinking water orally though....my mom did not keep up with that and is still having difficulty swallowing 10 weeks later....like her Doc said, if she had forced herself to drink more during treatment, she would be doing better now. Hard to do, but really it does help.

Is there a support group at the treatment center you are at? If so, you might want to use it. Some, like myself, have a hard time letting it out with strangers face to face, thats why reading posts here have helped so much. Journaling might be helpful too. Writing about your feelings, reading it and throwing it out afterwards can be theraputic too!

Hang in there....you can get through this...and you are so right...This too shall pass...not fast enought, but it will pass, I promise.

God Bless,
Patti

DCS - Add my name to the "Caregivers Club". There is so much compassion here as well as a wealth of information. During my son's Tx, what saved my sanity and kept me from falling off that depression cliff to which I was hanging on by my fingernails at times - was checking back here every day, several times a day. Going out (as you mentioned) even if just to the grocery store and taking some deep breaths in the fresh air really helps. When nothing seems to work for the person you are caring for, you have to keep trying because you will find something that does! And sometimes, something that quits working at one point, will work again when tried later. My son had used the "Magic Mouthwash" but after a while, it didn't work anymore. Then, later, when he went back to it, it did work! Another thing for dry mouth is "Stoppers 4 Dry Mouth" or if that is not available, the Biotene products. You are doing a great job - and things really do get better! Check back often and let us know what's happening.

DCS - I'm in line for you right behind the others. I was my husband's caregiver and I thought we would never get to where we are today and it has already been 7 months out of treatment and he is sooooo much better. He is happy, working and the little (and I mean little in comparison to what you are in right now) things like dry mouth and taste issues are all works in progress. Our marriage is at another level which I didn't think could get any higher.
So, hang in there, you are doing great. Just stay in touch with us as often as possible.

Please listen about the PEG tube, it made all the difference in the world in my husband's healing. I believe it should be mandatory for all patients before treatment. They never asked us - they just scheduled it and said be there. You can also use a gravity bag and your husband can be feeding himself slowly while he is resting, watching TV, etc. My husband lived in his lazy-boy chair - I don't think he slept in our bed much during his treatment...especially when the mucusitis gets difficult. On that note, a portable suction machine helped greatly - the hospital can arrange for that and your insurance will pick up the rental. Be strong and keep looking down that road - the light at the end of the tunnel is there. If I/we can help, just contact me.
--------------------------------------------
Marty
CG to husband,SCC Stage 4, left tonsil,3 lymph nodes,HPV+, dx 4/06, TX IMRT X 35, cisplatin/tarceva X35, neck dissection 11/06

Thank all of you so very much for your support. I have spent many hours reading posts on this site. I have gained much knowledge and have a humidifer, Biotene mouthwash and toothpaste, artificial saliva, etc. I am aware of the suction machine when and if needed. We did speak to the RO about the PEG and see him and the CO tomorrow and will try to get the gastro guy's appointment moved up. Hopefully the PEG will cut down my nagging about getting something in him. I read about emptying the stomach contents to measure and that sounds gross. Of course The spitoune of the empty Ensure bottle is charming. He now says he feels like a lumpin his throat and is gagging. We are at Anderson now with his second to last Eributux. I have asked about support groups for us here and am still working on that. The SPOHNC chapter in Houston doesn't meet until mid April, but I will contact the leader, thanks for the lead. I knew that for about two weeks after radiation stops it is like a roast coming out of the oven it keeps cooking. When does one start to see the light? I am morethan happy to talk live time to anyone. I will let them know if it is a bad time. Contact me here through my email and I will send you my phone numbers.

By the way how do you email people personally? my email is [email protected]

DCS,

If you want to send a private message to someone on the forum, look at the icons to the right of the date and time on that person's post. The icon that is the third one over (with two people and an envelope) is the one you click on to start that post.

Also, since this is a public forum, you may want to delete your phone numbers from your previous posts.

If you haven't done this yet, you might want to check out the FAQ's (near the top of the screen) to get more general info on using the forum.

Cathy

I emailed you. I hope to hear back from you. I, too, am at MD Anderson right now as a caregiver.

Angela