Hello, I am new to this board and this cancer. My husband was diagnosed with SCC (TxN2bM0) on September 17th. Did a modified neck discetion same day and started radiation and chemo in Oct. Finished first round of Cisplatin 3 weeks ago and will do second round next week. Also had the 12th of 33 radiation treatments today(IMRT). My question is how do we get through the next 4 weeks? He is already having trouble swallowing and doesn't feel much like eating because of taste issues as well as pain. He also is starting to get a thick mucous in his mouth and throat. I can't imagine another 4 weeks of this getting progressively worse. How do people cope? We are feeling very discouraged knowing we still have such a long way to go....

Hello there and welcome to OCF.

It sounds as if your husbands diagnosis and treatment have all happened very quickly,and you havent had a great deal of time to find out too much information about his treatment and its implications before you were dropped in to the deep end.
A few questions for you
Where exactly is his SCC? I see you have put Tx in his diagnosis ,does this mean he has an unknown primary? and do you know the staging of his disease?
How old is he?
Does he have a history of tobacco and alcohol use?
Has he been fitted with any sort of nutriton aid such as a PEG tube?
What is making you feel discouraged the most?

The members of this forum have nearly all been in your shoes and will surely be able to walk you through the next few weeks, and maybe even months,which will almost certainly be difficult and at times make you feel a little despondant,but i am sure you will get a great deal of benefit from being able to share your experiences and ask any questions that arise.

Radiation and chemo being run concurrently will produce a miriad of what may seem like insurmountable side effects ,which unfortunately do not peak until some three to four weeks after the IMRT has finished and nutrition,weight loss,depression and pain are all the ovewhelming problems you have to face over the course of the treatment.

Write again with some more detailed information if you can and then perhaps you can get some specific advice to overcome the hurdles you are already having to face,but in general,pain and nutrition are the most important to deal with.

Is your husband able to eat anything ?Does he have any sort of nutritional Supplement such as Ensure or boost? What is he taking for the pain?
Sorry to bombard you with so many questions,but without knowing what he is already on it is difficult to advise you on how to help him through what is going to be a very frustarating time.

Please try not to get despondant, you have found the right place to get all the support you need to help you both through this. You will need to be strong as his carer,and also need a support network of your own( see caregivers board for when you need emotional or practical support)so once again welcome and i hope we can help.

liz

He is 50 and yes, the primary is unknown. They did several biopsies in surgery, but were not able to find it. He had a PEG tube put in the day before we started chemo. He smoked for a few years, but that was about 25 years ago and drinks the occassional beer, but not daily by any means. He is taking compazine (sp) and adavan and just started on ensure....was very happy with that this morning. He was able to drink it. The doctor said he is stage 3, he had an enlarged lymph node in his neck that we thankfully had checked! The doctor first said give it a few months and see if it goes down, but after a few weeks we didn't feel comfortable waiting any longer. I guess the worst part so far is the increasing discomfort he is in and knowing it is going to get worse for many more weeks. He is going to ask about the "magic" mouthwash today and is going to be getting more fluids today at his check-up. Thanks for your help, I am so glad to have found this forum!!!!

Hi spk07-
I remember having this exact thought during radiation- around week 4, how am I going to get through it if it's going to keep getting worse?
I was on an all-ensure diet already at that point, but swallowing was so painful I wasn't drinking/eating enough and kept getting dehydrated.
I got through it by getting on more pain medication, a fentanyl patch which you wear on your arm and it gives constant medication, plus there were fast-acting fentanyl lozenges which I would take directly before it was time to drink the ensure. Three times a day I would sit down and drink 2 ensures and as much water as I could. I wrote down how much I ate and drank each day so I knew I had enough. For the taste issues, you gotta just think of the food as medicine, and know that the taste buds will come back!
The downside was that I could not drive once I was on the fentanyl, but it was worth it.
He's got to keep focused that this is a temporary thing and he WILL get back to eating pain free. When you're going through it though it feels like forever though!
For the mucous, rinsing his mouth/gargling with water mixed with baking soda and a little salt(or no salt) will help. This helps at night so much, I kept a glass by the bedside and would rinse and then spit into another glass so I wouldn't have to get up.
Hang in there,
Melissa

It can seem overwhelming, but you cannot look at the whole thing at once. Just get through today. I did 39 IMRT and 8 chemo treatments, and treated each one like its own little battle. Get in the car, drive to the CCC, get the IV, etc.

Try to follow everything the doctors say to the letter. Use the salt/baking soda rinse 3,4,5 times a day. Drink lots of water, and when he thinks he can't drink any more, give him another bottle. That really helps far more than you would think.

I ate the entire time, though often it was mashed potatoes and gravy, or something of similar consistency. The taste thing is not fun, but can be overcome. The key is to not focus on how bad it tastes now, but think of what the "normal" taste is. The mind is a strange critter, and it can help taste along by "filling in" the taste it expects for that food. Doesn't work all the time, or with all foods, but it helped me.

The worsening of side effects is not a foregone conclusion. Yes, many people have profound side effects. However, many do not. Nip the pain in the bud now, use the magic mouthwash, and try to get him to be as active as possible. I worked through my entire course of tratement, which was a godsend for my mental state. Even if it is just taking a walk around the block, enjoying a hobby, etc. Anything to keep the mind engaged and occupied.

HTH

skp07-
One more thing, if he's drinking a lot of ensure, it will make him constipated because there's no fiber in it. You can buy "Benefiber" at the grocery store and mix it in with the ensure, it's tasteless and has no texture. It's 1000X better than metemucil and others.
If he gets on pain meds or goes to the PEG tube he will definitly need to manage the constipation and the nurses can tell you all
about what to do.
Jeff, when I here about you folks who worked I gotta salute you!! I was an admin though so looking and sounding nice was part of my job and that went out the window!
Mel

Thanks to all of you for the tips and encouragement. I will make sure to get the fiber. I will also encourage him to get the pain meds. We are going to go this weekend and get supplies for a project for him to work on when he feels up to it just for something to keep him busy. I work and the kids are in school so he is home alone all day which doesn't help.

SKP,

Have you checked your insurance plan??? Many plans cover the liquid supplements and equipment needed to "eat" with the tube. Our plan included a nutritionist's oversight to calculate how many calories Bill needed a day for optimal intake...then the company delivered the supplement (Nutren 2.0 with fiber)and supplies (gauze,tape,syringes, etc.) to the house...very helpful.

Everyone is right...getting thru this treatment is one day at a time, good pain control, and good nutrition/hydration..the latter being hugely important.

Good luck to you both...we are all here to help you thru this nightmare. Deb

Hi, SPK07- another caregiver chiming in- if the thick mucous continues for a week, ask for a portable suction maching prescription- it will help alot to clear his mouth of mucous.Since he has many more rad. tx's to go, this is all likely to get worse for awhile- hard for youall to hear- but most folks here have gotten through it. You need to be prepared to what "might happen" so you are not caught by surprise. Don't know which one of you is the more vocal, but someone needs to be on top of symptoms as they occur and tell the Docs or nurses when help is needed- especially before a weekend. That can save alot of grief. I would suggest you get some unflavored Pedialyte in the pantry [in the kids section of gro stores], some Welches grape juice, Gatoraid,and start seriously tracking the amount of liquids [in ounces] he is consuming daily. Always count the water you flush the peg with after feedings or pain meds, and have him use liquids between peg nutrition feedings.Do you have a goal set each day for intake? The next 4 weeks are doable, but will be much easier if you are doing a good chart and he is understanding about why it is all so important to his getting well. It really is a "team effort"! Good luck, Amy in the Ozarks

Hello, I just got back from the pharmacy. The doctor gave him the fentanyl patches. He is sleeping so I will wait to have him try one until he wakes up. I will check with the insurance tomorrow to see if any of the "eating" supplies are covered. He meets with a nutritionist every week at the radiation office, she is the one that gave him the Ensure. She didn't mention keeping track of everything he eats/drinks, but I think that is a great idea.
Again, thanks for all of the suggestions!!