Hi Carol - welcome to the family.

Chris said above what I was going to tell you. Your and his job today is to get through TODAY, not to worry about tomorrow. I have heard it be so bad for some that they had to focus on getting through the next HOUR. It's uncomfortable, it's lousy, it's a thousand other bad adjectives, but somehow we persevere and get through it; and having done so gives us strength and hope and helps us get through tomorrow. Eventually, we come out the other end of the tunnel and get back to something resembling a worthwhile life.

I too had a lot of mucous problems; there were days when I wondered if today is the day I choke on that mucous and have an emergency right here on the treatment table. I found what worked for me was to lay there very still, don't get nervous and don't fidget. Breath slowly, deeply and evenly through my nose and through my mouth if necessary. Really slow, rhythmic breathing meant the flow of air past the mucous wouldn't cause me to feel it and thus prevent the sensation of choking. Don't try to swallow the mucous every few seconds. That it often can't be swallowed also creates the sensation of something foreign being in his throat, ie the sensation of choking. It worked for me every time, even on the days when I thought it wouldn't.

Have him tell his RT that he is having problems with mucous and possible choking and to keep a close eye on him during treatment via the camera pointed at the patient. I often wondered how I would get her attention quickly if needed. Would waving my arms around wildly do the job or did I need a better signal. I even thought of banging my hand on the side of the treatment head, but that would work only if I could reach it. Just today I had the idea to take a flashlight with me. That light beam causing a flash across her monitor might get her attention better and faster. I can see disadvantages to the flashlight idea, so it's probably better to just talk to her about it. I'm sure she has had problem mucous patients before and has some ideas of how to make it better.

About anti-depressants, sometimes our male programming is our own worst enemy. Maybe the best way to approach it is to suggest he take a very light dose of anti-depressant, the goal being to just get him started taking something to "help a little" or just enough to "take the edge off". Call it a starter dose if necessary; see if you can get the doctor to use the same phrase. Once the idea has been broached he may be more receptive to changing the dosage to what is really needed. I understand where he may be coming from about this. I feel the same way; I would never take anti-depressants (or so I tell myself). But, then I didn't have the level of side effects he is having, I pretty much knew with certainty I would get through today and every day and do so with minimal discomfort.

Lastly, get him to start reading the forum threads himself. Just hearing how other patients got through it helped me a lot. I'm sure you are doing a great job as caregiver but he is missing out on a lot by not being a forum member himself. If he isn't comfortable using the computer, maybe you have to help a little with forum navigation. But, there is a lot of valuable information on this forum that he needs to see with his own eyes.

Keep fighting, both of you will get through this and come out the other end. We wiil be here with you all the way through.

Tony

Hi Carol, here are a few things to try to get to the end of treatment and the months beyond -- have him sleep reclining on a pillow instead of flat on the bed, put a humidifier near the bed and get a Waterpik. Set it on low and use the tongue scraper attachment. Put in a little of the magic mouthwash in the water and have him clean out the gunk before bedtime. Also, do it as often as needed during the day. It clears out the mucous.

My husband has the same diagnosis as yours and he said to me again and again that the Waterpik was really helpful.

If you husband gets very nauseous from the Cisplatin, make sure that you tell the oncologist before the next infusion. They can put in more anti-emetic medication in the infusion as well as give you a prescription for pills that you can take home. Get ahead of the nausea, don't wait till he starts throwing up.

All the very best.

Thank you all! Well, we went in this morning and reported to chemo. His labs came back awful and the chemo doc said, "no go." We spend the day in the hydration lab getting him pumped up full of saline and potassium instead of poison. haha While I am nervous about him not getting the third round of Cisplatin, I am a bit relieved. He is in pretty bad shape today. The deal breaker was his kidney function numbers. Lousy and we all know how hard Cisplatin is on kidneys. His WBC and Platelet counts were much too low, as well.

One good thing came out of today, he finally agreed to start handling the pain more aggressively. He has pretty bad reactions to all the normal pain meds. He gets headaches, nausea and itching. The chemo doc wrote out a prescription for a Fentanyl patch. I'm hopeful it will do the job.

He managed rads today. I think the combo of Zofran and his pretreatment Ativan helped really relax him. Thank you, Tony, for your wonderful suggestions on the whole mucous problem. I think that is our biggest hurdle at this moment. I am absolutely going to get him on here and have him try these suggestions. You all are fantastic and so generous to take your time and help us newbies. Hopefully, I can someday return the favor.

I didn't get my third cis, either. It's a booster not a killer so overall the radiation is more important. I was disappointed and paranoid too but it faired fine without it (so far) hugs

Thank you, Cheryl. I was kind of freaked out that he's not getting the final Cisplatin, but I feel better today. 5 more rads to go. I swear, he is getting worse as the hours pass the last 2 days. His mucositis is really kicking in since yesterday. I've been putting Oxycodone through his PEG and it is at least taking some of the edge off the pain and kind of knocking him out. He hasn't been sleeping or even napping through this whole treatment, so far. His chemo doctor mentioned trying a Fentanyl patch. My husband refused that idea but I think today's pain is making him rethink that decision. I'm putting in a call tomorrow to get a prescription.

Oxycodone, other pain meds as well, should not be crushed to be put through the peg, which can cause an overdose. There may be a liquid type, but I'm not familiar with that, and used the Fetynal patch when I needed more pain relief.

Good luck

Do understand that the majority of us suffer the greatest the 2 to 3 weeks AFTER radiation stops so I know you are trying but you must get a handle on his pain now because it will only get worse, perhaps even much worse. Many have used the patch which can be "dialed" up as the pain level increases and then dialed back down to safely get him off that drug.

I was told I could crush his oxycodone for his PEG by pain management team at the cancer center. I am always sure to ask before I put anything new through his PEG. Thank you for the warning, though. The chemo doctor just prescribed Fentanyl and Dilaudid. Our pharmacy was able to fill the Fentanyl patch but they didn't have the Dilaudid. That I haven't filled yet and would like to read up on what family of meds it's from before I fill it. The doctor explained that the Dilaudid was to be used for break through pain. I have to admit, I do get a bit nervous with these meds. Do you have to be weaned off of the Fentanyl patch?

[quote]Do you have to be weaned off of the Fentanyl patch?[/quote]Indeed you do. This is a very powerful drug so do stay and watch carefully the effects. The patches come in different dosages and is very effective.

Remember pain slows recovery and healing so do accept pain meds as there is no reason to suffer.

Good luck,
don

Be very careful with the fentayl patch. Read the directions thoroughly. The fentanyl patch is the strongest pain killer available. Never fold, bend tear, cut, rip or damage the patch. Always put it in a different place, changing it every 72 hours. It will take about 24 hours before it starts to work. When wearing the patch do not take long hot showers or baths as very hot water could trigger too much medication being released causing an over-dose. You will slowly build up a tolerance and also have to be stepped down on this stuff. It worked great for me and many others on the forum. It also can make him tired and constipated.

Its like everything else, just a tool to get your husband thru this.

Best wishes!