This morning Dan said it hurt to swallow, but he ate today and says he doesn't need pain meds. Don't know if he's just being a tough guy or not. My question is was the swallowing a gradual thing or quick thing? Did it come with, before or after the mouth sores?
He has no mouth sores yet - just lots of coughing and mucous and gagging. He's started the mucinex and robitussin to try and thin it.
The taste buds are still bizarre - he is over-seasoning food and craving spicy food still. Drinks with carbonation are burning.
He's real tired. Lab work from yesterday (Friday) was great and MO said he was very pleased at how well he is doing at this stage.

Just wondering where you guys were at this point. From what I've read I think he's pretty blessed to be doing this well at this stage,, but that we don't need to lull ourselves into a false sense of hope because it will get bad soon...
He is on Salagen (Pilocarpine) 4 x a day to try and help stay on top of the dry mouth issue since Dan's salivary gland is where the cancer is - and where the radiation is of course targeted.
Forgot another question - Dan's recently started BP meds, once a day and I read somewhere that Cisplatin lowers your BP... any thoughts on that? With the new BP meds and Cisplatin - his BP on Friday was still high 170/100.

Michelle I did not have real problems with swallowing until week 5. I had problems before that but is was thrush. In contrast I did not have mucous until late in the game, it was worst after the rads were over.... goes to show you how variable things are.
Make sure he eats and drinks while the going is relatively good. And although it will get worse, he is on the path!

Best
Markus

It sounds like your husband is doing very well with the difficult treatments. From what my doc told me, a side effect of pilocarpine is high blood pressure. I only took it for 2 days cuz it made me not feel well and sweat like crazy. As far as swallowing goes, Im sorry I dont remember how it kicked in. I just know it got to a point where even water burned and my throat was so bad I couldnt even talk. Hang in there, it will be over soon.

I found the first 3 weeks of Tx including my first Cisplatin was easy, much better than I feared but right after my second Cis which was the beginning of week 4 all hell broke loose and things just got worse and worse until the third week post Tx when I said I felt like I finally walked out of a nasty dark tunnel. I didn't have the Peg and all pain meds I tried made me feel worse than I did without them so I gave up trying and stopped taking them causing me to fall short on the daily water and "food" recommendations which, like a snowball rolling down down a hill, caused all sorts of nasty things to happen. Somehow I still found the end of my tunnel so I'm sure Dan and you will come thru A OK. Just don't do what I did, just do as I say do. LOL

Michelle,

At the end of week two of treatment(3 chemos and ten days of rads-BID), I was asking everyone when the bad stuff started as Bill was doing really well. At the end of week three things started crashing in and by the beginning of week four, Bill was totally on PEG feedings. It seems to happen pretty quickly. I think your body works that way...coping until it just can't anymore. Bill got fairly good relief from the liquid morphine I put in his peg...didn't need the fentanyl patch till week 5..those meds made it possible for him to swallow a little; enough to get a bottle or two of Gatorade down.

Hang in there...pretty soon you will be "celebrating" the last treatment.

Hugs, Deb

Hi Michelle-
Sound like he is doing well- for me, the pain came on gradually after about the 3rd week, it got worse over about the next two weeks and that's when I ramped up the painkillers, first Tylenol, then Vicodin, then to Fentanyl patches. At one point it started hurting so much to swallow that I was avoiding drinking and eating and that's when the doctor put me on the fentanyl which has some side effects but was worth it. I didn't have a peg tube. It's important to be honest with the doctor about how much it hurts and not try to tough it out.
Melissa

After 10 Rads I asked where we were on the pain scale and they said 2. You and your husband are doing well but my husband got really bad week 3-4.

With that said after that treatment was over the doctors wanted to try some more chemo and he has been in the hospital for one week with dangerous reaction to 5FU chemo.

Michelle- just remember every day is different and things can change quick or gradually. Just be ready and know that we are here for you.
Cindy

Hey everybody - thanks for responding. I spent today going back through old posts and reading tom & charlotte's book again. I made a list of suggestions for Dan and tonight he agreed to try the hot tea. He said the swallowing pain is here in full force - even with liquids. It took several tries to get dinner in him tonight, but he did finally eat something. Tomorrow he wants potato and ham soup - but real small / fine chunks. The mucous is horrible and last night I heard him choking all night. Tonight I gave him two of his surgery pain meds (Lortab 7.5) - he is real susceptible to meds so hopefully he will sleep tonight. We see the RO tomorrow so we'll discuss all of this with him and I'm sure get new pain meds.

Thanks for your support!

Hi Michelle-
One more suggestion, on the mucus, it helps to rinse and gargle with a mixture of baking soda, salt and water. Make up a batch of 1 liter of water, 1 spoon of baking soda and a little salt(doesn't have to be exact). Then he can rinse his mouth and gargle it several times a day, I used to get up halfway through the night and do it and it really helped. Also, I would use a big syringe to shoot it up my nose slowly until it came out my throat(you can ask a nurse to show you how to do this, it's called nasal irrigation). With the salivary gland being radiated it will affect his nasal passages too. That baking soda rinse was my best friend during radiation!
Melissa

Second the baking soda, salt, and water rinse...really helpful to my hubby especially during the night.

Deb