Three weeks in to Rads and Chemo

Rads and chemo
Just be prepaired because it will get much worse. Use the peg to make sure that he gets enough calories. And the magic mouth wash for the sore mouth and throat. My husband had to stop working after about 3 weeks also and it has been 15 months and he has still not been able to go back to work. There are many on this site that can give you info on what to use for the dry mouth and there are things that will also thin out the mucus alittle. Maybe try some biotene mouth spray that helped my hubby a little bit.
Good luck to both of you. Believe it or not it will get better! Prayers going your way.
Jonni

longtermsurvivor said:

Jenn
I just completed radiation for the seond time two weeks ago. Not to bore you with details, you can read them if you go to my bio. My two experiences with radiation were entirely different, one from the other. The first time, in 1998, I worked every day, was on solid food, and had no problems whatsoever. I had no pain at all,,and beyond dry mouth and loss of taste, it was no big deal

This time, I didn't lose my saliva, and maintained some of my taste. But for about 6 weeksnow, my tongue is so thick I can barely talk, let alone be understood. At home, I try not to talk at all, using sign language and written notes to communicate to my wife. This is from acute swelling from radiattion, and should get better with time. How much time? I have no idea, it depends on how long it takes the swelling to go down. I have to laugh about it, because frankly I sound like an idiot.

Have him participate in this website. That will give him some control over what's going on. And it is a control issue, you know? We tend to feel like we're not in control of anythning, when we are going through this treatment. He's got choices to make. Use the PEG, or lose 50 lbs. That makes the choice easy, but it is a choice....

Second treatment is rough. But just a few years ago, it wasn't even available, so that puts things in their proper perspective. I am looking at a fairly lengthy convalescence after whatI just went through. Odds are, so is he. But that's the process, nothing to dobut tighten up the old girdle and carry on. I'd be happy to communicate with him, or with you. Post or PM me if I can be of help.

Pat

wishing you the best
Hello Jenn,

I just finished treatement for Stage 4 SCC of unknown primary. I too was on a both chemo and radiation, 35 rads and 3 chemo. I am currently hospitalized because everytime I get chemo I can't keep up on my nutrition and hydration, even with the peg tube. So if your husband is tolerating the tube feedings now keep them going, I never really got them going well, I was treated for paralytic ileuss after my peg placement, and they are currently starting slowly getting my tube feeds up to par. But good news is I am now a week out from treatment and every week that goes by is another one away from treatment.
I have had a lot of side effects and a lot issues, it has been a tough road and I, being a young man all of 35, we have had relationship issues as well. It has been very hard on me and my wife. My wife, god love her, is just what I need most the time and everything I don't want. Let me explain....... My wife is the most honest person I have ever met and during my treatment I hate this about her, I just want to cry, be held, scream at the world.... she doesn't let me, it isn't in her so therefore she doesn't allow it around her. You are so brave and smart for seeking info from this forum, everyone here is loving and caring and willing to give advice, and I have done a lot myself. If I could give any advice to you both it would be, this treatment effects everyone differently, cisplatin is a horrible chemo med, and let your husband feel the way he feels. Also a bit of advice for you is to take care of yourself as well, after all how can you take care of someone else when you neglect yourself, I know that may be hard not having anyone else around and being the only caregiver but like the old commercial says, "Calgone take me away" even a little bubble bath helps.
If I can be of any help please ask, sorry if I ramble, they keep me pretty medicated on the oncology wing, thank god I am not vomitting any more, I get late term nausea with cisplatin and it just kicks my but, this time I was too proud to complain, after 48 hours, probably 2 hours of sleep during that time, and almost constant dry heaves with intermittent vomiting, no fluid or nutrition, my wife realized I was lying and called the on call and got me admitted, like I said everything I need and nothing I want.
God bless
Clinton

Jenn
Just remember- we are all different in our specifics. Lot depends on where the rads are applied, as well as the specs on the actual C, as for how sore his throat will get.

He has a "pump" PEG? Know of others who used such, including Sweet. He is doing better than me- I started exclusive PEG intake at the end of week #1. Yes, odds are his throat will get sore, but some people like John have been able to swallow good enough thru it all, and didn't even get a PEG. It will get as it will get, Jenn. VERY IMPORTANT that he keeps the swallowing function going- even if it's just with melting ice, and doing actual swallows, or sipping ice water.

Magic Mouthwash- yes. Also was given a Nystatin (?) to combat the potential of Thrush.

Was he given chemo with the rads 6-years ago? And what exact C did he have? I ask, because of a recent NPC C Specialist forum I was able to see on YouTube, and one of the conclusions was that the best results are had with Concurrent use of Chemo and Rads. Also, know of a man who had it come back on him in a major way, ended-up going out to the U of Iowa- where he was told he should have gotten that Concurrent C&R, instead of just the rads.

Remind your hubby, Jenn- this is not the time to play Clint Eastwood- stress can be a negative factor, and the body suffering with pain that is avoidable might be making the treatment less affective, which is contrary to the goal. In other words- get whatever help he can for the pain, as well as symptoms he's experiencing.

Hope you'll keep us updated on how he's doing. Prayers are with you and him.

kcass

base tongue cancer stage 4
I had kemo and radiation 18 months ago and did not get a feeding tube. I now drink 3 (360 boost and a pind of Haagen-Dazs with each boost. Cand eat, no saliva and lots of different feelings in my mouth all the time but I feel good and have not goten sick in 18 months.
Robert