Hi all, Well, things are getting better for us. I called the nurses and told them we wanted Zofran an Ativan. Things seem to be under control so far. Richard is drinking lots of fluids and will try eating a little later today. I assumed after all the research I did that the anti nausea drugs would automatically be given with the IV. Before his chemo began they gave him a cup of pills. I'm thinking that maybe that was the anti nausea medicine. I'm going to check with the doctor and make sure. We are going to insist that the meds be given through the IV and then he can take the pills afterward. Compazine didn't work at all and I'm really irritated that they didn't give him Zofran instead. He shouldn't of gotten so sick from this. He feels better and hopefully will be able to keep some food down. Did anyone have good luck with Compazine?

Geri

I had a bad reaction to Compazine. First it didnt work so they told me take more, use it every 3 hours. That turned into restlessness, I paced the floory unable to sit down or rest for about 48 hours. I was so exhausted, I walked around the house crying unable to sleep.

I was also given Zofran and Ativan and a few others. I remember the one pill was about $100 per pill. The nurses commented on it, they said I was awfully lucky to get that one. Cant remember which one it was or if it worked or not. I think the Zofran worked best for me.

With your husband being given large doses of chemo, it still may hit him in a few more days. Did they talk to you about "nadir" days? Thats about a week out when his blood levels will drop and it will make him feel lousy. Keep up the good work with hydration and nutrition. Pay attention to all the anti nasuea meds especially in a few more days, dont let him miss a dose.

Glad to hear he is doing better. Im sure you are relieved.

Christine, I noticed that you only had 2x cisplatin. Richard is scheduled for 3x and it would be great to only do 2x. Zofran is the expensive one and works good so far. How long do most people have to take the anti nausea drugs? Richard will keep taking them every six hours for a few more days, then try for every eight hours. He can go back to every six hours if needed.
Do people have to take these the whole time on radiation? The nurse said that depending on the individual diagnosis, Richard might not do the 3rd chemo. I'm not sure if I heard her correctly, because I was so stressed out on Mon.

Try to remember to take a pen and notepad with you to write things down. Or better yet, bring along someone to be your ears. Its so common to not hear everything they tell you. It can be very overwhelming.

I only had cisplatin twice. I was scheduled for 3 rounds but got so sick they cut it back. First dose was very strong and then the second one was cut down due to my side effects and third one cancelled.

Its really important to keep up the anti nasuea meds cuz just when you think its ok not to take them....WHAM!!!! Sick as a dog, and cant even keep the meds down. Thats just my story, not everybody gets so sick from it.

I did take anti nasuea meds the whole time of radiation and even about 2 weeks after. Treatment was pretty hard for me since I wasnt lucky enough to have a caregiver. Just remember everyone tolerates this differently. Just like oral cancer can be in different places and different stages, thats why so many different reactions. Hope tomorrow is a good day

Hi, Does anyone know from a technical stand point how long cisplatin actually stays in your body after each session? I know that there are side-effects, but how long until the drug is flushed from your system?
We tried the feeding tube for the first time today. Just started with 1/2 can to practice. Richard's RO was concerned with not eating much for a couple of days and told us to start using the tube. Luckily things have settled down and the zofran is working. Richard started eating today and if he keeps it down, we can add more calories tomorrow.

Geri,

Can't answer the Cis question..just know that each treatment has a cumulative affect...lowering blood counts for sure.

Re: the PEG. Even better than the cans of supplement...get bunches of ounces of water thru that tube as well as liquids by mouth. That is just as important as the supplement, particularly if he has been vomiting. Of course you get some water in when you flush the tube before and after the cans of supplement, but the more the merrier (within reason, of course.)

Deb

When using the Peg it is paramount to continue to exercise the swallowing muscles each and every day. It doesn't take much inactivity before they will "forget" how to swallow.

On my post-radiation PEG, I continued to take water by mouth and also to take my daily meds by mouth so as to continue using my swallower.

Hi everyone... Since Richard was so sick from the first chemo, I requested Emend for the 2nd round, plus Zofran and Ativan as needed. I was surprised when the MO ordered it. Why didn't they do it in the first place? That's a rhetorical question because it's probably a cost factor. Compazine was worthless. So he goes in for his 2nd chemo on Jan 26th and we hope, at least, that his reaction is more tolerable.

We are hanging in there and Richard is eating as much as possible to keep his weight stable for now. We had an excellent day today with our RO and nurses. The RO came right out and said that the treatment would be successful in curing his cancer, but "horrible." They are prepared to do everything possible to help with the pain that's coming. The area at the base of the tongue is very small and they expect the node to be successfully treated. So, all in all, a good day and we are very thankful.

Before the radiation appt today, we met with the peg tube nurse to check the tube. Richard has a some red area on the skin that seems due to irritation. He's still pretty active, hauling wood for the fire, walking, etc. The nurse checked it out, flushed it and said it looked fine. She recommended some over the counter topical medicine. I know he'll probably hit the wall, especially by the 4th week, but why not do what you can as long as possible. The nurse had just removed another head and neck patient's peg a month after finishing radiation and he is doing great. She was so encouraging and it was good to hear that some people do really well without too many complications.

We are going to take one day at a time with no expectations positive or negative. I know things can change rapidly and we'll need to roll with the punches. I have a big mark on my calendar for Feb 20th when the treatments are over and Richard can start to heal.

I would like to know the difference in the side effects between Zofran and Emend. Did anyone get hiccups with Emend or have any trouble with it? Zofran is constipating, but very effective. Thanks for any responses.