Hi Amy --

I missed your post -- I agree, it is awful -- Barry's prescriptions for first two weeks totalled well over $1000 -- Zofran, Gelclair ($300!) plus Diflucane -- luckily he had state of Maryland Senior Prescription Insurance Plan which gives folks on Medicare $1200/year -- this was running out but covered a lot of it, and his country has a senior Rx card that also gives some discounts.

In our town we have an outlet for drugs from Canada (hah!) and went to check -- the 20 Zofran ordered here and delivered in the sealed bottle as they came from Glaxosmithcline would have cost $400 -- less than half-price. On the Internet, even less (about $15). Of course Canada negotiates drug costs. Ironically, a social worker at Hopkins suggested buying drugs from Canada as she feels that it is a safe as buying from mailorder here. However, we haven't done it yet.

Gail

When I'm puking my guts out I couldn't care less about the cost.

I'd mortgage the house to get relief :-)

In fact, today, I woke again with nausea, and just took a Zofran about 30 minutes ago.

It does seem to curb it, but not completely.

It's been 8 days since my last chemo, shouldn't I be done with the nausea by now????

It's so debilitating.

Last night my neck started really bothering me. It hurts like a massive sunburn. The RO said to use Aquafor, and it's basically just like petroleum jelly. Very messy, greasy and feels very weird to put on.

Also, I have a sore thorat, and very strange feeling in my throat.

I know everyone MUST be sick of hearing all this, especially the gagging I'm experienceing on the tonsil.

It keeps getting worse.

The wierd mouth gunk is a little better today, I think the saliva is reducing.

It is tough to swallow and I have some canchor sores in my mouth.

So, I've made an appt with the RO today. I'll go over my issues, but I don't expect any real news.

What do we do when it get's too bad? I can feel the tissues in my neck and throat turning to mush. Do they just drug me up so much I don't care..? Does it hurt too later? What happens if you can't swallow?? That would freak me out I think.

Michael I am so sorry you are going through this. Just try and hang in there and know there is "an end" to every beginning. Once you hit the half way mark it will go faster than you think. Once treatments are done that "sun burn" will heal up quickly.

I wish I had some answers for you but alas I do not. You are daily in my prayers dear.

Blessings,
Barb~

Michael, There really is light at the end of the tunnel. Altho, no one could tell me that during the last couple of weeks of radiation! I did not have chemo, but the radiation pretty much kicked my butt. I am praying for you and Seth, God Bless, Carol

Michael,
I must have mentioned this before but Zofran is really only effective for the first 3-5 days after a chemo Tx then you must switch to another anti-emetic.

Towards the end and after Tx, I puked so much I polished my teeth like glass from all of the acid. It's a miserable experience and I hope yours isn't as severe but I am living proof that you can survive this hell.

I never thought that I would use the compazine suppositories but I was really grateful I had them and went through several boxes much to my surprise. There are other antiemetics, as well, that are as effective as Zofran. Are you taking antacids? that may help as well.

Practically anything can cause the nausea, constipation, narcotics, chemo, radiation, mucositus, inflamed stomach lining, etc.

Be sure to keep hydrated especially after you get sick.

Michael --

I asked what the chemo folks at Hopkins use pre-treatment and they use Anzemet -- OK, even more expensive than Zofran but it lasts 24 hours (8 for Zofran), Might want to ask about it.

Barry uses one Zofran before each amiphostine shot and they are still working for that after two weeks.

The also do acupuncture at Hopkins for chemo nausea and they may also at Sloan --

Gail

thnx everyone.

zofran is holding it's own 4 now, but i have been vomitting almost non-stop for 24 hours.

its not nausea. it's from the gag thing. i can't handle this anymore. i cant keep anything dow, even water, and w/every rad tx it gets worse

again, its not from nausea per se, it's from the rad area doing something 2 my gag reflex...ive thrown up so much i am seeing doublre with white spots.

Hello Michael. I hope this finds you feeling better. How is it going with your G tube? Please be sure to monitor it well. After coming back to Moms house from a weekend away, I noticed fluids were coming out of the "hole" when I fed her. Long story short, it had pulled out and was replaced the same day I called the Dr.

She began Chemo the next day. Had Erbitux first 2 treatments and was given compazine which has worked well. This week, she had Erbitux and cisplatin on Tuesday which took all day and a simulation after that. I had made arrangements for a motel up the street from the hospital...and glad I did too!

She was given Zofran and Dexamethasone to start taking the day AFTER for 3 days and was told to still use compazine if needed. Since she is a senior on medicare/bluecross bluesheild without any prescription coverage you can imagine my shock when I went to have it filled!! Heck, I thought the liquid cipro was expensive when I filled it after the new tube, that was just chump change.

She started radiation on Wed. Mom can no longer wear her dentures (or eat) so I'm not sure what all are talking about the therabite system? However she also has a constant feeling of something in her throat. Matter of fact, she has woke up several times "spitting up", not due to vomiting but because the mucus/flim gets stuck in her throat and she can't get it up the rest of the way like most can to spit it out.
We were told today at tx that there is a machine/pump that can be used to clear it out but we need to talk to Doc. about it.

She is also using the biotene, says it takes away a film from her mouth. She is also using Nystatin for a fungus on the tongue...another pretty penny! We were given radiagel today but am not realsure if we use it now before the skin gets bad or what..well have to ask again tomorrow.

Pain management was sooo important before this all began and she don't really like what all the meds do to her (comazine included) but she is damn determined to fight with what little energy she does have, and I fell you will too!

One thing I would like to know is how in the world do I go about getting the Zofran cheeper? And should I get her the 100% aloe vera gel or boofine?

Please keep up your determination and spirit.
Mom and I have come to the conclusion that when she stumbles we'll laugh, it is either that, or we'll spend too much precious time crying!!!

Your in my prayers,
Dee

_______________________________________________
Caretaker to Mom> Unresectable stage IV SCCHN
T1-3, T4, N0, N1, N2-3

Hi Dee --

Use the Radiacare gel now -- the info sheet with the stuff we got says to start using "as soon as possible" -- the gel and the 100% aloe work about the same (the Radiacare is about 90% aloe anyway) -- the Biafine is different and should be used *after* the gel. If yu use 100% aloe, it feels really nice to be put on cold (but not icy). The Thera-bite system prevents trismus -- it might be a problem if she has mouth inflammation as there are "bite-pads" which fit your upper and lower tooth curve and which you bite on as the device slowly opens the jaw.

The best advice -- every sysmpotom -- ask (nay, demand!) attention to it and do not be afraid that they will think you are "whining" -- hey, THEY aren't going through this!!!

Well, gotta go -- the tomo machine is UP again and we have to leave for the "Hop" (or as I called it in my graduate school days, "the John" )...

Gail

Michael -- sounds as if your throat irritation is causing a gag reaction -- ask if there is something else they can do as I am not sure an anti-nausea drug will help here. You are going to get pretty debilitated with all this heaving not to mention down in the dumps. Again, ask about acupuncture as it will work for these odd nerve impulses. One of the anti-spasmotic drugs might also help. Maybe also try some GelClair?

Michael,
When was the last time these drs scoped you? Is it possible there are any stitches back there still? These drs need to get a handle on this gag problem. You have to be able to keep fluids down. The more water you can drink, the faster the bad stuff from the rads passes through your body. Read Gail's suggestions in previous post and get these drs to resolve this gag problem. If you are too sick to argue with them, get Seth to do it.

I feel so badly for you. Hope you are feeling better today.

Take care,
Eileen