Hi Michael --

Barry was having heartburn and sour stomach (lots of burping) after the PEG insert and this was exacerbated once he started to get the Ethyol (and probably not helped by the chemo either tho that's just once a week) -- we spoke to the RO and nurse yesterday and they prescribed Reglan (metoclopramide) which stopped it virtually cold. He had no bad stomach or heartburn today -- you take one 15-30 minutes before eating. Worked a lot better than Prevacid. The said they use it a lot in the practise. Ask your doc or nurse about it. Also, try not to let your stomach become empty even if you just nibble some dry saltines. And keep drinking!

So far Barry's taste is OK although he had a bit of a lingering metallic taste this afternoon but it went away after a salt/soda rinse and sucking a sugar-free candy. He thinks it's because he was negligent in drinking water (sipping, really) after getting back from Baltimore. Want to get that amiphostine out of the system so you have to keep drinking...but having swigged 24+ oz. in 90 minutes prior to the injections it is hard to get enthusiasm up for more H20.

He has also found Edy's 100% fruit ice bars to be great -- they come in nice flavours, raspberry, tangerine, lime, wild berry etc.

Do you get cisplatin every day?

Best,
Gail

I know what you're saying about H2o Gail...I had 5 liters or so over the weekend and of course a ton yesterday.

Today, I didn't even want a sip, and barely managed 2 liters all day.

I wrote down the med you mentioned, thank you!

Is Barry taking anything for naseua yet?

I'm going to pop a Compazene just since I'm still feeling queezy and about a 3 on the naseua scale of 1 to 10.

I feel sort of like I'm wasting a good pill since it's not horrific yet, but I just spoke to a Dr and he said I shouldn't be suffering, and not to worry about resistance to the drugs.

I have the same metallic taste, YUK~ But, I can deal with it...I notice if I swish mouth wash it's much better....Who knows what I'll be able to do by week 7 when I have my 3rd and last round of Cisplatin (it's 2 days of chemo, at the start, middle and end of the 8 week radiation cycle).

I was refused Amiphostine, so I didn't know about the H2O with that too, and what is Ethyol?

Sounds like his team is really on top of things and that you two made a great choice.

Thanks for the updates...please keep 'em comming.

Who knows how these things will go Michael. My Onc said I would get a sore throat and have to go on liquids in around 3-4 weeks. I got it in 8 days. As for the heartburn as long as I could swallow them I took a Zantak 150 in the morning and one around 6 in the evening.

Hope you feel better and no I will not sent you a tub of buttercream icing just because you like to eat it without cake. Well maybe after you get well I will. My son could not live without a bowl of chocolate chip cookie dough at least every 3 months. LOL

God bless and give you comfort and strength,
Barb~

HANG IN THERE, Michael.[and Seth]Amy

Barb, right now I wouldn't even want to think about eating

Starting around 6:00 PM here yesterday the naseua waves began.

Since my last post around 8:00PM, I've thrown up several times.

I took one of the Compazine, and it helped after a while for about 3 or 4 hours.

I took another about 5 hours after the first.

The heartburn has been outta sight too! Between it and the vomitting I haven't had more than a few sips of water, and am worried about dehydration setting in.

Rolaids doesn't touch the heartburn much at all.

I have a liquid Zantac, which helps a little after a delay.

UUUgh! I can't imagine how I'll manage to lay on the Radiation table long enough without puking today.... :-(

It's 6:40 AM here, so I'll call the Dr's office at 9:00 AM and ask about Reglan, I think that may be the best choice next.

I guess this is just the beginning...

Hi Michael --

You may want to ask about a longer-acting anti-nausea med -- Anzemeb or similar -- Barry took one of those (a sample) before one of the amiphostine days (he doesn't get amiphostine on chemo days) and it worked for much longer. He didn't need to take any other meds that day.

We also posted to the forum elsewhere and got some anti-nausea suggestions, one was acupuncture and I see from a flyer in our patient's package that Hopkin does acupuncture for nausea from chemotherapy (as well as for pain and dry mouth) so we may try this if Barry starts getting the "amiphostine persistent queasiness". I am a great believer in acupuncture since I had it for a neck injury. See if it's available to Sloan.

The problem is -- you have to get your meds before you are sick and this is hard as it can creep up. Best to take regularly. Take another Zofran 8 hours after first, we found compazine didn't really help that much. And eat what appeals.

One tip, don't eat a favorite food within 2-3 hours of chemo because if you get really sick your brain will forvever link the two and you will be "off" the food for a long time, if not life.

Btw, amiphostine is the same thing as Ethyol -- the latter's just Medimmune's trade name for the drug.

Hang in -- Barry's made it through first week and is feeling OK so you can do it too!

Best, Gail

Hi Michael,
John's about a week ahead of you with the same dx except left tonsil. He too did not get Amiphostine. He experienced the same things you describe the first few days- had a terrible fear of vomiting at radiation but the techs calmed him and got him through it. He took a lot of Compazine but I think what really helped was extra Ativan those first few days. He couldn't think about eating and lost weight - we didn't get the Peg tube til 3 days after the chemo which I don't recommend since he was already weakened (our fault - they recommended it earlier). It really gets better - he adjusted to the Peg (the burps go away) and the chemo effects subside. We're enjoying just going to radiation (no side effects yet) before the next round. What's working for him now is 3 cans of tube feeding (jevity 1.2) through the Peg at night via a pump slowly (75 ccs/hr). He then doesn't feel as full and eats whatever he can during the day - mostly high fat fast food to up the calories. Just wanted to say hang in there - you will get relief.
Janet

Oops,
Forgot to say we switched to Reglan (you have to stop the Compazine). I'm not sure if the nausea was going to subside anyway s/t time passing but the reglan did seem to improve John's symptoms of constant fullness whenever he ate even a little. It improves the transit time of foods passing through the system. Take care,
Janet

Michael, That "fuzzy" feeling you have is probably from the compazine. It definitely had that effect on me--only it was kind of like fuzzy x 3 because the regular compazone pills did nothing for me so I was taking compazoine suppositories. My chemo nurse said it affects a lot of people that way. Switching off comapzine to Zofran made that fuzziness go away.

Do be sure to take meds before the nausea gets bad--don't let it ever get really bad because then you are limited to something like a suppository in order to keep the med down! I also second the recommendation of taking an Ativan (in my case I justdid half an Ativan since it had a strong effect on me) about an hour and 1/2 before rad. Ativan helps calm your stomach but it also helps calm you in general and amde me much less anxious about barfing during radiation--even though the Amifostine made me nauseated all through radiation no matter what else was going on.

Anyway, I'm sure you've also been told that the first two days after chemo are the worst for nausea, then it starts to get better (though slowly in my experience). I hope it gets better for you quickly!

Nelie

I'm now on Metoclopramide (Reglan), 10 MG 3x daily, instead of the Compazine.

It seems to working a little bit better, but I am still throwing up and unable to keep even water down :-(

I had my 3rd rad tx today...was sick on the table.

I have some Ativan, so I might try that tomorrow before the 10:am rad.

This is so miserable, and the worst is yet to come.