Teri's been on Kytril (2 mg) this past week and had an absolutely horrible sick day Wednesday (and has been sick following every Amaphostine shot). The med onc is changing her to Anzemet for Monday. Any thoughts on if it might be any more (or less) effective than Kytril?
We just finished rad treatment #11 today (she refused the Amaphostine today as she was afraid to go the Kytril route again). The normal regimen is Kytril, Ativan 1mg, Marinol 2.5mg & Scopalamine patch. With all this she was STILL horribly sick within 1 hr of the Amaphostine shots & stayed that way all day & most of the night. She lost 6 lbs this week. Med onc says we'll try the Anzemet & if that doesn't work he will probably recommend stopping the Amaphostine. She's really trying so hard to stay with it because of the fear of loosing all taste & saliva permanently.
Any thoughts?
Bonnie
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Caregiver to daughter (age 41, non-smoker/drinker, aerobic instructor), SCC base of tongue, Stage III (N1M0), Dx 9/27/06, partial glossectomy + modified radical ND 10/16/06, Tx 30 IMRT start 11/9/06

Bonnie,

I can't speak from personal experience with Amifostine, as it wasn't around when I was treated 17 years ago. From everything I've read here from those who have tried it, it's extremely difficult to go the whole way with it -- many people seem to find they have to stop at some point.

As one who had general field radiation (because IMRT also wasn't available then) and who had nothing protective done during treatment for salivary function, I've still been fortunate that much of it has come back over time, with help from Salagen (after the fact) and Biotene products. I can eat just about anything I want to, and my taste buds came back entirely within a few months after the end of my treatment.

Cathy

I think I was given Anzimet. And I still had problems with the amfostine. That's interesting she's getting a scopalimine patch--I also was given that my last couple of weeks in rad because I was struggling badly with nausea from amifostine but trying to continue doing amifostine every other day. And I think it did help a little! You might see if she could switch to the amifostine every other day routine--having that day to recover in between did make it easier and my rad oncologist said he thought it would still have some beneficial effect doing it that way (better than not taking it at all).

If she has to quit the amifostine entirely, she certainly won't be alone. It is really hard on most folks and many (some stats I've hard say most) people do not make it all the way through doing amifostine every day.

I did better than most I think, I had about 22 of 33 rad treatment with amifostine. And I have all my taste back, but still have some drymouth (still have a little saliva though) 1 year and 5 months after treatment ended. Others here have had much better recovery of their saliva with no amifostine at all--so it really can vary.

Nelie

Hi Bonnie,

How is her hydration as that also influences nausea. Is she taking in 2-3 quarts of liquid every day? I remember they were very exact with Jack on drinking water 90 minutes before the injections and keeping it up all day. Are they doing IV hydration with her if she can't tolerate taking in sufficient liquids? Zofran is another good anti nausea drug and Jack also was given Emend for 3 days around every chemo treatment. Is she taking the anti nausea pills every day?

Sorry to hear that she's having a hard time. Jack did complete the entire series of amifostine but a lot of other people didn't due to the nausea.

Regards JoAnne

Hi Bonnie
My hubby could not tolerate the amifostine... it made him so sick. Hopefully by now there is a better anti-nausea cocktail that can help Teri.
Take care
Marica

Hi Bonnie,
My husband is getting amifostine by IV, so the protocol is a bit different. But as mentioned above, hydration seems to be really important. They give Mike 1 to 1.5 liters of IV normal saline every single day before giving him the amifostine, and he is to drink 64 ounces of water a day. He also receives anzemet and dexamethasone before each dose. The dex has been given on a tapered schedule starting at 20 mg a day, now down to just 2, and it does seem to make a difference. In addition he gets Ativan to help with the mask and also to help with the nausea. At home he uses compazine for nausea. This has worked well for him and he has just finished week #5.

Good luck to you and your daughter.