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Q for those who used Amifostine/Ethyol

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

To those who have used Amifostine/Ethyol, I am on my third day of it and getting very nauseous and weak.  I am taking both Zofran and Compazine to counteract the nausea but I still don't feel very good.  My question is whether my body will adapt and the side effects of Amifostine will lessen, or is this as good as it will get if I continue to take it?  It is hard to imagine dealing with this on top of the cumulative affect of radiation.  I am only in my first week of rads.

M

 

 

 

phrannie51's picture
phrannie51
Posts: 3785
Joined: Mar 2012

They gave me Ativan (Lorazipam) about 45 minutes before they gave me the Amifostine.  One time I decided not to take it, because it made me sleepy, and I wanted to be alert after rads.  I was very nausiated without it, so I never did that again.  If you aren't having to drive yourself to rad treatments, ask the Onc if you can try Ativan before the Amifostine instead of using the Zofran and Compazine.  My husband would drive me to radiation about 30 minutes after the Amifostine....where'd I dozed thru nearly every treatment....then home where I'd sleep for 2 hours.  When I awoke I felt pretty good. 

Many Dr.'s don't use Amifostine because they feel it adds extra hardship onto the patient at a time when chemo is already doing the same....however, if you can keep on putting one foot in front of the other and getting it, you'll probably bypass the horrible ropey mucous that seems to accompany radiation to the head and neck.  The only people I know who escaped it were those of us who had the Amifostine.  I can tell you this, on the last day of rads, I skipped getting the Amifostine....it did make treatment more miserable....and that day I happily skipped it.

p

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

My doctor also prescribed Lorazipam to use as a last resort, due to the drowziness issue, but I think I should use it as the primary anti-nausea med prior to Amofostine and then sleep it off afterwards, like you did. 

Thanks for your information.  You are a really valuable member of the discussion board.  On behalf of myself and others, thanks for all you do to encourage and inform all of us.

M

Greid4905
Posts: 2
Joined: Feb 2012

phrannies right on..it will get easier to handle..but atifan will keep the dread down and keep your tummy quiet..hang in there..sometimes i would have to skip the amifostine,but4 out of five days is better than nothing

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

thanks for your response.  I will keep trying.  Your message helps me to understand that it is not all or nothing.  I could skip a day once in a while if I can't tolerate it. Also, it is good to know that it may get easier.

M

Greid4905
Posts: 2
Joined: Feb 2012

phrannies right on..it will get easier to handle..but atifan will keep the dread down and keep your tummy quiet..hang in there..sometimes i would have to skip the amifostine,but4 out of five days is better than nothing

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Not so sure it will get better, maybe...

Historically those that have been on Amifostine, a lot don't make it completely through before something sidelines the remainder.

I'm not sure how yours is administered, mine was daily injections in my stomach 15 - 30 minutes or so before rads..., that's the most effective time frame, much longer and it's not as effective... I was told.

For me it would leave a quarter sized red itchy welt for a few days, so they would rotate the locations.

Eventually around day 32 out of 35, I started getting extreme fevers...102.7*.. Stopped the Amifostine, finished the last few days of rads with no further complications.

Don't take me wrong though..., I do believe they helped, especially concerning the thick ropey phlegm many get... Neither me, nor Phrannie had that going on...

I would highly endorse the Amifostine, and would do it again (hopefully not though), LOL..

Didn't have any problems with any naseau, and drove myself to and from all rads sessions...(concurrent with Carboplatin, after the nine weeks of Cisplatin, Taxotere and 5FU)...

Best

John

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

I was able to tolerate it pretty well, a few times I ran a fever (100-101) that they attributed to the Amiforstine but the weren't really sure.  Like Skiffin I had my shot in the stomach area 30 minutes or so before treatment and again like he and Phrannie I did not have the thick ropey mucous.  I had some mucous but judging from the posts here on the subject what I had was a sore toe compared to a foot amputation.  It also really protects your saliva glands.  I'm 3 months out of treatment and I'm producing some saliva, not much but some.  I'm pretty sure I have the Amifostine to thank for it.

Joe

KTeacher
Posts: 954
Joined: Jan 2011

will let you and whoever is monitoring you know.  I took Phenergan and Benedryl 1 hour before.  When I got my injection I was monitored for 20-30 minutes.  In week 5 blood pressure went whacky--no more Amifostine.  Like John, weldts on tummy.  Yes I slept when I got home from treatment but what else are you going to do?  I do believe it helped save saliva.  I had a neck dissection followed by radiation a year later, no way was my body going to do it a second time.

staceya's picture
staceya
Posts: 702
Joined: Jan 2010

I had mine IV. 500 mg was my dose, my wt then was 90#, had fevers etc, decreased it to 400 mg then able to tolerate the full course. 3 years out, almost normal salivary function. Stick with it if you can.

Stacey

rush1958's picture
rush1958
Posts: 197
Joined: Jul 2010

Add me to the list of users.

It made me sick everytime I had an injection (fever and nausea). It always felt like I got a case of the flu for about 36 hours after each injection. I only took about one fourth of the course, but I'm sure it helped. I'm three years out, but I never really ever had dry mouth and my saliva function is back to about 90% of what it was pretreatment.

 

Rush

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

For your responses.  I will try to find a better combination of anti-nausea meds and, if that doesn't work, reduce the dose.

One week of rads + Amifostine done, 5 to go.

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