| | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | Just a quick question. I did my 40 rad treatments in Aug and Sepy. Every day I would get a bag of fluid and an amifostine in the infusion room. Have many ou you had amifostine. It was alleged to protech my saliva glands.
Thanks
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Tristeve,
a lot of us had the amifostine. I was able to tolerate 28 days and then had to quit due to rashes.
I have fairly good saliva but the jury is out on weather the amifostine works. I know of two CCC's that no longer even use it with their patients.
It's a personal call and very expensive.
Kelly
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Steve,
The jury is still out on amifostine as the ones here that tried it don't seem to have fared any better than us without it but again it's not at all easy to compare recoveries to begin with as no 2 of us are identical in all respects genetically, diagnosis wise or even treatment wise. I have NEVER heard of anyone, with or without amifostine, that had radiation Tx in the oral cavity that recovered 100% saliva.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2006 Posts: 93 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2006 Posts: 93 | Husband did Amifostine with all but 2 treatments.
He does get dry mouth but never lost the ability to produce some saliva. The radiation staff recommended it and he did it. Does help to stay well hydrated. He would drink an additional huge container of water on the way to each treatment.
Margaret
caregiver to husband
right tonsil stage 3
35 IMRT TX completed 1/5/2007
PET Scan clear 3/07
biopsy 9/07 clear
1st yr PET scan 12/18/07 clear
| | | | | Joined: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | Hi Steve, I also had Amifostine as ordered by my Chemo Dr. I never questioned it! However my mouth post treatments is as dry as ever! At last appointment w/chemo dr. he said it takes 2-4 years to see any change...so I'm waiting! (& hoping!) Dianne
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
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