#38404 04-06-2005 12:51 AM | Joined: Apr 2005 Posts: 27 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Apr 2005 Posts: 27 | Hi there,
I was reading a little about amifostine for protection of salivary glands. My husband is just about to undergo radiothereapy in a couple of weeks on both sides of his neck, and we are making enquiries about amisfostine's benefits/side affects. Any ino would be tremendously appreciated. We believe it would cost about $10.000 Australian Dollars (yes, we live downunder). Does this seem right? Please, any info?
Susie
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#38405 04-06-2005 02:01 AM | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Mar 2003 Posts: 251 | Susie,
Welcome to this forum. You can find lots of help/support here as you and your husband go through the treatment process. The jury seems to be still out on the effectiveness of Amifostine.
My husband had it every single day (except the last day - and then only because the nurses insisted on not giving it to him) of his 37 radiation treatments, also to both sides of his neck as well as the area of his primary, his tonsil. The Amifostine made him pretty sick to his stomach, but only for about an hour after. He was also getting chemo, so that may have added to the sickness.
He is now 2 years post treatment and his doctors tell us that they are pleased with the amount of saliva he has - even though he thinks he has terrible dry mouth. I guess that their patients that didn't take the Amifostine tend to have it even worse. So I think he is happy that he went through with it.
As to the cost, I can't quite remember, but know it was very expensive. Our insurance covered it.
Good luck to the both of you. Things will probably get rough at times - but know there is light at the end of the tunnel. My husband is doing great now.
Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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#38406 04-06-2005 03:27 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Susie,
We also tried the amifostine but , Pete was only able to withstand about 5 infusions, because of intractable nausea.
Our opinion now is , he really wishes he had been able to continue treatment as the dry mouth is such a large problem, even tho it is getting a little easier as time goes by.
I would not hesitate to try anything that will make his quality of life better.
You have a long road ahead of you Susie and it will be very tough but, there is light at the end of the tunnel for both of you.
Keep in touch
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#38407 04-06-2005 10:34 AM | Joined: Feb 2005 Posts: 663 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2005 Posts: 663 | Marcia,
Do you have directions or a map to that proverbial tunnel? I am still looking but I think I have the fake map. I can't find the X anywhere. Lol
Or maybe the bulb is burned out and someone just forgot to replace it?
Sorry just a small bit of humor there.
Cindy :-)
Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
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#38408 04-06-2005 10:53 AM | Joined: Nov 2004 Posts: 90 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Nov 2004 Posts: 90 | Cindy,
I am so HAPPY to see you haven't lost your sense of humor! Don't worry, you will see the light at the end of the tunnel, your tunnel is just a little longer than you thought....
Hang tough,
Shelley
Caregiver to husband, Ron. Throat cancer, Stage II. No Chemo or Surgery. Completed 35 Radiation Treatments in November 2004.
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#38409 04-06-2005 11:01 AM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Welcome Susie
You have found a fantastic source of support and knowledge here for you and your husband. I didn't have chemotherapy with my radiation so I can't help there. However, I am surprised at the cost of it. Doesn't medicare cover chemo? Or are you talking about the combined rad/chemo? I paid a lot in Sydney (the gap after medicare) for radiation but you can have it at a hospital where it costs nothing.
We are here for you on your journey, love and light from Helen
RHTonsil SCC Stage IV tx completed May 03
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#38410 04-06-2005 11:15 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Susie,
If he is getting IMRT he may not need it.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#38411 04-06-2005 11:47 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Cindy
Honestly.. it`s not an imaginary tunnel !
If you squint your eyes j u s t right I am SURE you will be able to see that light . See it even rhymes...lol
Hang in there and know we are right here, hanging with you.
Cheers
Marica
Succinctly said Gary ..I never thought of that !
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#38412 04-06-2005 01:14 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | fwiw, I am about to start rad with IMRT and the radiation oncologist advised that I do the Amifostine also. And I'm perfectly willing--the more saliva after, the better!
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#38413 04-06-2005 03:33 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Susie,
Welcome to the neighborhood (upover, I guess). I tried the Amofostine (Ethyol) and lasted about halfway into the treatment before I developed an allergy to it. I hear this happens around half the time. It caused nausea about 30 minutes after the shot. I don't know if it helped but anything that allegedly improves the opportunity for more saliva is worth it, in my opinion. It was about $1,500 per shot times 5 per week for about 3 weeks for me (almost $25,000 USD).
Good luck to your husband. The road is tough but well-traveled.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#38414 04-06-2005 07:26 PM | Joined: Apr 2005 Posts: 27 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Apr 2005 Posts: 27 | Thanks all you guys for replying. The more I read and learn about amifostine, I think it will be well worth us trying it for my hubby. Quality of life is of major importance and if it only spares part of one salivary gland, then that's a bonus. I just have to find out where we can obtain it now. Cheers
Susie
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#38415 04-06-2005 11:06 PM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 146 | Hi Susie,
After having a total glossectomy and right/left neck dissection, I had 37 rad treatments and had the dialy shot of amifostine. I was fortunate in that I was able to tolerate the amifostine and although not the most pleasant part of my day, I would do it all over again if I had to. I also remember the shots being very pricey but fortunately insurance covered it for me. Good luck to your husband and please know that although the journey is going to be long and tough, it is doable! Hang in there and know that we're here for you.
Hugs, Nancy
Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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#38416 04-08-2005 08:49 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Holy cow. I had no idea the shots were that pricey. I certainly *hope* my insurance covers it!
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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