Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#68826 01-30-2008 05:54 AM
Joined: Jan 2008
Posts: 3
bb1217 Offline OP
Member
OP Offline
Member

Joined: Jan 2008
Posts: 3
I would like to know patient reaction to Ethyol during radiation treatment?

My husband has oral cancer and I am getting mixed opinion and I am confused. Please help.

Thanks in advance

bb1217 #68831 01-30-2008 06:14 AM
Joined: Jan 2008
Posts: 82
Senior Member (75+ posts)
Offline
Senior Member (75+ posts)

Joined: Jan 2008
Posts: 82
bb1217,
I had the daily injections prior to radiation on each visit. I was told the radiation had to begin within thirty minutes to an hour after the injection. The nurses injected me in the backside of my biceps, alternating daily, until the final week when they had to go to my literal backside. At $1600 a pop, who knows? I had six weeks worth. I understand it's to help protect that salivary glands, that somehow it gathers around the 'good' tissue, thereby protecting that tissue from the IMRT side splash. I was also told the Ethiol was 'burning me up' during radiation, too... BUT, if it's any indication I am now able to eat soups and chowders and such, even a small chili-dog last nite just three months plus 11 days out of radiation. Some people here at OCF say that is sort of phenomenal (?). Of course, having never done this, I wouldn't know. If my salivary function is an indication of the protective effects of Ethiol, then I would say it worked for me even if it did 'burn me up.' Granted, my salivary function is not that wonderful, my mouth really gets dry at night, and I have to keep the biotene gel, and the Oasis spray handy... I still have xerostomia. In short, I don't know, but it appears to have worked for me. God bless you both... I hope this has been somewhat of a help.


John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
JBNich #68832 01-30-2008 06:18 AM
Joined: Jan 2008
Posts: 3
bb1217 Offline OP
Member
OP Offline
Member

Joined: Jan 2008
Posts: 3
JBNich,
Thanks for quick response. Did you encounter blood pressure drop?

bb1217 #68835 01-30-2008 06:38 AM
Joined: May 2006
Posts: 720
Likes: 1
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2006
Posts: 720
Likes: 1
bb1217 --

Use the Search box in the upper right corner of each forum page to search for Ethyol (the brand name) or amifostine (the generic name). A number of people here have tried it, some with success and some not.

All the best --

Leslie


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
bb1217 #68836 01-30-2008 06:40 AM
Joined: Jan 2008
Posts: 82
Senior Member (75+ posts)
Offline
Senior Member (75+ posts)

Joined: Jan 2008
Posts: 82
Well,
I was taking Atenolol 25 mg/day... a relatively small dose, and as a result of everything I went through, having lost so much weight... I'm not taking any meds... AT ALL! I had antidepressants, pain meds, the whole nine yards, and now... nothing. Yes, I did experience a drop in BP, but the nurses and doc were right there every minute of every day I was under their care.


John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
bb1217 #68838 01-30-2008 06:53 AM
Joined: Jan 2008
Posts: 3
bb1217 Offline OP
Member
OP Offline
Member

Joined: Jan 2008
Posts: 3
I will greatly appreciate if anyone had a good or bad reaction to drug recommended prior to radiation theray called 'Ethyol'. My husband already has cardiac and kidney problem and I am not sure if the use of'Ehyol' can complicate situation more.

Thanks in advance.

Last edited by bb1217; 01-30-2008 06:55 AM.
JBNich #68840 01-30-2008 07:29 AM
Joined: Feb 2004
Posts: 598
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Feb 2004
Posts: 598
I received it daily during Radiation via IV. It is a very short lived chemical in the system -- which is why it has to be given within 30 minutes of radiation. After about 4 weeks, I noticed that I would get nauseous about 1 hour after the infusion. I could almost set my watch by it -- by the time I had it, got down to radiation, had the rad and started walking back to the car, a bout of nausea would hit at just about the same location in my walk every day. Nothing serious, no vomiting, just a nauseous feeling that passed after about 20 minutes.

Today I can eat virtually anything, but still have to use lots of water, Biotene, etc. If I talk a lot, exercise, etc., dry mouth gets severe. But I surmise it would have been much worse had I not had the Amifostine (aka Ethyol).


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
bb1217 #68848 01-30-2008 09:07 AM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
[quote=bb1217]I would like to know patient reaction to Ethyol during radiation treatment?

My husband has oral cancer and I am getting mixed opinion and I am confused. Please help.

Thanks in advance [/quote]

I had Ethyol but I only lasted about halfway through the treatment and developed an allergic reaction to it. I have saliva although it is noted as "thick and ropey". The reaction I had started shortly into treatment and got progressively worse and eventually cause a severe reaction within minutes of the injection so it was decided by the medical team to stop. Even if I had to do it again, I would consider the Ethyol because of the documented benefits of salivary gland function.

My blood pressure has been about 112/76 for many years but when it went lower I don't know if it was from dehydration or the Ethyol or the chemo. My creatinine went to 1.2 as soon as I had the first Cisplatin dose and never went down.

I hope this helps.

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
Uptown #68858 01-30-2008 10:01 AM
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
I did not have ethyol, although it was discussed at great length with the RO. She figured that given the side effects that it can have (has) it was not worth it in my case. Note!! this does depend on what exactly gets radiated. The radiation field may be quite different from patient to patient. Especially with IMRT the parotid glands (or one of them) are often not destroyed. Also note that there are other salivary glands (submandibular and sublingual)... which are more likely to be in the radiation field (depending on cancer location)

That said, I can eat pizza (stromboli actually), soft bread etc without having to drink water, although I usually do. I have issues with crumbly food and taste that is not quite where it should be.

Markus






Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Markus #68870 01-30-2008 01:38 PM
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Like Markus, I was told by my docs that it wasn't worth it for me to get it. I was told that my saliva should be just fine within 90 days of Tx. Well they missed it by about 13 months but now my taste and saliva are really much much better and if they stop improving today, I'll be OK with where they are.

One thing that you will hear all the time and it's true...we all have similar but different reactions to the Tx because of all the variables that come into play. What works for some may not work for others and vice versa.


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.
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
amndcllns01, Jina, VintageMel, rahul320, Sean916
13,104 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,927
Members13,104
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5