#68826 01-30-2008 05:54 AM | Joined: Jan 2008 Posts: 3 Member | OP 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 | | | | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | 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."
| | | | Joined: Jan 2008 Posts: 3 Member | OP Member Joined: Jan 2008 Posts: 3 | JBNich, Thanks for quick response. Did you encounter blood pressure drop? | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "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.
| | | | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | 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."
| | | | Joined: Jan 2008 Posts: 3 Member | OP 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.
| | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "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!!
| | | | 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 | [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
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "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.
| | | | 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 | 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.
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