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Re: Amifostine [Re: Markus] #94280
04-25-2009 11:07 AM
04-25-2009 11:07 AM
Joined: Jan 2009
Posts: 253
Virginia, USA
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SandySt. Offline OP
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SandySt.  Offline OP
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Joined: Jan 2009
Posts: 253
Virginia, USA
Markus:
Thank you for your reply. Of both optins, I thought Tempol would be available since the study was 2005. The mounse study is the info I also got off the internet.

Other interesting info I learned (as you can see in my other post) is investigation into electronic stimulation similar to acupuncture for salivary glands.

As some of you have guessed, I'm a research hog. Some info pans out and some doesn't. I enjoy doing it, and it relieves at lot of stress.

Last edited by SandySt.; 04-25-2009 11:08 AM.

Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
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Re: Amifostine [Re: SandySt.] #94282
04-25-2009 11:42 AM
04-25-2009 11:42 AM
Joined: May 2007
Posts: 666
Atlanta
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Markus Offline
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Markus  Offline
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Joined: May 2007
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Atlanta
I am glad you specified that this is a source of relief. Especially if you delve a bit deeper....... imagine how they measured the saliva production in mice??!
Often however, people tend to grasp at straws and drive themselves nuts with all the crap that you find on the net or worse delay standard treatment.
Clearly, loss of normal saliva production and types is a problem. .. but as Brian has pointed out, you have to be around to be able to complain. And that would be a good thing!
Beside chemo protection and stents during radiation there is not much you can do during treatment and this may not be all that relevant anymore give the targeted radiation delivery these days (except perhaps for special cases).

Keep researching!!!

M







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.
Re: Amifostine [Re: Markus] #94286
04-25-2009 12:25 PM
04-25-2009 12:25 PM
Joined: Jan 2009
Posts: 253
Virginia, USA
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SandySt. Offline OP
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SandySt.  Offline OP
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Joined: Jan 2009
Posts: 253
Virginia, USA
Thanks Markus.
Personally, I think I'll be okay. The right side salivary gland under my chin should be okay as it will receive a lot less radiaton.

Thanks for not critizing me for my research. As most peple like to feel as if they're are in control of a situation, doing reseach helps me to feel that I'm being proactive.

Thanks again
Sandy S.



Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter

Re: Amifostine [Re: SandySt.] #94287
04-25-2009 12:39 PM
04-25-2009 12:39 PM
Joined: May 2002
Posts: 2,152
Trenton, New Jersey
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Eileen Offline
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Eileen  Offline
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Joined: May 2002
Posts: 2,152
Trenton, New Jersey
Sandy,
I'm surprised no one mentioned this. I took Salagen during radiation and for several years afterwards and do have some saliva, albiet not real watery. I had the same XRT radiation in 1997 that Brian had and since I had unknown primary, they fried me from my ears to my armpits. The only side effect I had from the Salagen was perspiring heavily for about 5 minutes, 30 minutes after I took it. It was well worth it to not have the dry mouth that Brian has. It also has another name that fails me at the moment.

I also have an electonic device that I used at some point after the radiation was over. It too enhanced my saliva production for a while. Can't think of the name either at the moment(I'm packing for a trip). They used it for Sorgens (sp) patients. I have no clue if they still even make it. Brian had never heard of it. I doubt I will have time before I leave, but I'll try to get you the name of it. Look into the Salagen.

Take care,


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Re: Amifostine [Re: Eileen] #94294
04-25-2009 02:09 PM
04-25-2009 02:09 PM
Joined: Mar 2003
Posts: 1,376
Minnesota, land of 10,000 taxe...
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Mark Offline
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Mark  Offline
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Joined: Mar 2003
Posts: 1,376
Minnesota, land of 10,000 taxe...
I was told that Amifostine makes scheduling a problem before rad. treatments. It has to be given in a narrow time frame before. In a typical day the waiting line would not permit reliable Amifostine delivery.


Mark, 17 Years survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
Re: Amifostine [Re: Mark] #94295
04-25-2009 02:25 PM
04-25-2009 02:25 PM
Joined: May 2002
Posts: 2,152
Trenton, New Jersey
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Eileen Offline
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Eileen  Offline
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Joined: May 2002
Posts: 2,152
Trenton, New Jersey
OK. I'm home. I'm packed or mostly packed. Flying used to be fun. Now it is a challenge to figure out where to put what and get it all in one suitcase. If they keep it up, the luggage will cost more than the ticket.

Anyway, the device is called Salitron and was/is made by Biotronics. My RO got it for me. It was experimental on H&N patients in 1997. You can't use this until your mouth is healed. It delivers a small electric charge to the roof of the mouth for several minutes, like 6 if I remember. I think one used it daily 3 times a day. I have no literature on it that I can find. I stopped using it when it no longer had any noticeable effect which was after a few weeks.

Check out the Salagen. That is probably your best bet for the least sdie effects for the moment. I do not need a bottle of water at all unless I'm taking a lot.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Re: Amifostine [Re: Eileen] #94320
04-25-2009 08:52 PM
04-25-2009 08:52 PM
Joined: Jan 2009
Posts: 253
Virginia, USA
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SandySt. Offline OP
Gold Member (200+ posts)
SandySt.  Offline OP
Gold Member (200+ posts)
S

Joined: Jan 2009
Posts: 253
Virginia, USA
Thank you to everyone who replied. It was a great discussion.
Sandy S.


Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter

Re: Amifostine [Re: SandySt.] #113768
03-08-2010 07:35 PM
03-08-2010 07:35 PM
Joined: Dec 2009
Posts: 17
Bethasda, Maryland
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LindaNIH Offline
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Joined: Dec 2009
Posts: 17
Bethasda, Maryland
Sandy,
Information on the current clinical trial using Aquaporin gene therapy for radiation induced xerostomia can be found at www.drymouthstudy.com . It's a beginning Phase 1 trial but is showing favorable results.
Linda


Hx of stage IV non-oral cancer tx with radiation, chemo & surgery in 2005. Currently a research nurse with National Institutes of Health working on a clinical trial using gene therapy for radiation-induced xerostomia. mccullaghl@nidcr.nih.gov
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