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Author |
Topic: Amifostine? |
Joanna
"Above & Beyond" Member (200+ posts)
Member # 41
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Following the extraction of some teeth, I shall begin radiation
for a T2 tumor in the
retromolar trigone area. I was initially very pleased to learn that
the ENT had
prescribed Amifostine, a radioprotectant, that reportedly spares
the parotid glands
from much damage. A conversation with the radiology oncologist,
however, revealed
that none of his patients has been able to tolerate the drug. Being
more than a
little competitive, I look on this as a direct challenge to be the
first one,
but wonder if anyone here has any experience with this drug. I will
post my
reaction to it, in the hope of helping some later patient.
Thanks for any information that anyone is able to provide.
Posts:
161 | From: Pacific Northwest | Registered: Mar
2002 | |
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Kristin
Member
Member # 51
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Joanna,
My mom finished 8 weeks of radaition for the same cancer you have.
She had amifostine. We did not know that the drug was so powerful
and that no one can seem to tolerate this treatment drug. We thought
the side effects in her mouth were the result of the radiation,
but I guess a large portion of it was the amifostine. I can't say
to do or not to do. But from what I have heard it protects your
salivary glands which are so vital for eating (lubricates food to
get it down your throat!), for speech and for fighting bacteria
that live in your mouth.
They gave my mom lots of drugs to help with the side effects- anti-nausea
pill each day at a $100 a pop, fluid bolus. The hardest part was
the pain of the changes she experienced in her mouth. She still
10 weeks lated is struggling wit this. But maybe it would have been
worse had she not had the drug.
Good luck to you and let me know how you do. Keep strong.
[ March 25, 2002, 09:55 AM: Message edited by: Brian Hill
]
Posts:
11 | From: Cape Cod | Registered: Mar 2002
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Mark
Giles
Member
Member # 5
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Joanna,
I'm not a doctor, and certainly no expert in this area, but I did
visit a radiation oncologist a few weeks ago, who told me that Ethyol
(brand name of amifostine) would definitely reduce xerostomia (dry
mouth). According to her, xerostomia is the most debilitating effect
of radiation, and the one her patients seem to have the most difficulty
with. Not only does amifostine make this condition more manageable
during treatment, but it can reduce recovery time, improving salivary
function more quickly. She also indicated that Ethyol can now be
administered subcutaneously (under the skin).
Perhaps it is the route of administration that is key to your question.
Ethyol has always been given intravenously, and the side effects
can be nasty: severe nausea and vomiting, and hypotension (low blood
pressure). Because of the GI effects, anti-emetic drugs have to
be given before the Ethyol (see Kristin's response), which, in turn,
is given prior to the radiation, all of which makes the whole process
long and tedious, not to mention uncomfortable. According to my
reading on the subject, however, subcutaneous administration can
greatly reduce the side effects of amifostine, without sacrificing
its radioprotective properties.
Another possible side benefit of amifostine is some relief from
mucositis, or sore mouth. Although the FDA has only approved it
for xerostomia, some clinical trials have reported a lower incidence
of mucositis as well.
Once again, please confirm all of the above with your radiation
oncologist -- only he or she can advise you properly. But it might
be worth asking about the sub-q injection. If you can reap the benefits
with less discomfort, why not go for it?
Good luck, and keep us informed of your progress.
Mark
--------------------
Mark Giles
Stage II Tongue Cancer Survivor
Posts:
12 | From: Southeast Michigan | Registered: Mar
2002 |
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Joanna
"Above & Beyond"
Member (200+ posts)
Member # 41
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Thank you very much, Kristin and Mark! Yes, the application will
be by injection and your response, Mark, gives me hope. As I am
a bit younger and in otherwise great condition, I hope this will
also help me get through it better than some of his other patients.
I am also determined that when all is said and done, I will be able
to spit!
About mouth sores, because the tumor is on one side, I asked if
the entire mouth will be affected. Was told yes, because both sides
of neck will be irradiated as a precaution.
My feeling is that I can get though just about anything if there
is a defined end point. For the benefit of others, I will post about
the drug as I experience it.
Thanks again, you two. I am in the information gathering mode right
now and everything helps.
Posts:
161 | From: Pacific Northwest | Registered: Mar
2002 |
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Julie
Contributing
Member (25+ posts)
Member # 42
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My husband had radiation for tonsil cancer and he had amifostine
prior to each treatment. It was given IV. He tolerated it pretty
well. At one point had to switch from nausea pill compazine to zofran
(expensive stuff), but made it through all the treatment with the
amifostine. He is glad he did it now, almost two years past radiation,
he still has some dry mouth, but not near as bad as right after.
He was only 37 when he went through radiation and very healthy,
except for the cancer. Good luck, I hope you can take the amifostine.
Julie
Posts:
43 | From: Mississippi | Registered: Mar 2002
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Joanna
"Above & Beyond"
Member (200+ posts)
Member # 41
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Thanks for the information, Julie. From the responses I have received
here, I am sure I can do it. To learn that others have tolerated
it gives me confidence.
Thanks again for taking the time to post.
Joanna
Posts:
161 | From: Pacific Northwest | Registered: Mar
2002 |
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Kristin
Member
Member # 51
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Joanna,
I am glad to hear others survived amifostine as did my mom. Your
mouth will be feeling the effects of the drug and the radiation,
but keep a postive attitude and that will help. My mom experienced
the side effects of the treatments fairly soon into her treatment,
about 1-2 weeks which was a surprise to the docs. So she has been
pretty much on a liquid diet; cream soups, puddings, egg nog, protein
shakes, water. So get out the blender and get creative.
I look forward to hearing how it all goes for you, as I feel like
what my mom went through was tough. So I hope to be able to support
you in any way I can, even if it is only through reading about it!
[ March 27, 2002, 09:36 PM: Message edited by: Brian Hill
]
Posts:
11 | From: Cape Cod | Registered: Mar 2002
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Joanna
"Above & Beyond"
Member (200+ posts)
Member # 41
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Thanks for the support, Kristin. I have learned so much here. Have
stocked up on protein powder, and finally feel that I am justified
for the purchase a year ago of an expensive VitaMix. I am a small
appliance junkie and feel better knowing that at least this one
will be used. I am just spinning my wheels now, as the extractions
will not be done until next week, and then it will be at least 10-14
days until treatments begin. I am anxious to get this started! In
the meantime, I am being very wicked and eating all favorite foods
in quantity in case the lack of teeth and/or sense of taste put
them out of reach in the future. Cannot remember ever having such
a good time eating (grin). I am also binging on citrus fruits, a
favorite, as I doubt my mouth will accommodate them very far into
radiation.
I do hope to read soon that your mother is doing better. Sounds
like about time she turns a corner.
[ March 28, 2002, 04:27 PM: Message edited by: Joanna ]
Posts:
161 | From: Pacific Northwest | Registered: Mar
2002 |
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Skip
Member
Member # 67
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Joanna, I completed the radiation treatments, (37) on Dec.12th 2001.
In the second week I was given two injections in the skin of the
abdominal area of Amifostine for two days a week. I only had to
miss one day due to low blood pressure. I was given a soft tablet
that would dissolve on my tongue one half hour before the injection,
this was to minimize the side effects of Amifostine. The worst I
experienced, was a little light headedness imediately following
the very first injections. Although I do experience some dry mouth,
the doctors tell me that it is in no way as bad as it could have
been, and they are well pleased with the results of my recieving
the Amifostine.
All I can say is, hang in there. You will get through it, the healing
process is a slow one so be patient, and good luck!!
[ March 29, 2002, 08:39 AM: Message edited by: Brian Hill
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Posts:
1 | From: California | Registered: Mar 2002
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Joanna
"Above & Beyond" Member (200+ posts)
Member # 41
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Thank you, Skip. First, I am glad to hear you are doing so well.
Secondly, the information you have provided is very much appreciated.
The more I learn, the more "doable" this becomes. You and others
on this forum provide facts not available elsewhere. I will attempt
to return the favor by posting my experience with this drug.
Thanks again!
[ March 29, 2002, 08:40 AM: Message edited by: Brian Hill
]
Posts:
161 | From: Pacific Northwest | Registered: Mar
2002 |
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Jayne
Member
Member # 47
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My father age 69 had part of his tongue removed & had a neck dissection
to remove lymph nodes. They also found cancer there. He is undergoing
radiation treatment now. He has had ten treatments with 4 (or 5)
more weeks to go. They told him they would give him a drug to prevent
the destruction of his salivary glands. I assume it is Amifostine.
However, they are telling him they are not sure they want to give
it to him. He says they seem to be unsure of its effectiveness.
Is this a very new drug? He is being treated at a Veterans Administration
Hospital. Thank you.
Posts:
3 | From: Amherst, N.H. | Registered: Mar 2002
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Joanna
"Above & Beyond" Member (200+ posts)
Member # 41
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Jayne, this has been around for a while. Search for it on the Internet
and you will be able to pull up the clinical trial documents. As
you can see from the responses to my original question, it does
work. One SNAFU after another has postponed the beginning of my
treatments, but I am definitely going to have it. Spitting is high
on my list of necessary skills (grin). It is also known as Ethyol,
so you can search for that too. Good luck!
Posts:
161 | From: Pacific Northwest | Registered: Mar
2002 |
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Jayne
Member
Member # 47
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Thank you. I will research the drug today for him.
Posts:
3 | From: Amherst, N.H. | Registered: Mar 2002
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