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Protecting the Salivary Glands while on Radiation

coco2003
Posts: 9
Joined: Oct 2007

I was given Amiphostine 30 minutes prior to each of my 38 radiation treatments I received and indeed it did protected my salivary glands, right more than left since I received most of my radiation in the left side. I have been on remission for 14 months and I don't drink so much water as I did after treatment. I am able to eat steaks, pasta, chicken, rice and crackers. Amiphostine was recommended by both of my oncologists but they really did not guaranteed anything and I decided to go with it. After reading many messages on this site and others I consider myself a fortunate survivor. Not even a PEG tube was needed. Had a stage 4 left tonsill CA which did not required surgery. I recommend the use of Amiphostine for those who are about to start radiation. It has some sideffects but at the end it was worthy. Discuss this option with your Dr's.

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

You are one of the lucky ones. Amiphostine has a fairly high rate of reactions in people. I was on it for about 2/3 of my radiation before I had a reaction to it. Plus two shots that size a day was no fun at all, but I agree, it does do a world of good for not only that but it helps the rest of your organs as well.
My cancer (scc) was in my left tonsil as well but I had to have it removed along with a small part of my tounge a fairly large area around the tonsil (radical tonsilectomy). But thank God, I too am well past treatment and doing fine. (16 months for me).

BILL

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

what kind of bad reaction did you have. Is it worth trying till you have the bad reaction. Can the bad reaction be fatal or detrimental in some other way

coco2003
Posts: 9
Joined: Oct 2007

The worst side effect is that it produces hypotension and you need to be monitored while you are getting the medication. Other than that, I had some nausea. I still recommend it. These side effects are just temporary, losing your salivary glands is permanent.

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

I would HIGHLY reccomend it! The only reaction I had to it was a nasty skin rash that cleared up within days of being taken off of it. You may check with your Hospital to see if they may be doing a Amiphostine study like Vanderbilt was and at that point the shots cost you nothing.

All my best,
BILL

Juliaann
Posts: 4
Joined: May 2011

Hi there:
Didn't I see somewhere that you had to have all of your metal teeth fillings on your teeth removed before you had radiation? I just found this site, and lost the post that I think it was you that mentioned it. I have a question, and if it was you, will you please email me at rockyy@comcast.net. Thank you.
Julia

Juliaann
Posts: 4
Joined: May 2011

Hi there:
Didn't I see somewhere that you had to have all of your metal teeth fillings on your teeth removed before you had radiation? I just found this site, and lost the post that I think it was you that mentioned it. I have a question, and if it was you, will you please email me at rockyy@comcast.net. Thank you.
Julia

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I had the two shots as well. As with you, my doctors could not guarantee anything; as with you, I suffered no noticeable negative reaction.

I am not sure how much this had to do with it, but as with you, I have salivary action as well and therefore also recommend it.

It is expensive, however, (I think the shots were about $400 each?) so make sure your insurance covers it, and make sure your docs okay it ahead of time.

Take care,

Joe

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

I had one week of the Amiphostine shots before I started having severe reactions. Constant N/V. My MO said the side effects weren't worth the trouble and that, since there was no guarantee, it would be ok to stop taking the shots. I was also told that my left parotid was getting most of the radiation and wouldn't survive even if I continued to take the shots. So, I am now 12 mos out of treatments and have some function in my right salivary glands, but none in my left. I am able to eat a lot more things now and feel like I am still improving.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I was given the same advice, MLC. IF the stuff caused ANY sort of negative reaction, we would just drop it. It was really as if they were not sure whether it worked or not. We went with it on the premise that it MIGHT work AND I was given an anti-nausea med, I forget which, prior to getting the shots each day as well.

I was also told that it was likely we would only save one side if we did any good at all with it. But I have function on both sides. I just can't say for sure if it was the amophostine.

Congrats re the progress, by the way!

Take care.

sassyque
Posts: 44
Joined: Jun 2008

Glad you are doing well and I am learning alot.I have a lot of questions to ask my dr when I see him.I was not offered this drug and my saliva glands are shot.My cancer was 5 years ago.Is this drug new?

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

It is still in the testing stages in some areas. I am sure it was not available five years ago.

BILL

coco2003
Posts: 9
Joined: Oct 2007

Taken from: Oncology Encyclopedia: Amifostine

Definition

Amifostine, also known as the brand name Ethyol and as ethiofos or WR2721, is a medicine that helps protect certain tissues of the body from damage caused by chemotherapy or radiation therapy.

Purpose

Amifostine is a protectant agent that is used in combination with the chemotherapy drug cisplatin or in combination with radiation therapy. Amifostine is approved by the Food and Drug Administration (FDA) to prevent kidney damage caused by repeat doses of the chemotherapy agent cisplatin in patients who have a diagnosis of ovarian cancer or non-small cell lung cancer. It is also FDA approved for patients with head and neck cancer who are receiving radiation therapy after surgery. In this group of patients, amifostine helps decrease radiation damage to the salivary glands, which can cause dry mouth.

Description

Amifostine has been on the market since the mid-1990s. A clear colorless solution, it is administered into a vein before chemotherapy and has been shown to decrease kidney damage by greater than 50% in advanced ovarian cancer patients who have received multiple cycles of cisplatin. It is also used before radiation therapy to prevent damage to the salivary gland known as the parotid gland.

When cisplatin is given to patients, it becomes broken down into toxic substances that destroy cancer cells and normal cells. When amifostine is administered into the body, it is broken down by an enzyme that occurs in large quantities in normal cells but not in cancerous cells. It then is converted into a substance called free thiol, which combines with the poisonous cisplatin byproducts in the normal cells and makes them nontoxic.

In patients who receive radiation to the mouth area, including the salivary glands, the radiation causes the release of substances called free oxygen species, which damage cells of the mouth. An enzyme in cells of the mouth breaks down amifostine into a substance called free thiol. The free thiol blocks the free oxygen substances from damaging the salivary cells and decreases the amount of dry mouth patients suffer from when they receive radiation to the head and neck area.

Recommended Dosage

Before dosing amifostine in chemotherapy or radiation therapy patients, intravenous fluids need to be given to keep the body well flushed with fluid and to maintain a normal blood pressure. All patients will receive amifostine lying down, sometimes with the head of the body lower than the feet. Patients should also receive medication to help prevent the nausea and vomiting that occurs due to amifostine.

Amifostine dosages can be determined using a mathematical calculation that measures a person's body surface area (BSA). This number is dependent upon a patient's height and weight. The larger the person, the greater the body surface area. Body surface area is measured in units known as square meter (m2). To determine the actual dose a patient is to receive, the body surface area is calculated and then multiplied by the drug dosage in milligrams per squared meter (mg/m2).

The recommended dosage of amifostine for protection of the kidney is 910mg/m2 administered as a 15-minute infusion into a vein. This is to begin 30 minutes before chemotherapy administration. If a patient has difficulty with this dose, the dosage can be lowered to 740 mg/m2.

The recommended dosage of amifostine for radiation therapy patients is 200 mg/m2 administered once a day into a vein over a three-minute time period 15 to 30 minutes before the patient receives radiation treatment.

Precautions

Amifostine can cause a decrease in blood pressure when it is administered. During the 24 hours before receiving amifostine, patients need to drink a lot of liquids. When amifostine is being administered, medical personnel will be monitoring the patient's blood pressure. If the blood pressure drops significantly, the infusion of amifostine will be stopped until blood pressure returns to normal. The doctor will decide if the patient should receive any additional amifostine. Patients who have low blood pressure to begin with or patients who are not drinking a lot of fluids—referred to as being dehydrated—should not receive amifostine.

Patients with a known previous allergic reaction to aminothiol drugs should not receive amifostine.

Patients who may be pregnant, thinking of becoming pregnant, or who have a history of heart problems or strokes should tell their doctor before receiving amifostine.

Side Effects

The most common side effect from receiving amifostine is a lowering of blood pressure, which occurs in approximately 62% of patients treated at a dose of 910mg/m2. This lowering of blood pressure occurs within the first 15 minutes of administering the drug. Blood pressure is monitored throughout the infusion of amifostine. If the blood pressure drops to certain level then the drug is stopped and restarted only when blood pressure returns to normal.

Nausea and vomiting are common side effects. They occur rapidly and can be severe. Usually, patients are given medicines before receiving amifostine that can help prevent or decrease these side effects. Other side effects include sneezing, hiccups, a warm feeling and redness of the face, sleepiness and dizziness, metallic taste, fever, rash, and chills.

Rare side effects of amifostine are: a lowering of calcium levels in the blood, seizures, allergic reactions which include symptoms of fever, shaking chills, itching, low blood pressure, shortness of breath, and rashes. There have been rare reports of throat swelling, chest tightness, and heart stopping.

All side effects a patient experiences should be reported to their doctor.

Interactions

Amifostine causes a decrease in blood pressure and should be used with caution in patients who take blood pressure lowering medicines or other medications that may lower blood pressure. If patients are taking blood pressure medications, they may be asked to stop taking these medications for 24 hours before receiving amifostine.

Patients should tell their doctors if they have a known allergic reaction to amifostine or any other medications or substances, such as foods and preservatives. Before taking any new medications, including nonprescription medications, vitamins, and herbal medications, patients should notify their doctors.

coco2003
Posts: 9
Joined: Oct 2007

Sorry I missed the introduction before pasting the information about Amiphostine. Amiphostine has been around since the cold war and its purpose was to protect the people from radiation in case of a nuclear attack (that is what my radiaton oncologist told me and I have verified it). After some years later it was found that it would only protect the salivary glands. Since then, as stated above, it has been used only for cancer patients specially head and neck.

In some other articles related to amiphostine, it has been proven that it is indicated for xerostomia or dry mouth, which you can research in the internet or ask your doctors. You will also find that there is no guarantee of success but as you can see in this group, everyone has something positive to say and all of us highly recommend it.

I had my taste back in about 2 months but I don't know if that has anything to do with amiphostine.

I am happy that you are in remission and hope that you can get your taste back soon.

TereB
Posts: 288
Joined: May 2003

Thanks Coco, this is good information to have. I've had radiation twice in the head/neck area and I was never told about Amiphostine and that is why I thought it was a new medicine.

The information comes a little late for me. One of my salivary glands was destroyed by radiation some years back. I am sure all the information you have posted will be useful to many people.

TereB

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Really interesting information. I do remember that my blood pressure was monitored daily prior to taking the two shots, and that, as mentioned earlier, I got the anti-nausea pills.

I must take exception with one item: I did not take my shots lying down but sitting in a chair. Perhaps they were comfortable with my blood pressure?

And, by the way, it was not administered into veins, as the article implies (at least to me), but directly into my stomach for some time, before they switched to my shoulders and then to my butt. At no time were they searching for a vein.

Of particular interest to me, I was taking cisplatin simultaneously with the radiation, and we never discussed any benefits of this medication with respect to the chemotherapy, so that seems somehow serendipitous now. Very cool!

The cisplatin DID make me sick as a dog, so I am wondering how much worse it might have been without the amifostine, assuming the accuracy of the article.

Thank you for this, coco!

Take care,

Joe

coco2003
Posts: 9
Joined: Oct 2007

Joe,

I had Amiphostine administered intravenously through a port a cath which I really recommend it to all who are receiving chemotherapy and it was administered while I was lying down.

Different to other patients, I had chemo first and when the treatment was over, then I began radiataion therapy, but not both at the same time.

I also discussed with a nutrionist my daily requirements of proteins and calories needs and together we elaborated a nutrional plan to avoid the abdominal feeding tube.

As you stated, I hope that this information can be helpful to all who are starting radiation therapy or are going through it.

Sam999
Posts: 305
Joined: Mar 2012

My heart sinks when I read about this. I had asked my doc about this and she said they dont give it to anyone. I had no idea how this radiation is going to affect rest of my life when i started. I wish i had tried a different radiologist for a second opinion.

Sam

caregiver99
Posts: 27
Joined: Aug 2011

The docs never mentioned this drug to my girlfriend, fortunately her salvia is coming back.

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

My Onc doesn't give or recomend it, I to would of tried it to save the saliva glands.
I'm 6weeks out and my mouth is dryer than ever, it seems like someone is shovelling
sand in it. Hopefully it will get better but right now its a pain in the ass.
Stage 2 tonsil cancer( no node involvement), 33 rad treatments only.

God bless
Tonsil Dad,

Dan.

phrannie51's picture
phrannie51
Posts: 3730
Joined: Mar 2012

and we shall see how my saliva does. It sounds to me like some saliva comes back to most people given time, and some people get nearly all of it back (given time)...Sam, part of the reason some give it, and others don't is the "iffy" part...and part of the reason is because of the side effects...blood pressure and nausea...I chose my Oncologist specifically because he did offer it.

It's not easy-peasey, tho. I dread getting it every day...I call it my "daily sick shot"...I have to go to chemo every day by noon so they can hydrate me, and give the anti-nausea meds....Ativan and some other one...then get the Amifostine at 2:15 for my rads at 2:40...I come home and sleep till 6:30 or 7:00 every single day. Sleep off the sick and the nausea stuff...and there is no guarentee.

The one thing it has done for me tho, is keep the mucous at bay...I have nothing but a stuffy nose (this I picked up from John (Skiffin)...or I would have wondered where the snot went...LOL).

I think the chances are that you and Dan will be getting some, if not most of your saliva back, it just takes time...We'll see if I'm not in the same boat 4 months out of treatment as you two are...it is very possible I will be.

p

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

As P51 said....

I was prescribed it mainly for controlling the thick phlegm and mucusous, plus some possibly future salivary retention.

I believe it worked out for me...three years out and I have 95% saliva and 100% taste.

Side effects were itchy welts at the injection site. Eventually after 32 of the 35 prescribed, I started having bad fevers....102.7.

Stopped the Amifostine, fevers stopped and finished my last three rads.

I'd do it again though....damn, did I say that..., I hope I never have to do this stuff again. It's all definitely a rough diet for sure.

JG

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