Amiphostine

Hal61

I've been through one chemo--Cisplatin--and a week of radiation treatments at this point. My worse reaction to anything at this early stage of treatment was to the IM injections of Amiphostine that I got for two days prior to radiation. Amiphostine is given to increase and prolong the life of the salivary glands. Some oncologists use it, but not all. It caused me to be up for seven to twelve hours vomiting at regular intervals. I've read research that indicates only a small percent have a problem with it, and if you are among them, good for you. I didn't think I could manage ninteen more nights like the first two. My RO has prescribed a different medicine, called Sal----, can't remember until I pick it up. It will be in a pill, of a different compound. It's aimed at doing the same job the Amiphostine did, and shouldn't induce the side effects. My radiology tech, and one of the nurses that see me said be sure and tell the Doctor if I experienced the pronounced side effects it had on me. So, if you get a little dizziness or nausea I guess that's to be expected, but if the shot keeps you gakking into the early morning, tell the doctor.

Hondo

Hi Hal

I took the Aniphostine with my first radiation treatment, one thing I did notice you had to take a lot of liquid with it, if not you got sick. The second time I did radiation treatment I did not take it, really to tell you the truth I did not see the different in taking it or not taking it, I still looked like a French fry when I was done.

It cost over $600 dollars a shot and I took it 3 times a week. Like you said some doctors believe in it and some don’t, I think it cost a lot for the little is does but we must also remember we are all different and that might be the reason it works on some but not all.

Take care my friend and God be with you.

soccerfreaks

Amiphostene
I received my dose daily prior to radiation (30-45 minutes prior) in the form of two injections. Since I had 33 of a scheduled 35 rad tx, that means I got 66 shots over the course of seven weeks.

I was one of the fortunate ones who did not get sick as a result of the drug, but I was amply warned that it MIGHT happen. It never did. If it HAD, we would have shut that project down, at least if I complained about it.

As the other respondent notes, the doses are expensive: each of my injections was billed at about $400, and I was getting two of them daily. Fortunately, even if my doctors were not convinced of the success of the drug, they offered it and when I said to go for it, they signed off, so it was covered by insurance.

For those faced with the option of going for it or passing, I would advise strongly that you consider going for it. If it makes you extremely uncomfortable, as Hal indicates, you can choose to quit; but if you are up for it, it may make life a lot more manageable down the road.

I have salivary action.

Take care,

Joe

Skiffin16

Amifostine Injections
Welcome Aboard,

I also had the injections 15 - 30 minutes before each of my 35 radiation exposure. I do believe it helped me as I do have some salivary function, and have actually noticed an increase the last week or so (I'm seven months post treatment). I also didn't get any of the thick ropey mucousous that I've heard some go through.

I have read (especially from several years ago) where a lot of people had sever reactions, most not completeing the regime'.

I did start having reactions around the 31st day of receiving them. I wasn't sure at first what it was because I hadn't been sick or had any problems until then. My reaction started as sever fevers or chills. Two nights in a row, my temperature went to 102.8. Which is really a concern as they had always told me to call in 24/7 if my temp rose to 100.5....

Those two days were Thursday and Friday, no fever or treatments during the week-end. Monday evening a few hours after the injection and radiation, my temperature went to 96.3 then to 102.8. It actually hurt throughout my chest, I was concerned of a heart attach or something, my arms actually ached. I told them after that I wasn't doing anything else until the figured out what was going on... So we stopped the Amifostine and I never had any other problems and fisnished the radiation a few days later, no problems after either.

I can't really say for sure that they helped as I only had them, but I do feel they helped me retain more saliva than if I didn.t I also don't have the thick white saliva anymore like I use to at first.. My radiaologists never brought up the subject, my oncolongist did. She was concerned with getting the thick mucoucous.

God Bless and Good Luck,
John

sweetblood22

Skiffin16 said:

Amifostine Injections
Welcome Aboard,

I also had the injections 15 - 30 minutes before each of my 35 radiation exposure. I do believe it helped me as I do have some salivary function, and have actually noticed an increase the last week or so (I'm seven months post treatment). I also didn't get any of the thick ropey mucousous that I've heard some go through.

I have read (especially from several years ago) where a lot of people had sever reactions, most not completeing the regime'.

I did start having reactions around the 31st day of receiving them. I wasn't sure at first what it was because I hadn't been sick or had any problems until then. My reaction started as sever fevers or chills. Two nights in a row, my temperature went to 102.8. Which is really a concern as they had always told me to call in 24/7 if my temp rose to 100.5....

Those two days were Thursday and Friday, no fever or treatments during the week-end. Monday evening a few hours after the injection and radiation, my temperature went to 96.3 then to 102.8. It actually hurt throughout my chest, I was concerned of a heart attach or something, my arms actually ached. I told them after that I wasn't doing anything else until the figured out what was going on... So we stopped the Amifostine and I never had any other problems and fisnished the radiation a few days later, no problems after either.

I can't really say for sure that they helped as I only had them, but I do feel they helped me retain more saliva than if I didn.t I also don't have the thick white saliva anymore like I use to at first.. My radiaologists never brought up the subject, my oncolongist did. She was concerned with getting the thick mucoucous.

God Bless and Good Luck,
John

i received the amophostine
i received the amophostine shots 15-20 minutes before my 30 radiation treatments. i did not have nausea, but man it hurt and burned when it went in, and the backs of my arms were totally covered, black and blue with bruising. they told me to take benedryl, and tylenol before my shots, as it could spike a fever and have a rash reaction. only had one rash, not fevers also can lower your blood pressure so they monitored that b4 and after radiation treatments. i don't even want to know what i would have been like without those shots. i had only one salivary gland going into radiation. i am still suffering with dry mouth, and severe mucositis, and mouth pain, and my radiation ended 5-15-09.

Skiffin16

sweetblood22 said:

i received the amophostine
i received the amophostine shots 15-20 minutes before my 30 radiation treatments. i did not have nausea, but man it hurt and burned when it went in, and the backs of my arms were totally covered, black and blue with bruising. they told me to take benedryl, and tylenol before my shots, as it could spike a fever and have a rash reaction. only had one rash, not fevers also can lower your blood pressure so they monitored that b4 and after radiation treatments. i don't even want to know what i would have been like without those shots. i had only one salivary gland going into radiation. i am still suffering with dry mouth, and severe mucositis, and mouth pain, and my radiation ended 5-15-09.

Another Thing
Like sweetblood said and I forgot, it did tend to make my injection sites rashy. My injections were in my abdomen circling my belly button pretty much. The area usually had about a 2" rash for several days. Eventually that entire area became really dried out and scaly, took a month or two after finished for that to go away.

They did also check my blood pressure daily before the injection. If it was 100 or lower I think, they would not inject that day. I never had that problem...

I wish they would have mentioned the Benedryl and Tylenol, might have saved me some grief.

They mix it just before you get injected. It's a dry white powder and depending on the nurse they would mix it differently. Some used Saline, others used other solutions....and yes, it did sting for a good 10 minutes or so.

Pam M

Skiffin16 said:

Another Thing
Like sweetblood said and I forgot, it did tend to make my injection sites rashy. My injections were in my abdomen circling my belly button pretty much. The area usually had about a 2" rash for several days. Eventually that entire area became really dried out and scaly, took a month or two after finished for that to go away.

They did also check my blood pressure daily before the injection. If it was 100 or lower I think, they would not inject that day. I never had that problem...

I wish they would have mentioned the Benedryl and Tylenol, might have saved me some grief.

They mix it just before you get injected. It's a dry white powder and depending on the nurse they would mix it differently. Some used Saline, others used other solutions....and yes, it did sting for a good 10 minutes or so.

I'm getting Amiphostine
I get two shots a day, Monday through Friday. They're $500 a day, and no guarantee of success, but I felt like I had to try (and insurance pays now). I, too, was warned that half of the patients who start the Amiphostine regime have to stop at some point because of reactions. I've had 8 of 35 sets so far - light nausea some days moderate twice - one moderate nausea day I skipped lunch before my 3:00 shots - nausea eased significantly after eating. Water intake is stressed, and monitored by my injection nurse - must get a minimum of 85 to 90 ounces the previous day, or no shots. My radiation is usually running behind - we aim for shots to be 30 minutes before radiation - usually ends up around 45 minutes.

I take generic zofran (8 mgs) 30 to 60 minutes before my injections to help avoid/alleviate nausea. I, too, think the shots really sting (not the needle stick, the subcutaneous fluids going in). To help, injection nurse gives my arm fat a jiggle, then I do some arm circles while I'm waiting for my second bp check (bp is checked once before injections, then two more times over the next 25 minutes, then a final time after my radiation treatment). We alternate arms used by day. Often the arm used one day is a little tender and pink the next day, but OK when it's time for it to be used again.

I already have dry mouth coming on - thought at first it was a sign the shots weren't working - not so, I've been told - I won't know until some time after treatment if they worked.

Good luck, all

BeenThereDoneThat

Pam M said:

I'm getting Amiphostine
I get two shots a day, Monday through Friday. They're $500 a day, and no guarantee of success, but I felt like I had to try (and insurance pays now). I, too, was warned that half of the patients who start the Amiphostine regime have to stop at some point because of reactions. I've had 8 of 35 sets so far - light nausea some days moderate twice - one moderate nausea day I skipped lunch before my 3:00 shots - nausea eased significantly after eating. Water intake is stressed, and monitored by my injection nurse - must get a minimum of 85 to 90 ounces the previous day, or no shots. My radiation is usually running behind - we aim for shots to be 30 minutes before radiation - usually ends up around 45 minutes.

I take generic zofran (8 mgs) 30 to 60 minutes before my injections to help avoid/alleviate nausea. I, too, think the shots really sting (not the needle stick, the subcutaneous fluids going in). To help, injection nurse gives my arm fat a jiggle, then I do some arm circles while I'm waiting for my second bp check (bp is checked once before injections, then two more times over the next 25 minutes, then a final time after my radiation treatment). We alternate arms used by day. Often the arm used one day is a little tender and pink the next day, but OK when it's time for it to be used again.

I already have dry mouth coming on - thought at first it was a sign the shots weren't working - not so, I've been told - I won't know until some time after treatment if they worked.

Good luck, all

Belly Shots
I too did the Amiphostene 3 days/week during my radiation treatments (SCC of lymph nodes from unknown primary). I had a tough time with nausea after the shot, but only real bad a few times. I think I skipped 3 shots over the 6 weeks or radiation.

Not sure if it helped....but I do still have some spit! (maybe 25% of what I had prior to my 30 rad treatments). I don't need to carry a water bottle, and as long as I have water handy I can eat whatever I want.

My surgery aniversary was last week.....6 years! All the crud was worth it.

My thoughts and prayers go out to all who are going through this 'detour' in the life, as well as the people in their lives to also bear the brunt of it.

George