Amifostine

stevenl

Hey everybody,

Just got back from rads, and the doc discontinued my amifostine. It made me real sick Wednesday, and I threw up after rads. I gotta tell you guys, that is something you don't want to do. Felt like I was breathing fire. It was terrible. But i guess it's one thing I won't have to hassle with now. I mean it let me down that I couldn't keep it up but I'll live without it. Day 14 today and I don't feel all that bad, 19 more to go!!!!. The finish line draws nigh!!!!

Best to all,
Steve

Hondo

Amifostine

Sorry to hear the amifostine did you wrong Steve I hope you have received enough of it to help. Nice to see you still have a good attitude as you race toward the finish line.

All the best to you my friend

D Lewis

So sorry Amifostine didn't work out for you, Steve,
This must have been what my Rads Onco (the Atlantic Mollusc) is trying to save me from. Here's hoping every one of those 19 remaining days go well for you. Everything is in place and I launch on Monday.

warmly,

Deb L

Skiffin16

Hard to do...
Steve, I couldn't finish mine either.I started getting really sick around day 28, discontinued on day 30, my reaction was fever related.

In all of my reading, it can get pretty nasty. I haven't seen many that say they have made it the entire 35 days.

Good Luck with the other 19 you have to go...

John

Pam M

Me, Too
Steve,

Sorry the Amiphostine had to be discontinued. I think I made it 14 days, then the skin reactions got too bad, and my doc wouldn't continue. But, both of us did get some injections in. And as my rad team said "Radiation is key - Amiphostine is secondary". Glad that you're doing OK (considering) so far. How's the swallowing? I'm at the home stretch - 2 more sessions. My skin has actually improved - it did crack open in a few small places a couple weeks ago - now, it's just peeling and red (doesn't itch nearly as much as it did). Throat and mucous are worse, but that's part of the package we signed up for. Hope you're as lucky as me (or luckier) - I can still swallow liquids and soft foods (not much, but some), and I don't have to have the pain meds 24/7 - so far, I just take them in the evening when I want to try to eat.

Keep trooping. Moving up on halfway through.

Pam M

D Lewis said:

So sorry Amifostine didn't work out for you, Steve,
This must have been what my Rads Onco (the Atlantic Mollusc) is trying to save me from. Here's hoping every one of those 19 remaining days go well for you. Everything is in place and I launch on Monday.

warmly,

Deb L

Monday
Wow, Deb - glad your start day draws nigh - there's just something about feeling like you're taking action. And you are.

Have some fun this weekend, and keep fighting like a girl.

rmkbrad

Glad that you are doing so well.
Steve, I am glad that you are doing so well. As with Deb I start treatment on Monday the 15th also. I was going to do just radiation and now the oncologist want to use Taxol and Carboplatin. I am at mixed feeling about the chemo, I enjoy reading the positive stories and try to avoid the negative ones or the ones that remind me that there is a downside or possible downside to these treatments. Stay stong and keep up the fight, ha ha easy for me to say when I havent started yet.

stevenl

Pam M said:

Me, Too
Steve,

Sorry the Amiphostine had to be discontinued. I think I made it 14 days, then the skin reactions got too bad, and my doc wouldn't continue. But, both of us did get some injections in. And as my rad team said "Radiation is key - Amiphostine is secondary". Glad that you're doing OK (considering) so far. How's the swallowing? I'm at the home stretch - 2 more sessions. My skin has actually improved - it did crack open in a few small places a couple weeks ago - now, it's just peeling and red (doesn't itch nearly as much as it did). Throat and mucous are worse, but that's part of the package we signed up for. Hope you're as lucky as me (or luckier) - I can still swallow liquids and soft foods (not much, but some), and I don't have to have the pain meds 24/7 - so far, I just take them in the evening when I want to try to eat.

Keep trooping. Moving up on halfway through.

Thanks all
Hi everyone,

Thanks for your kind responses. Means a lot to me really! Hey Pam 2 more? Now that's what I want to get to. I can still swallow pretty good and can eat quite a few different things. I am beginning to lose my taste, but I can still smell the food, so that seems to help. Water just flat tastes like sand. I am trying to hold back on the meds, just use them for sleeping really. All in all I won't complain after some of the stories I've read and heard. I just can't say can't complain, because I could, OH, I could. SAD HUH? Just kidding. Pam I hope I do as well as YOU! My skin is not too bad,
I am a redneck anyway. Another just kidding. Again, Thanks so much to all!!!

Bless you all,
Steve

staceya

Steven,
Did you try reducing
Steven,
Did you try reducing the dose. I could not tolerate 500, but 400 was manageable, still awful, but doable.
Take Care

MaryRC

stevenl said:

Thanks all
Hi everyone,

Thanks for your kind responses. Means a lot to me really! Hey Pam 2 more? Now that's what I want to get to. I can still swallow pretty good and can eat quite a few different things. I am beginning to lose my taste, but I can still smell the food, so that seems to help. Water just flat tastes like sand. I am trying to hold back on the meds, just use them for sleeping really. All in all I won't complain after some of the stories I've read and heard. I just can't say can't complain, because I could, OH, I could. SAD HUH? Just kidding. Pam I hope I do as well as YOU! My skin is not too bad,
I am a redneck anyway. Another just kidding. Again, Thanks so much to all!!!

Bless you all,
Steve

Hi Steve
I am glad you are doing so well with your radiation treatments. Have you had to do the peg feeding? 19 days will go by fast.
I am still waiting for surgery. 17 days to go.
Mary in Northern California

staceya

Pam M said:

Me, Too
Steve,

Sorry the Amiphostine had to be discontinued. I think I made it 14 days, then the skin reactions got too bad, and my doc wouldn't continue. But, both of us did get some injections in. And as my rad team said "Radiation is key - Amiphostine is secondary". Glad that you're doing OK (considering) so far. How's the swallowing? I'm at the home stretch - 2 more sessions. My skin has actually improved - it did crack open in a few small places a couple weeks ago - now, it's just peeling and red (doesn't itch nearly as much as it did). Throat and mucous are worse, but that's part of the package we signed up for. Hope you're as lucky as me (or luckier) - I can still swallow liquids and soft foods (not much, but some), and I don't have to have the pain meds 24/7 - so far, I just take them in the evening when I want to try to eat.

Keep trooping. Moving up on halfway through.

Pam,
I am right ahead of
Pam,
I am right ahead of you, I just finished 35 rads yesterday. I did make all my amofostine but had to lower the dose from 500- 400. What a nasty drug..
I do the same thing you do for dinner..am SOOO hungry but nothing wants to go down. My neck did open all up, boy that itching was awful, but it is getting better now..
It is so nice to be going through this with others
Stacey

stevenl

staceya said:

Steven,
Did you try reducing
Steven,
Did you try reducing the dose. I could not tolerate 500, but 400 was manageable, still awful, but doable.
Take Care

Hey Stacey,

Docs decision not mine. I meet with him again on Monday so it will be discussed further.

Best Steve

stevenl

rmkbrad said:

Glad that you are doing so well.
Steve, I am glad that you are doing so well. As with Deb I start treatment on Monday the 15th also. I was going to do just radiation and now the oncologist want to use Taxol and Carboplatin. I am at mixed feeling about the chemo, I enjoy reading the positive stories and try to avoid the negative ones or the ones that remind me that there is a downside or possible downside to these treatments. Stay stong and keep up the fight, ha ha easy for me to say when I havent started yet.

Monday
Hey Brad,

Hang in there man. I see they are wanting to give you chemo. From my research I found that the success rate is greater when these are used in combination, with radiation fighting this crap. What
I did was ask my chemo doc, based on research how will this regimen benefit me? Upon being satisfied with her answer and researching more on my own, I put my complete faith in her. Make sure you are satisfied also. while I was disappointed that my body was unable to handle the amifostine, i am proud that my RO took quick action to protect me. I.E., the faith factor. One thing I know for both you and Deb is this is doable. So starting on Monday go and begin to kick this monsters butt!!!

Thoughts and Prayers
Steve

fbcuthguy

Gradual or Sudden?
Steve-

Was your nausea from amifostine sudden or something you saw coming? I had rad treatment 20 on Friday & have had amifostine each day. They give me zofran before the shot each day & so far I haven't had any problems. I'm just curious to see if there is something I can be watching for. I definitely don't want to experience throwing up. Sneezing is enough to put me on the ground!

Good to see you're hanging in there. I'm 15 away from the finish & I am definitely counting down!

Rob

Fire34

stevenl said:

Thanks all
Hi everyone,

Thanks for your kind responses. Means a lot to me really! Hey Pam 2 more? Now that's what I want to get to. I can still swallow pretty good and can eat quite a few different things. I am beginning to lose my taste, but I can still smell the food, so that seems to help. Water just flat tastes like sand. I am trying to hold back on the meds, just use them for sleeping really. All in all I won't complain after some of the stories I've read and heard. I just can't say can't complain, because I could, OH, I could. SAD HUH? Just kidding. Pam I hope I do as well as YOU! My skin is not too bad,
I am a redneck anyway. Another just kidding. Again, Thanks so much to all!!!

Bless you all,
Steve

Pain Meds
Steve
I thought I was going to man up about all the side effects and pain, but guess what it didnt work. The doctors prescribe meds for your comfort as they, at least mine did, know what the side effects will be. It wont make you any less of a man taking them. Sorry about the amifostine also, what other chemo are you on besides that? I started counting down when I had 10 rads left, had a total of 49. Best wishes and prayers
Dave

Fire34

rmkbrad said:

Glad that you are doing so well.
Steve, I am glad that you are doing so well. As with Deb I start treatment on Monday the 15th also. I was going to do just radiation and now the oncologist want to use Taxol and Carboplatin. I am at mixed feeling about the chemo, I enjoy reading the positive stories and try to avoid the negative ones or the ones that remind me that there is a downside or possible downside to these treatments. Stay stong and keep up the fight, ha ha easy for me to say when I havent started yet.

Chem Feeling
Brad
Taxol & Carboplatin was a couple of drugs I used during induction chemotherapy. The taxol was not that bad for me, it just left the metal taste for a couple of weeks. What kind of radiation therapy are you headed for? Have you been fitted for your mask yet? Remember when the going gets tough the tough get going. Looks like you also have a good support group which helped me a lot. Best wishes
Dave

stevenl

fbcuthguy said:

Gradual or Sudden?
Steve-

Was your nausea from amifostine sudden or something you saw coming? I had rad treatment 20 on Friday & have had amifostine each day. They give me zofran before the shot each day & so far I haven't had any problems. I'm just curious to see if there is something I can be watching for. I definitely don't want to experience throwing up. Sneezing is enough to put me on the ground!

Good to see you're hanging in there. I'm 15 away from the finish & I am definitely counting down!

Rob

sudden
Hey Rob,

I didn't have any warning signs really. Just felt bad one day before the infusion and felt real bad after. Thought I could handle it and I carry my meds with me, well not all of em but for sure the nausea things. I have 2 for nausea one liquid and one pill. The names are too long for me to type.
When I got done with rads it just was more than I could fight off. The next day they quadrupled my
hydration and gave me a steroid and I did O.K. Still didn't feel good though. The next day I just told them after they gave me the amifostine and they gave me something that took about 2 minutes to get in me there was so much of it, and I did fine. And I gotta tell ya, I have felt better ever since
they gave me that long shot. Got out and mowed the yard today and feel pretty good. Gonna go fishing tomorrow, I think. Been seeing your posts Rob and I am praying for you!!

God bless ya,
Steve

staceya

fbcuthguy said:

Gradual or Sudden?
Steve-

Was your nausea from amifostine sudden or something you saw coming? I had rad treatment 20 on Friday & have had amifostine each day. They give me zofran before the shot each day & so far I haven't had any problems. I'm just curious to see if there is something I can be watching for. I definitely don't want to experience throwing up. Sneezing is enough to put me on the ground!

Good to see you're hanging in there. I'm 15 away from the finish & I am definitely counting down!

Rob

Sneezing!
I was floored the first time I sneezed..I thought my head was going to come off!!
And, go figure normally I hardly ever sneeze, during treatment I was sneezing all of the time....

Skiffin16

stevenl said:

sudden
Hey Rob,

I didn't have any warning signs really. Just felt bad one day before the infusion and felt real bad after. Thought I could handle it and I carry my meds with me, well not all of em but for sure the nausea things. I have 2 for nausea one liquid and one pill. The names are too long for me to type.
When I got done with rads it just was more than I could fight off. The next day they quadrupled my
hydration and gave me a steroid and I did O.K. Still didn't feel good though. The next day I just told them after they gave me the amifostine and they gave me something that took about 2 minutes to get in me there was so much of it, and I did fine. And I gotta tell ya, I have felt better ever since
they gave me that long shot. Got out and mowed the yard today and feel pretty good. Gonna go fishing tomorrow, I think. Been seeing your posts Rob and I am praying for you!!

God bless ya,
Steve

Good Fishin
Glad to see you doing the things you normally do Steve. I took care of my yard work and went fishin as much as I could also. But my wife insisted either she or a buddy go with me on the boat at that time. She was concerned, and I wasn't as tolerant to the heat as time went on.

I only had one time that I can think of that I got over heated cutting the grass. I just started making sure that I took plenty of breaks and drank pleanty of water.

If I didn't feel like it or had appointments I'd pay my neighbors lawn service guy to cut it for me a few times.

You'll probaly find as time goes on and closer to ending the rads you'll start getting fatigued easier at least I did. It takes awhile to get your strength back. I still find myself getting tired easier toward the end of the day.

It takes awhile to get everything going again. I'm eight months out and my blood levels just came back into normal ranges this last few weeks. But still on the lower side of normal.

Keep pressing on man, you're almost there....

John

staceya

staceya said:

Sneezing!
I was floored the first time I sneezed..I thought my head was going to come off!!
And, go figure normally I hardly ever sneeze, during treatment I was sneezing all of the time....

Lets talk about amofostine again
Any new thoughts on Amofostine?

Hal61

staceya said:

Lets talk about amofostine again
Any new thoughts on Amofostine?

Talkin' amifostine blues
I can only retell my short story. I tried it twice, my first 2 rads. Threw up most of those two nights. Third day my rad tech said I didn't look good. I thought at that early stage that maybe everybody threw up after radiation, but I was beginning to wonder. He said tell the doc.

I told my rad onc. She said no more amifostine for you, and I quit throwing up. The percentage of people it is intolerable for is pretty small I think. She put me on the old standard "Salagen"--pilocarpine. It didn't do anything. When I told my med onc I was taking it he said, "don't take that stuff."

I started getting my saliva back about 8 months after treatment. About two years from rads and chemo, I have most of it back.

What's that prove? Nada, only that the it supports the evidence that the drug won't tolerate some people; and that some get saliva back without using it.

best, Hal