Amifostine

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

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.

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.

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

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 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

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 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