How r ya all doing in here?

[mauka]

These  familiar names are a relief :)

jmjm530 ....nygirl...FLGuy...cuteus I may "use" your support again soon :)

Happy to see ya here !

[mycoldfeet]

seems like you know most of the gang, so I'll just add my wecome back and how ya doin? If you need some support, must be a monkey wrench in the works, whatever it is we're here for ya

[friole]

How are you?  Have you recovered from your first tx yet?  Is your hemoglobin back to normal yet?  Boy, you had us worried for awhile.  Soundslike you might be considering re treating soon.  I hope you are well.  I finished a couple of weeks ago - did 56 weeks since I was not clear at 12 wks, I wanted to have 36 weeks clear.  My whites and reds are not back to normal yet -- I can't wait tho.

[mauka]

Thanks so much :)

People in here helped me a lot...it is a great little community!

I getting ready to start meds again
see my post below unde the thread:

New Article from Clinical Options on Treatment

[mauka]

I have dooing great!!!!!! I hope you feel the same now.

Now I have to start theraphy soon again, I'm sorry but I'm in a hurry

I'll talk you you all later...daughter is draggin me to the movies :)

[jmjm530]

Hi Mauka,

Good to hear from you. All the best with your new doc and your next round of treatment !

-- Jim

[cuteus]

you are making me nervous!  yikes, you went pretty low in the hgb dept along with wasabi pea ((where is she?), and you are thinking about going at it again?  I don't think I can do this again! the stress of seeing you and others struggle the first time was hard enough, and I did not have to endure the anemia!
if you must do it again, and you gather the strength to do so, I must be here along with the others to help you along anyway we can/

see ya later

[jmjm530]

I forgot exactly how your last treatment played out. But given your very low hgb level, have you talked to your new doctor about pre-dosing Procrit (epo). Like maybe even two-three weeks before your first shot, or at least with your first shot.

[FlGuy]

A while back we kicked discussion around the concept of pre-dosing riba.  Seems almost appropriate given the info Mike posted.  Do you know the source of that discussion, perhaps the name of an author if it was a paper or a study?  Thanks

[roaming]

what do you mean about pre-treat? Also why did you end up in the er? Hubby has been having flutter problems. Told the gi, who said go to the pcp, who said go to the er, but he would not go there. So we called the gi would said they would get back with us that day. (not) Hooked us with hospital outpatient ekg, took test monday and still have not heard from anyone. I ever called coordinator who said, is they did not find out from nurse they would follow through. (that was weds.) Still have not heard. I guess he is not dying. Was that why you went? for flutters?

[jmjm530]

In Mauka's case, I was talking of course about pre-dosing Procrit (epo) not riba.

Don't remember a study, but did remember someone posting here they were in a trial where the riba was pre-dosed. It's something that I've thought about for a long time and in the very unlikely chance -- make that VERY unlikely chance -- I ever treated again with the current drugs, I would have a riba pre-dosing discussion with my doctor. In fact, it seems that the power punch would be pre-dosing both riba and Procrit to max out the serum riba levels. I imagine some of the cutting edge doctors could be talked into it. In fact, I had one prominent doc agree to follow the Sweedish high-dose riba protocol, but I ended up in the ER before we could proceed farther. Sometimes, they will try things with a patient's prompting they would never dream of recommending because it's so off normal protocol. At least that's the feeling I got.

This guy's eyes actually lighted up when I told him I'd be his guinea pig. And he's someone who runs major, major trials. LOL.

[FlGuy]

The pre-dose question was in my head before I went, but didn't find it's way to the list of Q's I had for the liverhead last week.  I'm sure my tx doc will not be so enlightened.

[jmjm530]

I usually got several follow-up calls/emails from my outside consults if needed. Might be worth touching bases with him.

[FlGuy]

Thanks for the suggestion, I think I'll do that.  The tx doc said he'd execute whatever the Miami guy said and I'd be open to both riba and procrit.  The procrit might be a little tougher with the ins. co.  The riba is about a foot away from me.

[jmjm530]

Forgot how your hgb/Procrit curve went last time, but if you do pre-dose riba, you might have to start Procrit with your first shot or perhaps even earlier. What I used to do was make a plan and then run it by my doc for his yay, nay or negotiated modifications.

All the best.

-- Jim

[Mister beagle bailey]

Welcome back and much luck with your new dr and round of tx,  your in my prayers.

Beagle

[jmjm530]

I was in the emergency room (ER) for anemia at week 2 of treatment.
The "pre-tx" discussion with FLGuy was in reference to a trial I heard about, but I've never heard about it being done in normal practice.