Hey... I just Saw This...

CONGRATULATIONS!!!!!!!
:)

Come to think of it, I may have been using 2 X  40,000 Units, or 80,000 per week.  I did not need to split doses, and used whole vials.  I need to check my journal records, to remember the precise Procrit dosages.  I always remember the Peg and Riba details down to the mcg. and mg., but with the Procrit, I did not place as much thought....I just did the vials twice a week.  I will follow up tonight.

DD

<<Also used Procrit , beginning after three months of tx, and ended up using 20,000 units twice a week until the end of tx.

Wondering how you mechanically split the weekly dose? Did you just draw out half the 40,000 units from the sterile vile, or did you draw into two syringes and kept one refrigerated? Or perhaps some other method. (The "official" recommendation is to draw out 20,000 units and then throw the rest away.)

We have another thread going on how to split doses so your experience might be helpful. Thanks.

JUST SAW YOUR NEWS AND I'M SO HAPPY FOR YOU!!! wow you have been through it! this couldn't have happened for a more desearving person. what a huge relief and time to do some major sighing of relief and of course celebrating!!!!  

GOD'S BLESSINGS TO YOU,

sandi

Congratulations!  Very happy to hear your news.
ambush

I wonder how many slow & non responders would have achieved SVR had the dr be willing to customize their tx to fit their particular status. I know you feel that you would have, had you gone longer than 5 mo after clearing in the first round.  So many drs end tx too soon, lower dosages, etc, decreasing the already low chances for geno 1.  then some folks have to deal with an even harder to treat virus the next time around.  
DD; you had a better medical team than most, that's for sure.

That is great news to hear! Congratulations!!!

You've had a long, hard trail to follow to get to this point. Your 'durability' - and the SVR's - are in perfect lockstep. Thank God.


May God's blessings and mercy be upon you and your family.


David

Simply wonderful news!   You've worked so hard for this, endured so much, and  maintained a real generosity of spirit during your long ordeal.  Warmest congratulations,  bro', and a long, healthy life to you.

Congratulations! regardless of all the unknowns and uncertainties, it must be reassuring to know that durable really does mean durable.

I would say there is no compartments with hiding bugs anymore, or if there are, they must be behind reinforced steel and unable to come out! Enjoy your virological cure as some MDs call it.
I think I will copy your list and do some customizing.
Congrats!

Great news today! Congrats! I know what you mean about the axiety. I'm coming uo on one year shortly and will get a PCR. It makes me crazy waiting for the results each time. I am very hapy for you. LL

DD
Great congratulations on being clear for so long.  What piece of mind you must have.  I hope to get where you are.  Enjoy, and thanks for giving hope to us.

jm
Good luck on the length of your tx.  Better get some ensure to fatten up those extremeties!!

The Hemoglobin status is often subject to ongoing changes, and downward pressures from both the Ribavirin, AND the Pegylated Interferons.  My levels on Procrit usually topped out around 10 to 10.5, and then would slowly drop through the 9's and into the upper 8's.  We increased the Procrit to a 2x weekly level, or 40,000 units, and even with that I eventually drifted from about 10 down to about 8.6 during the final months of tx.  We backed off the Riba for awhile, to 1000 mg/day, but my doctor said that the high doses of Peg-Intron were also causing part of the drop in Hemoglobin.  Luckily I made it to 72 weeks before things got any worse!  My system always tended to react very quickly and very negatively to Ribavirin.  In three months, without Procrit, I went from near 13.0 to the low 8's, which was when we jumped into the Procrit, at 20,000/wk. initially, in order to keep from reducing any of the medications.  The initial few months of Procrit got me up into the upper 9's for awhile, but again, it drifted down steadily, and we went to the twice weekly shot.  
Procrit is allowing many SVR's to occur, that in most circumstances would have been impossible to achieve.  

Keep up the good work, looks like you are on a track to success!!!!  Go for that SVR, and then enjoy the rest of your life!!!

DoubleDose

Doubledose,  That "what if" anxiety regarding relapse is finally at rest for you and that is the best feeling you or any of us could ask for.  Go out and enjoy your life.....you have earned every moment you now have of that peace of mind!  As I head into my 19/48 weeks your story provided me with great hope and inspiration. My worry too is to relapse as it is for so many but your story proves that one can persevere through this journey of healing and achieve that SVR....even if it takes 2 tries! I'm so sorry you had to go through all you did but NOW you know it was worth it. Congratulations Doubledose!
Thank you for being an inspiration to many.
Scott

<<Even with massive Procrit, I still had to move to 1,000 mg. /day during the last two months (of my 18 month round)... of treatment. My lowest RBC readings approached 8.0 in both therapies...You don't want to go there.

DD,

Certainly not! Curious, what was your Hemoglobin during most of your treatment when you were on 1200 riba/day and Procrit? Did it then drop suddenly, or could you see it coming?

I thought once your Hemoglobin stabilized, it remained that way. Is it common for it to drop near the end of treatment? Did you check your iron stores during tx?

In this country, most heptologists are reluctant to prescribe extra iron, but in the Swedish study, everyone used a supplemental iron source. But then again, they were on very high levels or riba.

Thanks again for all your input. You've been there and done that. We can learn a lot here.

Great News Dbl. You gave me some hope here. I will start 2nd round end of summer. We are similar except I am stage 4 now, I still feel I can beat it.


take care

Bob L

Thanks for the advice.

I'm leaning toward 72 weeks...possibly even 2 years.. however based on my EVR (non-detectible at week 6) I know my docs will suggest a shorter course. Unfortunately, most of the 72-week studies are more related to SVR in later responders (between week 12-24), so the only thing to go by here is anecdotal information.

I've been on Procrit since week three and will probably stay on it till the end of treatment although they might reduce the dose at some point if my hemoglobin gets much higher. It's up to 14 now.

I'm on 180/Pegasus and my  riba (1200/day) is quite adequate for my body weight (160 lbs) and I might even increase the riba slowly (very slowly LOL) at some point if I feel strong enough.

It sounds like your relapse in round one might have been furthered by having to lower the riba. But if Procrit wasn't available, then you  really had no choice.

Again, so happy to hear that it finally worked out for you!

Also, I did use ribavirin on my 18 month, successful round, at 1,200 mg/day, and my weight was in the 170's.  Even with massive Procrit, I still had to move to 1,000 mg. /day during the last two months or so of treatment.  My lowest RBC readings approached 8.0 in both therapies.  You DO NOT want to go there!!!!!

DD

To recap my history, I was a 1-b, about 1.2 million previous viral load, and had the virus for at least 25 to 30 years.  Somewhere between stage 2 and 3.  Did my first tx in 1998, which started out at 3x/wk Schering intron & riba, and quickly moved to daily intron/riba after 12 weeks.  Still did not get undetected, so switched to daily, high dose infergen (15 mcg.) plus riba at month 8, and got undetected very quickly.  Had to reduce ribavirin from 1,200, to 1000, to 800 to 600 for last five months.(no Procrit at that time)  Ended tx undetected, after 14 months overall treatment, and the last five months were undetected.  Relapsed in one month after ending tx.

Round II of tx began in 2002 and lasted 18 months.  I used weekly Peg-Intron, at about 2.8 mcg. per kilogram of body weight, which is about double the standard 1.5 mcg./kg dose.  Also used Procrit , beginning after three months of tx, and ended up using 20,000 units twice a week until the end of tx.  I was undetected after 18 weeks of tx, got the 2+ log drop by week 12, and decided with my doctor to go for the full 72 week, extended tx.  This was due to several factors:  Type 1-b,  increasing fibrosis 2/3 stage, previously had relapsed, was not undetected at week 12 (the biggest factor), and am in my mid-fifties.  

I finished undetected, went through ALL the expected side effects, and more!  BUT I continued to remain undetected this time, for the duration, after therapy ended.

With your fibrosis level, and viral load bordering on high, your age, and type 1 status, if I were in your shoue I would do whatever possible to get to 72 weeks of total tx.  At your age, and liver status, you do not want to do this tx again!!!  GT 1's have a tendency to relapse, with shorter tx durations.

Best of luck.  Also, try to not reduce any doses of Peg or Riba throughout tx, and push for Procrit if needed.  It can save your therapy, as well as your life.

DoubleDose

Outstanding, DD--love to hear those words. As long as your already in the club, how about staking out a claim for the rest of us? Heh, heh... Best of luck to you in your future travels!

It could'nt happen to a nicer guy. I would'nt count on getting TOO NORMAL though-Grin. Live Well DD! frank

Well, first of all congratulations! I can only imagine how relieved you must be. Compared to you, I'm at the very beginning of the road (week #13) and even though I was undectable at week #6, I still sweated out my week #12 PCR.

By your name, "DoubleDose" and the few posts I've read, I imagine you have had an interesting treatment story. Do you have a post you can direct me to that outlines your treatment history, or would you mind repeating it?

I'm interested in your age, genotype, fibrosis level, initial viral count, when you firs cleared and what different drugs and quantities you took in order to achieve your SVR.

In my case, I'm close to 60, type IB, stage 3/4, had a 1,500,000 million baseline count. That puts me in a hard-to-treat population but thankfully I was undectable (<5 IU) at week #6 which gives me a hope.

At some point I'll have to decide on how long to continue treatment. Advice has been from 42 weeks (based on my EVR) up to two years based on my age, fibrosis level, etc. I've been leaning toward splitting the difference at 72-weeks, what do you think? Of course, a big part of my decision will be how I'm feeling as I approach the 42-week mark. LOL.

I am very happy for you doubledose. It gives all of us on tx or will be starting tx hope. I also think that one learns through adversity and your outlook going forward proves that. Congradulations and may your dreams come true. alan

Congratulations, I am very excited for you and apreciate your wishes for the rest of us.  I hope that your liver stays strong and continues to reginerate.  It is an amazig organ.

Freddie