Aa
On a positive note! :)
It's a miracle... 4 Week PCR: 9310! :D
Docs warned my husband before treatment that his chances of success were pretty slim: genotype 1, high viral load, cirrhosis, and overweight; viral load 7.8mil (log 6.89) 8 weeks ago, and after 4 weeks of predosing with Alinia, VL was 17.2 (log 7.24) at the start of SOC. We were so afraid he might be a non-responder...and now...
We just got results of the 4wk PCR, and it's unbelievable: VL was 9310 (log 3.97) -- a greater than 3 log drop in 4 weeks! (And for any of you statisticians, I'd love to hear if that might increase my husband's chances of SVR beyond the 20% odds we were given.) I know it's not undetected... but it sure looks like UND might really be in reach!
In any case, I just wanted to share some hope and good news with this wonderful forum. All of you here have been a great resource -- of knowledge, advice, and support -- for both myself and my husband, and thank you to each and every one of you for being here.
~eureka
PS: If this should have been a "social" forum post, please say so...
Docs warned my husband before treatment that his chances of success were pretty slim: genotype 1, high viral load, cirrhosis, and overweight; viral load 7.8mil (log 6.89) 8 weeks ago, and after 4 weeks of predosing with Alinia, VL was 17.2 (log 7.24) at the start of SOC. We were so afraid he might be a non-responder...and now...
We just got results of the 4wk PCR, and it's unbelievable: VL was 9310 (log 3.97) -- a greater than 3 log drop in 4 weeks! (And for any of you statisticians, I'd love to hear if that might increase my husband's chances of SVR beyond the 20% odds we were given.) I know it's not undetected... but it sure looks like UND might really be in reach!
In any case, I just wanted to share some hope and good news with this wonderful forum. All of you here have been a great resource -- of knowledge, advice, and support -- for both myself and my husband, and thank you to each and every one of you for being here.
~eureka
PS: If this should have been a "social" forum post, please say so...
Marcia2202:
Yes, I was so excited, I was jumping up and down in my office, feeling like the "dancing Snoopy" character on the Peanuts comics. :) Thanks for the warm wishes!
Deb_c430:
It was an amazing feeling. My husband joked that it was too bad I was at work and missed him sliding across the kitchen floor in his socks like Tom Cruise in "Risky Business" lol. I appreciate your encouragement!
Bill1954:
Yes, for my husband "do or die" is more than cliche, so we are both thankful and encouraged. Your own treatment experience makes us humble -- and your posts always educational (or amusing :D). Thanks for all your support.
child24angel:
Elaine, you're always so encouraging, an absolute sweetheart! Just before my husband started treatment a good friend gave him an angel pin which he wears on his hat -- you've become his good luck charm ;) !
fretboard:
Thank you! And I hope the Lord brings you success in your journey as well ...
merryBe:
So often this stuff makes me think "so much to learn, so little time," but in reality, we can number crunch all we want, but you never know until you try -- and "you can't win if you don't play," as they say! :) (Ironically, though, those university docs almost scared my husband into NOT giving it a "college try" with those stats, but as a stage 4 and possible TP candidate, it really was not rocket science.) And thanks for the link on anti-HCC possibilities -- I'll have to check that out.
evangelin:
Thank you -- not only for the kind words, but for showing our way to Alinia too! You and your husband are in my prayers.
kickboxingmom:
Tammy, here's to hoping you both get to UND next round!
justme53:
Agreed! I truly believe that the current "less than 50%" odds given to Stage 4/Geno 1s is discouraging to both patients and physicians (in many immeasurable ways!), but innovation and perserverance is sure to turn the tide. Sometimes you have to push or drag the docs 'out of the box,' but it's good exercise ;).
zazza:
It's looking so good to us, he's actually excited about treatment this week lol. Do you happen to know, if he does get to UND by week 12, would it increase his chances at SVR to do 72 weeks rather than 48 since he's not UND at week 4? The gap between the relapse rates of RVR vs EVRs is wide enough that I have some concern about it...
But right now, it's whoo hooo :D
~eureka
Yes, I was so excited, I was jumping up and down in my office, feeling like the "dancing Snoopy" character on the Peanuts comics. :) Thanks for the warm wishes!
Deb_c430:
It was an amazing feeling. My husband joked that it was too bad I was at work and missed him sliding across the kitchen floor in his socks like Tom Cruise in "Risky Business" lol. I appreciate your encouragement!
Bill1954:
Yes, for my husband "do or die" is more than cliche, so we are both thankful and encouraged. Your own treatment experience makes us humble -- and your posts always educational (or amusing :D). Thanks for all your support.
child24angel:
Elaine, you're always so encouraging, an absolute sweetheart! Just before my husband started treatment a good friend gave him an angel pin which he wears on his hat -- you've become his good luck charm ;) !
fretboard:
Thank you! And I hope the Lord brings you success in your journey as well ...
merryBe:
So often this stuff makes me think "so much to learn, so little time," but in reality, we can number crunch all we want, but you never know until you try -- and "you can't win if you don't play," as they say! :) (Ironically, though, those university docs almost scared my husband into NOT giving it a "college try" with those stats, but as a stage 4 and possible TP candidate, it really was not rocket science.) And thanks for the link on anti-HCC possibilities -- I'll have to check that out.
evangelin:
Thank you -- not only for the kind words, but for showing our way to Alinia too! You and your husband are in my prayers.
kickboxingmom:
Tammy, here's to hoping you both get to UND next round!
justme53:
Agreed! I truly believe that the current "less than 50%" odds given to Stage 4/Geno 1s is discouraging to both patients and physicians (in many immeasurable ways!), but innovation and perserverance is sure to turn the tide. Sometimes you have to push or drag the docs 'out of the box,' but it's good exercise ;).
zazza:
It's looking so good to us, he's actually excited about treatment this week lol. Do you happen to know, if he does get to UND by week 12, would it increase his chances at SVR to do 72 weeks rather than 48 since he's not UND at week 4? The gap between the relapse rates of RVR vs EVRs is wide enough that I have some concern about it...
But right now, it's whoo hooo :D
~eureka
This is looking good! I am so happy for you both. If your husband keeps this pace, he might very well be UND by week 12!
That's GREAT news for you and your hubby and music to my ears as a fellow stage
4-er. Perhaps with more Dr.s thinking out of the box and streamlining tx to fit the patient, we'll see more positive news across the board.
Pam
4-er. Perhaps with more Dr.s thinking out of the box and streamlining tx to fit the patient, we'll see more positive news across the board.
Pam
That is just wonderful news.! I know it is still a long road but encouraging news sure helps.
Blessings,
Ev
Blessings,
Ev
I see his Meld is only 7, 7 is not very high, he's still got a darn good shot at 7
you may want to check out MK-7 also known as Vitamin K-2. this has the most anti hepatic cancer action of any current substance. A lot of folks poo poo it, because they don't understand K-2 is not K-1 and if it's not a drug they doubt its voracity, however several pub med studies have shown remarkable drops in hepatic cancer in patients taking this, far greater drops than placbo effect can account for.
http://www.medhelp.org/posts/show/706857?personal_page_id=2142&;post_id=post_3746721
you may want to check out MK-7 also known as Vitamin K-2. this has the most anti hepatic cancer action of any current substance. A lot of folks poo poo it, because they don't understand K-2 is not K-1 and if it's not a drug they doubt its voracity, however several pub med studies have shown remarkable drops in hepatic cancer in patients taking this, far greater drops than placbo effect can account for.
http://www.medhelp.org/posts/show/706857?personal_page_id=2142&;post_id=post_3746721
I've also seen a couple studies recently where weight was not the factor it was once thought to be. VL is not all important, but how fast the virions are annialated seems to play a bigger role, the weaker they are the quicker they die, the less resistant the overall strain. Cirrosis can vary from stage3/4 out to 5/5....serveral gradations lie with those variables so odds go down, but not eually in all patients. The extent of damage, and the bodies ability to repair play important roles here.
Plus in a recent study of 1b's all thesuper late responders (usually given 3% chance to SVR....well all that treated out.60wk after going under, 100% SVR'd.
That means length of treatment effects result far more than the other combined factors.
I learned all this is this forum and on pubmed. The statistics are changing monthly on this disease so don't let anyone disuade you from giving it the old college try.
Did they give him a Meld or any other scoring numbers?
mb
Plus in a recent study of 1b's all thesuper late responders (usually given 3% chance to SVR....well all that treated out.60wk after going under, 100% SVR'd.
That means length of treatment effects result far more than the other combined factors.
I learned all this is this forum and on pubmed. The statistics are changing monthly on this disease so don't let anyone disuade you from giving it the old college try.
Did they give him a Meld or any other scoring numbers?
mb
I agree with everyone that your Husband has gotten off to a great start. How this would translate statistically is beyond me but his odds have to be much improved.
I wish you the best of luck.
Mike
I wish you the best of luck.
Mike
eureka is right, that's great news, almost half gone in the first month. that's better than half the people do!! And no, people are not statistics. To be honest I think docs feel obligated to tell us worst case scenarios to cover themselves, but it also helps harden a lot of peoples resolve to try their hardest, and probably scares a lot of people into more compliance with tx.
It's really tempting to skip doses after you've been sick so many hundreds of times, but I think remembering the odds helps keep people motivated, and I've heard of some who regularly skip doses...which means non-compliance makes the overall stats read low.
I mean, think how many more SVR there would be if say 20% of patients weren't skipping 20% of their doses!!!!
I even read in here last year someone say not to worry id they took 80 percent of their meds 80% of the time.
Lets think about that.
What did 8 years of Riba/INF trials teach us if anything?
That doseage has a direct corelary to rates of SVR. Lower dosing was tried and tried again, pulsing was tried, tapering in and out...and the one overlying outcome was dose affect outcome.
So to tell someone 80% will do...is to tell them to go ahead and lower their chances by 20%. In my mind at least.
So I'm glad your doc said what he said, I'm in a similar boat....and you can bet your bippy I didn't miss any doses.....so maybe your doc did you guys a favor if you follow.
mb
It's really tempting to skip doses after you've been sick so many hundreds of times, but I think remembering the odds helps keep people motivated, and I've heard of some who regularly skip doses...which means non-compliance makes the overall stats read low.
I mean, think how many more SVR there would be if say 20% of patients weren't skipping 20% of their doses!!!!
I even read in here last year someone say not to worry id they took 80 percent of their meds 80% of the time.
Lets think about that.
What did 8 years of Riba/INF trials teach us if anything?
That doseage has a direct corelary to rates of SVR. Lower dosing was tried and tried again, pulsing was tried, tapering in and out...and the one overlying outcome was dose affect outcome.
So to tell someone 80% will do...is to tell them to go ahead and lower their chances by 20%. In my mind at least.
So I'm glad your doc said what he said, I'm in a similar boat....and you can bet your bippy I didn't miss any doses.....so maybe your doc did you guys a favor if you follow.
mb
Great news!! I'm happy for both of you, good luck with the rest of the journey and God Bless...
fret
fret
Too sweet! I don’t have a clue how this might translate into SVR data, but it’s certainly a tremendous start. Keep at it; this is truly a gift, as he doesn’t have the luxury of time on his side with stage 4 damage. Keep up the good work—
Bill
Bill
This is amazing news!!!! I am so happy for you both. Congratulations. I don't know the percentage of the odds, but I would surely say that it has greatly brought them up.
I leave it to the more experienced ones to answer.
Warm wishes,
Marcia
I leave it to the more experienced ones to answer.
Warm wishes,
Marcia
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