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Post Info TOPIC: Mt Sinai
tomyboy


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RE: Mt Sinai
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Thanks to both of you. I do respect everyone's opinion.  No one has a crystal ball to predict how every one will respond to treatment.  I just pray he beats this. 

L.



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Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

Tig


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Reread my post.  I said "Of course, it's entirely my own opinion though..." it was simply about two protocols, one with and one without Ribavirin, nothing else. Ribavirin makes most of us feel a little worse, simply because it is part of the equation. Thanks for pointing that out though, i appreciate you letting me clear that up. Not quoting a trial, just an experience. K?

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Isiscat2011


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Tig56 wrote:

While the rates of success with Sov/Riba are impressive and similar to the rates offered by Sov/Led (90+%)

What clinical trial was this, Tig?  

Check the data for GT 1s with cirrhosis.  Even with 24 weeks of Sov/Rib tx the results were significantly lower than the S/L 12 week results.  Not even in the same ballpark as the S/L 24 week results.



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Tig


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While the rates of success with Sov/Riba are impressive and similar to the rates offered by Sov/Led (90+%),there is one significant improvement to the Sov/Led protocol. Of course it's entirely my own opinion though... and its that Sov/Led offer the success without Ribavirin! An effective but very unpleasant drug at times. Just sayin... no But whatever works, right? Good luck!



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Isiscat2011


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Cinnamon Girl wrote:
___________________________________________________________________________________________________

Amazing and unexpected results do happen with Hep C tx sometimes, even against all the odds.  

That is a good point.  While we all strive for the best possible odds even if the odds were only 30% that means 3 people out of 10 would SVR.  If you happen to be in the 30% those odds worked out fine for you.  Statistics don't mean much in terms of individual results.  Likewise, it doesn't matter much if there is a 90% success rate if you happen to be the 1 out of 10 who didn't SVR.

I recall that there were some clinical trials with the Incivek combo where a small percentage of people SVRd after only 8 weeks. You just never know what will happen.

Enjoy your trip to Ireland.  I wish you both the best of luck.  

 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
tomyboy


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Hi all,

Tom went for blood work this week.  Hasn't gotten his results yet but we know that his viral load will be 0.  He spoke to the nurse (whom has dealt with him through all his previous treatments) about why they didn't wait for the new treatment (approved this month)  and she reports that there isn't that much of a difference with the riba combo compared to the other with the exception  of it is only one pill. Reports the solvaldi is really the winning hep c drug and that the others are just "batters up" so we can just continue to pray and hope after Tom finishes his 12 weeks of treatment in November, come April his viral count  will still be 0.  We are excited he will be off of both chemo and solvaldi as we are traveling to Ireland November 5th and I really want him to feel good.   We go back to the city Dec 11th to see his liver doctor and his CT Scan and will inquire of his thoughts of what the nurse says here.  We will asl the doctor down there his opinion and thoughts of what he thinks would be his best bet.  I'm guessing they may wait to see his blood results for three months after completing treatment. Pray he doesn't have to do this again as I am sure the insurance companies get tired of paying for all of these treatments. Very over priced and there are so many people who need it.  Best wishes to all of you.  Happy early Halloween and will keep you all posted. Thanks for the well wishes and prayers.  You are all here when I need to vent or ask questions.  

 

Laura and Tom



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Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

Cinnamon Girl


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Hi Laura, congrats to Tom for making such excellent progress with this tx so far, and great to hear about the improvements in his energy and general demeanour.  Do let us know what the doctor says after his next appointment, and in the meantime try not to get too stressed.  Amazing and unexpected results do happen with Hep C tx sometimes, even against all the odds.  Keep your hopes up and we will be doing the same.

Wishing you both all the very best of luck.  Jill x



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
mallani


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Hi Laura,

I hope we're wrong too. We just give our opinion for your information. See what the docs think. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
tomyboy


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I'm printing this out and will bring it to Tom's next doctor appointment. Now he is freaking out that this treatment won't beat it again and he has wasted 12 weeks of treatment with the effects for nothing.  Hopefully this one works and if not, he can get approved for the stuff coming out in October. It is very expensive and we were really hopeful this time.  I pray you are all wrong and the sovaldi/riba combo works for him and he does beat it this time. He looks better than he has for a long time.  I don't want him to be disappointed again, but I may have ruined that by telling him others experiences.  He does have cirrhosis and had liver cancer to boot.  Thanks for all the info regardless.  I like to be informed when I go to the doctor's with him.  All the best, and thanks for listening.

Laura  

 

 



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Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

tomyboy


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Yes he is on that combo



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Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

mallani


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Whoops!!

Laura, any chance you can discuss this with Tom's doc? 12 weeks of Sovaldi/Ribavirin is unlikely to work, IMHO. I'd want another backup drug, even Olysio. There has been limited use of Sovaldi and Riba in cirrhotics. In one small trial ( for 24 weeks), almost all patients became Undetected within 4 weeks, but most cirrhotics relapsed after EOT.

http://www.ncbi.nlm.nih.gov/pubmed/23982366

 

It's a shame they didn't wait for Sovaldi/ Ledipasvir.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Isiscat2011


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mallani wrote:
______________________________________________________________________________________________

 I hope the Sovaldi/Olysio continues to do its job. Keep us posted. Cheers.

 Just wanted you to know that Tom is on a 12 week Sovaldi/Riba combo, Malcolm.   



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Isiscat2011


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tomyboy wrote:

Dr in city was happy to hear that Tom started the hep c treatment but was surprised his gastro didn't wait for new treatment being approved in October. 

I'm happy to read that things are going well.  Hate to rock the boat but I'm with the Mt. Sanai doc on this.  Any chance the Ledipasvir could be added in October?   An UND is great but it needs to stay that way and Tom's odds of SVR would increase significantly with some Ledipasvir in the mix.



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
mallani


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Hi Laura,

Fantastic news! You must be over the moon. It'll be great to finish the Nexavar, and I hope the Sovaldi/Olysio continues to do its job. Keep us posted. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
tomyboy


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Hi all,

Just reporting in.  We went to Mt Sinai on Sept 11th for Tom's CT liver scan and he is still cancer free.  It was also one month to the day that he started the ribo and  solvaldi combo. Dr in city was happy to hear that Tom started the hep c treatment but was surprised his gastro didn't wait for new treatment being approved in October.  Regardless, it went well and the PA from Mt Sinai called two days ago to say they received  his blood work results  and his viral count is 0.Yippy.......  He still has two months to go on the treatment and we are sure it will continue to be 0 (as with other treatments as well) but for some reason, this time seems different. Our outlook is brighter.   Tom feels great, his color is coming back and his energy has been much higher. We continue to pray that after he completes the treatment he will continue to be virus free.  Double great news is he went to his oncologist yesterday, and he reports he is taking Tom off of the nexavar in another month.  We are extremely happy about that as he has been losing weight from this. I must admit, he reports besides the diarrhea, being on both the oral chemo and the solvadi, wasn't as bad as he thought it would be. He has lost quite a bit of weight, but hopefully will gain it back in a few months. I am over the moon with joy and haven't seen him this ecstatic in a long time.   Please keep him in your prayers as we hope after he completes the treatment, he will continue to be hep c free.......Wishing everyone as much success!!  FYI- I really wish he would get on here himself as he would be quite intrigued with everyone's advise, successes, and histories. Thank you ALL for being here for us.  Best of luck.

 

Laura



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Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

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