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Author Topic: Graduation Day  (Read 17683 times)

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Offline Bituman

  • Member
  • Posts: 157
Graduation Day
« on: May 01, 2015, 10:22:31 pm »
Last night I graduated from “on treatment” to “the waiting game.”  At about 9 PM Arizona time I swallowed Harvoni pill number 84 of 84.  Earlier in the evening I celebrated with a mountain bike ride on Trail 100 in the Phoenix Mountain Preserve, 11.8 miles in 1:25, 919 feet of climbing, average heart rate 138 bpm.  Trail 100 is sort of my home trail.  As you can see from my heart rate, about 80% of my max, my friends really kicked my butt around the trail to celebrate.  Some of them kidded me that I'm going to get faster now that the virus is gone.  Somehow, I doubt it. 

I went to the lab yesterday morning and all the EOT results are in.  I have updated my signature to show EOT.  I'm thrilled with all the numbers.  I am already scheduled for 4 and 12 week testing on May 29 and July 24, respectively.  I think I will have to go in October too. 

This morning I met with my PA that coordinates all this stuff and all the news was good.  Although she didn't divulge how many patients they are treating, she did say THEY HAVE NOT YET HAD A RELAPSE since they began treating last October!  This is the Mayo Clinic in Scottsdale, so one would think they are treating a fairly large number of patients.  I asked if it would be necessary to assess and/or monitor my liver condition and she said that my lab results collectively indicate my liver remains in good health with very little damage.  Basically, she said go forth and be normal.

She told me they still believe 12 weeks is the correct treatment length for Harvoni.  However, she also said that they have quite a few patients that have had success with 8 weeks.  She said they may change their mind some time this year based on the experience gained with the slug of patients they are now treating. 

As far as I can tell, I made it through treatment with few, if any, side effects.  I know some of you are having a rough time on treatment and I consider myself extremely  lucky.  I hope all of you start feeling better soon.  One thing that I am convinced helped me is that I have been very busy, if not somewhat stressed at work the whole time I've been on treatment.  I also spent a lot of time on my bikes and I think that helped too.  I haven't had time to feel bad. 

As I said in my first post three months ago, I thank all the doctors and scientists that stand with us to defeat this monster of a disease.  I'm so happy for all of us, even those that have relapsed.  There are even better treatments being checked out right now.  The PA said "EVERYBODY" will eventually be cured. 

Healing vibes to all and now I join those of you playing the waiting game.  All the best. 

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Graduation Day
« Reply #1 on: May 01, 2015, 10:24:17 pm »
Congratulations. Hope the waiting is fast, easy, and as successful as your treatment was.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Bituman

  • Member
  • Posts: 157
Re: Graduation Day
« Reply #2 on: May 01, 2015, 11:12:45 pm »
Thanks Lucinda.  I am amazed how fast things went.  Seemed like the first week or two just dragged by when I was nervous about treatment.  After that, the time flew.  Most of my waiting will be this summer, and summer in Phoenix goes by so sloooooow. 

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline terih

  • Member
  • Posts: 74
Re: Graduation Day
« Reply #3 on: May 02, 2015, 12:04:25 pm »
Congrats Bituman! Happy to hear you are more streamlined now!!!! Ride on into your new hep free life! Sounds like your Doc has helped you destroy this monster!

P.S. Summer goes by real slow here in Texas too!
(wish there was a sweaty emoji!)   ;)
64 yrs. on this fine planet!
diagnosed 1993
Stage 1 cirrhosis
Genotype 1a
12 wks. Harvoni  Relapse late Feb. 2015
Currently treating with Solvaldi/Olysio
The light at the end of the tunnel, is often not a train!

Offline Bituman

  • Member
  • Posts: 157
Re: Graduation Day
« Reply #4 on: May 02, 2015, 08:33:11 pm »
Summerk goes by real slow here in Texas too!
(wish there was a sweaty emoji!)   ;)

True that.  I grew up in a little town just south of Houston, but spent most of my adult life in Austin.  Phoenix is great but I miss Texas BBQ. 

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline terih

  • Member
  • Posts: 74
Re: Graduation Day
« Reply #5 on: May 03, 2015, 11:51:45 am »
Summerk! Too funny! Yes I do feel like Mother Nature is smirking at me every year, when Summer rolls back around!

I spent lots of years in Austin, had to leave when it got so over crowded, now I'm just south of there. I still like going there, it has turned into a real foodie place, so even the lowly cheeseburger has been elevated to new heights! Lots of good natural and organic places to eat, that has real food. And oh yes, BBQ! Please pass the ribs!! How long has it been since you've had some?
64 yrs. on this fine planet!
diagnosed 1993
Stage 1 cirrhosis
Genotype 1a
12 wks. Harvoni  Relapse late Feb. 2015
Currently treating with Solvaldi/Olysio
The light at the end of the tunnel, is often not a train!

Offline Bituman

  • Member
  • Posts: 157
Re: Graduation Day
« Reply #6 on: May 03, 2015, 04:48:39 pm »
It hasn't been long since I had some good BBQ. There is a Rudy's in Albuquerque where I travel a lot, so I can get my fill there.  Actually there are a couple Rudy's here in Phoenix but they are a long way from my house.  Amazing that Phoenix is such a big town, yet no good home grown BBQ joints.  I have a nice smoker oven I finally bought so I could make my own. 

Austin is one of my favorite places on the planet, but you are right. It's gotten congested and the foodies have taken over.  I had a friend that recently waited in line at Franklins for almost 2 hours!  I told him in that amount of time he could have driven to Lockhart or Elgin or about a half dozen places with BBQ just as good.  If you are south of Austin, you've likely been to the Salt Lick, good open pit.  I use their rub on brisket. 

Okay, I'm hungry now. 

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline terih

  • Member
  • Posts: 74
Re: Graduation Day
« Reply #7 on: May 05, 2015, 07:11:08 pm »
Hi Bituman, Sorry I haven't replied for a couple of days, staying busy, so I didn't have time to worry about today! The new Doc is Dr. Awesome, can't say enough good things about him! He actually told me he likes an educated patient! And he made me know he heard what I was saying! Also very informative man! In case you don't read about it in the other thread, he wants me in their August study on DAA failures! So yeah!!!!!!

I'm glad you've at least got Rudy's! I stayed in Phoenix for a year about 30 years ago and still miss shredded beef tacos! I can't believe they still haven't made it south yet! I heard something totally New Austin today, that will make you laugh! In Austin, people are going to city council to try to close down BBQ places, because they can smell the smoke from them.....
What would Austin be without BBQ??!! People have lost their minds there! And oh yeah, Franklin's, people actually pay people to stand in line for them! Some people have way too much money! Tell your friend to try Hays County BBQ over in San Marcos, they are giving everybody a run for their money!

Hope this finds you having a great day!
64 yrs. on this fine planet!
diagnosed 1993
Stage 1 cirrhosis
Genotype 1a
12 wks. Harvoni  Relapse late Feb. 2015
Currently treating with Solvaldi/Olysio
The light at the end of the tunnel, is often not a train!

Offline MEG

  • Member
  • Posts: 304
Re: Graduation Day
« Reply #8 on: May 05, 2015, 10:03:41 pm »
Bob, huge congratulations. It was a wonderful post. Inspiring, giving us hopeful information---I love that Mayo Scottsdale hasn't had a single relapse..!!!

Enjoy your hepC free life. Looking forward to your confirming SVR.......Indeed, a long chapter will be sealed.

Best, Meg
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Bituman

  • Member
  • Posts: 157
Re: Graduation Day
« Reply #9 on: May 05, 2015, 11:23:05 pm »
Terih-Great news about your new doc!  It should be an interesting study you will be participating in.  I need to check out that other thread.  I just hope they can find something for you to beat the crap out of that persistent virus.  Your positive attitude is amazing and admirable.  I did read an article about the BBQ joints potentially having to capture their smoke...crazy.  Hays Co. BBQ, check.  Is it in San Marcos?  To this day you cannot find a breakfast taco in Phoenix and they don't know what migas are.

MEG-thanks for the encouraging words.  Hope I don't mess up Mayo's statistics!  I guess I will know at the end of this month when I get tested at 4 weeks after EOT.  If we are blessed to achieve SVR, then you and I will certainly have sealed a loooong chapter. 

Hopeful for all of us.

Bob

Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline terih

  • Member
  • Posts: 74
Re: Graduation Day
« Reply #10 on: May 06, 2015, 02:37:08 pm »
Yes it's in San Marcos, right off 35, so easy to find! I make breakfast tacos all the time for dinner, do you make them at home? Sorry about the migas, those I don't know how to make, but if you want I can tell you the fast and easy route to breakfast tacos!
64 yrs. on this fine planet!
diagnosed 1993
Stage 1 cirrhosis
Genotype 1a
12 wks. Harvoni  Relapse late Feb. 2015
Currently treating with Solvaldi/Olysio
The light at the end of the tunnel, is often not a train!

Offline Bituman

  • Member
  • Posts: 157
Re: Graduation Day
« Reply #11 on: May 06, 2015, 10:30:45 pm »
Sorry about the migas, those I don't know how to make, but if you want I can tell you the fast and easy route to breakfast tacos!

What are you waiting for?

Re migas:  http://saltandwind.com/recipes/73-austin-style-migas-recipe

This comes pretty close to how I remember them. Kerbey Lane had what I thought were best migas. 

Bob

PS-I'm in Oklahoma today and tomorrow.  Found a bbq joint in Claremore, Rib Crib.  Not that great.  Not dissing OK bbq, I know they do have good bbq there, for example Billy Ray's in Tulsa.  My smoker oven came from Ponca City. 
« Last Edit: May 06, 2015, 10:44:28 pm by Bituman »
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline debham

  • Member
  • Posts: 68
Re: Graduation Day
« Reply #12 on: May 07, 2015, 09:15:41 am »
Congrats Bob,
I'm looking forward to EOT but it's a ways down the road. Good Luck with your end results. Deb
Diagnosed 2003
VL 300,000
Geno type 1 a
Start TX 4/01/15
VL 2.3 million
Tx Naive
12 wk Tx
Harvoni
Last Ultra Sound
No presents of fibrosis

Offline terih

  • Member
  • Posts: 74
Re: Graduation Day
« Reply #13 on: May 07, 2015, 11:10:30 am »
Thanks for the Migas recipe!

Well I came from Okla., not sure what they are known for other than catfish!  ;) I hope you weren't close to the storms, oh yeah, now I remember what they are famous for!  :o <--- that represents the look on my face for a good half of my childhood!
64 yrs. on this fine planet!
diagnosed 1993
Stage 1 cirrhosis
Genotype 1a
12 wks. Harvoni  Relapse late Feb. 2015
Currently treating with Solvaldi/Olysio
The light at the end of the tunnel, is often not a train!

Offline debham

  • Member
  • Posts: 68
Re: Graduation Day
« Reply #14 on: May 07, 2015, 03:16:50 pm »
Teri,
My next appointment with the Dr. is May 27th I think he may send me for blood work since it will be the end of 8 weeks of treatment and I will only have 4 more weeks to go. But I don't know this Dr. has the personality of a rock, never has much to say. I'm not complaining tho he got me on this treatment. Which I am so thankful for.
Deb
Diagnosed 2003
VL 300,000
Geno type 1 a
Start TX 4/01/15
VL 2.3 million
Tx Naive
12 wk Tx
Harvoni
Last Ultra Sound
No presents of fibrosis

Offline terih

  • Member
  • Posts: 74
Re: Graduation Day
« Reply #15 on: May 07, 2015, 03:51:58 pm »
@Deb, You maybe should share that you've "met" some relapse people and tell him you want some blood work to check your viral load before your appointment. In hindsight, I wish I had not been so "lady like" in dealing with Dr. Putz! Now I would just flat out tell him I want blood work! Doesn't hurt to request! And remember, they are as new to working with this drug, as we are to taking it! Maybe some real life facts would loosen him up a bit! I'm hoping all the best for you, Deb!!
64 yrs. on this fine planet!
diagnosed 1993
Stage 1 cirrhosis
Genotype 1a
12 wks. Harvoni  Relapse late Feb. 2015
Currently treating with Solvaldi/Olysio
The light at the end of the tunnel, is often not a train!

Offline debham

  • Member
  • Posts: 68
Re: Graduation Day
« Reply #16 on: May 07, 2015, 04:04:48 pm »
Teri,
Thanks and I'll be looking for your future posts.
Deb
Diagnosed 2003
VL 300,000
Geno type 1 a
Start TX 4/01/15
VL 2.3 million
Tx Naive
12 wk Tx
Harvoni
Last Ultra Sound
No presents of fibrosis

Offline ma snart

  • Member
  • Posts: 65
Re: Graduation Day
« Reply #17 on: May 10, 2015, 05:55:36 pm »
Hi all, Helen just graduated from 24 week program, going for EOT testing tonight, hopefully have results on Tuesday, I am noticing many others that seem to be relapsing at a far greater rate than we were told from trials, we had a scare at week 17 when Helen showed detected after 7 weeks of being undetected, so we are cautiously optimistic for a SVR in the future, even her doctor said that he had seen a few failures and was at a loss as to what to do, he did prescribe ribavirin to complete the last 4 weeks with Harvoni.
Good luck to all.
Snart
Helen 54 yr old female
Geno 1B since 84 from transfusion
started Harvoni on 11-22-14 with 8.5 million viral
After 8 days 933 viral and normal AST and ALT
Week 10 viral load  UNDETECTED
Week 17    detected 19
Week 18    detected 21
Week 20    UNDETECTED   Doctor did prescribe Ribavirin, but have not taken it yet as we are thinking that weeks 17,18 had to have been mishandled.
All other test have shown normal levels.
Week 21 results  on Tuesday 4-21
Week 4 post Harvoni 24 week plan UNDETECTED!!

Offline atomic dog

  • Member
  • Posts: 160
Re: Graduation Day
« Reply #18 on: May 10, 2015, 09:40:08 pm »
Graduation Day today. I go for my EOT test tomorrow, beginning the next step in this almost lifelong journey. Wish me luck. Best wishes to you all.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline Bituman

  • Member
  • Posts: 157
Re: Graduation Day
« Reply #19 on: May 11, 2015, 08:22:12 am »
Good luck AD!  I doubt you'll need luck, however. 

All the best,

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline MEG

  • Member
  • Posts: 304
Re: Graduation Day
« Reply #20 on: May 11, 2015, 01:17:43 pm »
Congratultions AD!!! Onward to SVR!
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline sugarfree

  • Member
  • Posts: 13
Re: Graduation Day
« Reply #21 on: May 11, 2015, 09:14:04 pm »
Congratulations..I am waiting also..I have been non detected since week 2 and have stayed that way for the past 3 and a half months.  Come September I am allowed to use the word cured!!  I was not as lucky as you..I was exhausted I slept constantly and was nauseous the whole time but I am ND, and it is all worth it.  Good luck!!

 


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