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Author Topic: Just Took Last Pill #84.  (Read 12192 times)

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Offline MEG

  • Member
  • Posts: 304
Just Took Last Pill #84.
« on: April 20, 2015, 12:08:59 am »
Hi all,

The day really came. It's April and I began the Harvoni journey in January and I just took my last pill. I lit a candle, gave thanks to all who were part of getting this medicine delivered to my front door.

I'd like to summarize my journey so that people who are beginning may have another one to add to what is now the long list of different type Harvoni experiences.

Firstly, I was diagnosed in 1993(while in my 30s)---after months of worsening profound fatigue, muscle aches, sinus infections.

Transfused in 1974 during cancer treatment--it's thought that this is when I was infected. 

Liver biopsy 1993---mild inflammation.
Fibroscan 2014----score was 3.2
Fibrosure 2014 F0-F1

Viral loads have never been above 2million.
LFT's generally, not more than double.
Bili and PT/PTT always normal.
Platelets in the 250K range.
IL28B---TT type.

Undetectable and LFT's normal since week 4 of Harvoni.

For various reasons, over the years, my hepatologist and I felt that interferon therapy was not for me.  In retrospect, we were right because I have the least favorable IL28 polymorphism for interferon-based therapies.  15% tops get SVR...

My fatigue improved over the years. Changing my nutrition and working on my inner world. I took up writing, photography and cycling. I've been to every type of spiritual retreat ;-) From Benedictine monasteries to Hindu yoga programs.

I learned to pace myself and had good quality of life. Was in 3 relationships(includes my marriage to late husband who died 14 years ago). 

Fast forward to 2015---In October, I caught my first cold of the season and it has led to, essentially, a 6 month stretch of colds, sinusitis(treated twice while on Harvoni) and profound fatigue.  I had considered asking my doctor if we can delay Harvoni tx until I clear these other infections---but I was terrified that the insurance company would change their policies by the Spring. Some of you know that I've been essentially bed bound throughout my therapy. Doctor appointments, shopping, gentle walks with my dog.

RE: Harvoni: During the first 2 weeks I was nauseated, headaches that were relieved with lots of water. I also occasionally felt this what I call a "brain shake." It was weird. From time to time, I felt this surge of energy? electricity? sweeping my brain. Not a seizure and very short-lived(1-2 seconds) but long enough for me to notice.

Week 3 I began experiencing the tinnitus and still have it. Not bothersome.  Nausea had abated. Headaches---none since the beginning.

Insomnia---yes. I've had to take Atarax in order to sleep. Sometimes I've "roughed it out" and the fatigue the next day was horrible.

Weight gain---yes. Increased appetite---yes. I've especially felt it on my better days. Got on the scale this morning to document and I'm up 11 pounds. But, since I've lost so much muscle tone---much of the 11 is pure fat. I see it and feel it in my clothing..

Have had since week 3 these brief periods---minutes---where the brain fog is completely lifted. My ability to focus, to remember while at the same time feeling a type of joy unlike I've felt in a very long time. I had one recently during one of my better fatigue days. I love when these come and looking forward to them lasting forever ;-)

Throughout the 12 weeks, I've struggled with depression. Correlated directly with my level of fatigue. I've not been this compromised since I was diagnosed----some PTSD re: that era certainly surfaced. I've had a wonderful therapist and some great friends(long distance--I'm fairly new to where I now live), and hepatologist that answers his emails promptly. He even sent me a Happy Easter email from his European vacation because he knew how awful I'd been feeling(physically and emotional).  AND you.

The virus becomes an intricate part of our lives in more ways than one. Its symptoms that limit us in varying ways, the social stigma, not being believed when you tell someone that you cannot possibly walk another step---because we don't generally have that disfigured appearance of someone who is very limited in what they can do.

For me, my story, making meaning of the past 20 years, making meaning of the last 6 months that made me relive what happened 20 years ago----is still to be processed and written about.

Above all---being cured means closing a very difficult chapter of my life---the cancer diagnosis during the 70s--with all its uncertainty about whether I would live long enough to graduate from high school. Many people at that time thought that cancer may be contagious. I kept it a secret for years. Then I needed to keep the HepC a secret from most people.

I'm delighted at the thought of not having secrets. Anything else in my life has been confessed about to one person or another....

I'll finish with: a huge bow to all of you. A huge thank you for sharing of yourselves so generously. For your courage and steadfastness to ameliorate this unwelcome entity---and the courage to live with how it changed many of your lives. Day after day after day giving me hope, helping me to stay on course and to feel like I was not alone...

I shall most certainly around and keep everyone posted....
Meg.

May the clinical trials be wrong---and may we see 100% SVRs!!!
« Last Edit: April 20, 2015, 12:30:43 am by MEG »
Logged
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 BubbaT

  • Member
  • Posts: 267
Re: Just Took Last Pill #84.
« Reply #1 on: April 20, 2015, 12:20:04 am »
Congratulations MEG,

Thank you for sharing your story with all of us, I was a late Bloomer, but, Boy, did I Bloom!  Lol. 
Logged
Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline MEG

  • Member
  • Posts: 304
Re: Just Took Last Pill #84.
« Reply #2 on: April 20, 2015, 12:27:13 am »
Thanks Bubba!! So glad to hear that you're feeling better this w/e.
Logged
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 Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Just Took Last Pill #84.
« Reply #3 on: April 20, 2015, 04:57:26 am »
Sometimes it's about the journey as well as the destination. Congratulations MEG. All the best for your continued SVR.
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline GLCII

  • Member
  • Posts: 127
Re: Just Took Last Pill #84.
« Reply #4 on: April 20, 2015, 08:40:58 am »
Congrats Meg

I sure hope you come back with Good News and tell us all about your SVR. I think we would all like to read about your SVR and how much better things are with having HCV. Best of Luck to you!!!
Logged
Pre Tx (VL 12043488) ALT 52/ AST 39
Harvoni Start Date 03/12
2 Week in Tx Results HCV RNA Detected, less than 15 IU/mL. ALT 19 / AST 19
4 Weeks in Tx Results HCV RNA Not detected. ALT 21 / AST 18
12 Week in Tx Results HCV RNA Not detected. ALT 17 / AST 19
--------------------------------------------------------------
Post 12 Week EOT Tx ALT 19/ AST 19 (Undetected)
Post 24 Week EOT Tx ALT 19/ AST 15 (Undetected)

Offline Jjules224

  • Member
  • Posts: 10
Re: Just Took Last Pill #84.
« Reply #5 on: April 20, 2015, 10:43:13 am »
Congratulations!    I take pill number 7 today and look forward to pill # 84.   It does feel like a I have lived my life in a holding patter waiting for a cure.    Not sure how I will feel when it is over--  so excited!   Its inspiring to hear that day 84 really, does arrive!    Mazel !
Logged
1970s - Contracted HCV
1985 -  Diagnosed non A nonB 
1992 -  DX Hep C (Genotype 1a)
viral load 11,000,000
Started Harvoni April 13
( turned down 3 times by insurance-  gutted the equity in my house so I am self pay)   

Happy to meet other folks going through the same journey…. tired of the shame and the disease,

Offline MEG

  • Member
  • Posts: 304
Re: Just Took Last Pill #84.
« Reply #6 on: April 20, 2015, 01:50:42 pm »
@Philadelphia, GLC and Jjules

Thanks so much for your kind and supportive words...I woke up this morning thinking, "really?"!!!
Logged
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 Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Just Took Last Pill #84.
« Reply #7 on: April 20, 2015, 02:02:21 pm »
Congratulations Meg

Thank you so much for sharing your story.  I am inspired by you
I am at the very beginning of my Harvoni journey (day 5)

I wish you continued SVR and will be looking forward to your posts
Logged
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline Bituman

  • Member
  • Posts: 157
Re: Just Took Last Pill #84.
« Reply #8 on: April 20, 2015, 02:33:11 pm »
Congrats Meg!  You did it!  The metaphor would normally be that you are starting a new chapter.  But I believe in your case, you'll start a brand new book!  The way I look at it, you finally, once and for all, kicked that cancer in the butt. 

Way to go Meg! 

Bob
Logged
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: Just Took Last Pill #84.
« Reply #9 on: April 20, 2015, 02:55:45 pm »
@Debula and @Bob

Thanks so much! A new book...hehehe....

SVR for all!
Logged
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 Michael J

  • Member
  • Posts: 8
Re: Just Took Last Pill #84.
« Reply #10 on: April 20, 2015, 04:00:16 pm »
Just taking my first pills.  I am writing this for anyone else out there who might have a similar situation as mine.  I am on day 6 of Harvoni. I am also on day 6 of alcohol abstinence.  I do not feel any side effects from the Harvoni, but boy would I like to have a beer.  I am 1b, probably first infected in the late 60s in Haight Ashbury, San Francisco where I tried every drug and every method of taking the drug that came across my path.  I quit heroin and all drugs in 1971 because they got in the way of doing the things I wanted to do -- except that I then discovered beer.  Beer was legal and satisfied my addictive personality (I smoke Camel non-filters). I did not ever drink to get drunk or high. I suppose I was on a maintenance program of my own device.  No DUIs, no alcohol related job, marital, family, social problems -- so I figured all was well and good.  I have consumed 4-8 beers a day for 40 some years because I just felt like it and had no reason not to.

Now I find out I am stage 4 cirrhosis through lab testing and biopsy.  ALT 50 to 65 and AST 60-to 85.  Viral load 4.7 million.  Are those number very high or what?  Dunno.  I do not know that I have ever had Hep C symptoms.  Is my cirrhosis from drinking beer or does Hep C cause it alone  --  or is it the combination?  Perhaps I have not considered that I have liver problems, thinking that a 66 year old guy who has been physically active in construction and farming for over 4 decades ought to be having tiredness, soreness, joint pain and other issues.
 
     I have been an organic fresh market vegetable grower for 20 years now and have a happy business.  I have studiously avoided crappy food and food additives and chemicals all my life.  Not drinking good craft beers is something I will miss - more out of habit and taste issues than anything else, but the cirrhosis and Hep C is depressing me.

  By the way, I am on Medicare with a supplemental policy through Humana and my cost for the Harvoni is zero.  Low income, I guess.  I have read many posts on this site and I thank you all for the sharing, and wish us all a good remaining life.
Logged
mm
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