Mike's Sovaldi + Olysio Treatment Log

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MamaLama
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Date Joined Oct 2010
Total Posts : 4786
   Posted 3/3/2014 8:26 AM (GMT -6)   
Florida, US, Post Liver Transplant Male.

First pills this morning, March 3, 2014

12 weeks. No Ribavirin, No Interferon. Through June 1, 2014

Covered by FL Medicaid. No copay.

Baseline blood work March 3, 2014, will edit this post.

Transplant: May 1, 2011 for Hep C, Alcoholic Cirrhosis, Heptocellular Carcinoma

Current Status: Genotype 1a, F3 by recent Fibrotest (Stage 3 fibrosis)

Other medical problems: Renal Disease, Uncontrolled Hypertension, Aortic Stenosis, Basal and Squamous Skin Cancers

Anxiously optimistic.

Best to ALL,

Mama Lama

Old post leading to Treatment: www.healingwell.com/community/post.aspx?f=25&r=r&m=2991538
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL
Began Hep C Treatment: Sovaldi/Olysio March 3, 2014

Post Edited (MamaLama) : 3/22/2014 6:47:56 PM (GMT-6)


steve-ca
Regular Member


Date Joined Feb 2014
Total Posts : 213
   Posted 3/3/2014 11:03 AM (GMT -6)   
Seems like this was a long time coming :)
Can't wait to start seeing some good news coming out of your camp!

SyXx
Veteran Member


Date Joined Nov 2012
Total Posts : 890
   Posted 3/3/2014 11:22 AM (GMT -6)   
So happy to hear this Carol!!!


I cannot wait to hear some good news down the road. I know it is coming.
Sean

Secondary Biliary Cirrhosis
T11-T12 Disc Fusion 10/30/13
L2 & L3 Compression Fractures
DDD Lumbar region
Multiple Annular Tears in Lumbar and Thoracic Spine
Arthritis Lumbar Region

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 3/4/2014 9:22 PM (GMT -6)   
End of Day 2: He had nausea yesterday afternoon, but it resolved in some hours with rest. He felt good enough to go to the bookstore and meet an author of some novels he loves...book 8 just came out!

Today he was busy all day, took his normal nap, worked at his computer, and went to see a film tonight on his own...more blowing up stuff...I'm not a fan.

He likes film but can't stand TV. He is profoundly hearing impaired and simply cannot follow the dialog without blasting the neighbors out. He wears headphones over his hearing aids but it doesn't work that well for him on dialog. Movies really are too loud for normal folks, but perfect for him. We got gift certificates for Christmas....the kids knew what he liked.

So, bottom line, so far so good...he has been alert and busy.

His exercise routine has been negatively impacted by other stuff...he is recovering from shoulder surgery and still in PT for that (can't lift anything...still using stretchy bands). And he has the most AWFUL rash "down there" and cannot bear to walk very far!.

Went to dermo today as rashes are awful -- and he has 3 different RXs for 3 different things...scalp, "down there," and his arms/chest. They gave him 2 weeks of Keflex to take for the existing rash on his arms. Now with Olysio having rashes and sunburns as a common side, he has to be really really careful. Today he wore his long sleeved fishing shirt with SPF60, his Greg Norman hat, and his new SFP 60 fishing gloves...cuts quite the figure. Several years ago I had extra tint put in the front and side windows of the car as the sun here in the sunshine state can feel terrible....so that is going to help also.

Night all, I'm tired,
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL
Began Hep C Treatment: Sovaldi/Olysio March 3, 2014

Post Edited (MamaLama) : 3/4/2014 9:07:53 PM (GMT-7)


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 3/4/2014 10:13 PM (GMT -6)   
Still preferable to interferon/ribavirin. Be well!
nullum beneficium impunitum...

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 3/4/2014 10:17 PM (GMT -6)   
Two hours of nausea and having to wear a fishing shirt beats the **** out of Interferon/Ribavirin every day of the week.

I can't believe you did a whole year and cleared. God bless you for it! You are a strong man...and went back to a very physical job.

You are our hero!

Mikey thinks he has had a good day if he isn't too tired after his shower to have a second cup of coffee without sitting down for 15 minutes!

Ha Ha.

Be well.

Carol
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL
Began Hep C Treatment: Sovaldi/Olysio March 3, 2014

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 3/6/2014 9:52 AM (GMT -6)   
Mid day 4: So far so good. Some nausea a few hours after the pills. He has a giant brown spot on his left arm that is new...like a peach gone bad...it just popped up. He is up, showered and off running errands, so I guess that he's doing pretty well!!! ML
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL
Began Hep C Treatment: Sovaldi/Olysio March 3, 2014

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1077
   Posted 3/6/2014 12:57 PM (GMT -6)   
Hi ml, Good to hear Miley is doing well.. I believe the justice system should use interferon and ribavirin on as a sentence for all felonies, and throw in incivek for crimes against women and children.
Best always. Barry

steve-ca
Regular Member


Date Joined Feb 2014
Total Posts : 213
   Posted 3/6/2014 1:01 PM (GMT -6)   
That sounds pretty good to me- let's hope this will be the norm while on treatment!

AllenM
Regular Member


Date Joined Dec 2013
Total Posts : 223
   Posted 3/8/2014 4:20 PM (GMT -6)   
Good news Mama!
============================================================

"Sovaldi - Everybody deserves this treatment option and it should be made affordable for all!"

Sovaldi + Ribavirin Treatment began February 6th 2014 - 12 weeks of treatment.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 3/8/2014 8:05 PM (GMT -6)   
End of Day 6: No nausea, no new skin stuff, just the same old. Some leg cramps but that is not new either. He was busy today on computer and helped put the porch furniture back on patio...we had house painted. Tomorrow we are going to meet friends from where we used to live in CT for brunch about an hour south of here. I amazed so far.

Best to all in the dragon slaying business this weekend!

And everyone else also.

BTW: I was poking around the Florida Medicaid Forumulary today looking for a dermo med that has been denied by Mike's Medicaid...and, of course it is ON the forumlary so something isn't right here.

When I noticed that the Sovaldi and Olysio are on there as is Incivic...on the March 2014 update. On the February updated formulary it was the same old same old for Hep C--Int and Riba. What a difference a day makes. Mike is sooo lucky.

In 2003 when his viral load was over 7,000,000 at the end of treatment the docs said not to worry, that new meds were right around the corner...that was one long 10+ year corner!

Mama Lama
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL
Began Hep C Treatment: Sovaldi/Olysio March 3, 2014

Post Edited (MamaLama) : 3/8/2014 8:36:22 PM (GMT-7)


ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1077
   Posted 3/8/2014 8:42 PM (GMT -6)   
thats great ml and mike. the meds have built up in his system and he is doing well. and you dont have to worry about low red blood cell issues.
barry

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 3/8/2014 10:17 PM (GMT -6)   
ML,
How often are they going to do blood work? Can't wait to see how things go.
nullum beneficium impunitum...

NormaP
New Member


Date Joined Mar 2014
Total Posts : 1
   Posted 3/9/2014 1:09 AM (GMT -6)   
Hello, I'm Norma. I just found your forum because I was looking for answers. I too am post transplant, liver and kidney. I am coming up on three years, May 10, 2011 at UCLA. Hep C returned immediately and by June of 2013 my liver damage was at Stage 3. My doctor started me on interferon, Rabivarin , and bocepravir. I achieved SRV within the first 8 weeks, yeah. But as of March 1, I was switched over to Olysio and sofusbavir. I will complete my treatment on June 1. So far, so good. I do have a headache all the time, and I guess this rash I have is the photo sensitivity. So far I think it is better...the interferon was making me depressed. Mama Lama you must be an angel. My husband of 38 years just left me. I'm keeping my fingers crossed that your Mike and me will be celebrating in June. TC Norma

Post Edited (NormaP) : 3/9/2014 8:49:44 PM (GMT-6)


music
Regular Member


Date Joined Jan 2014
Total Posts : 272
   Posted 3/9/2014 8:15 PM (GMT -6)   
Ml, you and mike are in our thoughts and prayers. Good to hear the good reports!

music
"No one cares how much you know until they know how much you care." T.R.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 3/9/2014 9:15 PM (GMT -6)   
@NormaP,

Welcome to HW forum fir Hepatitis.

Glad to hear you are doing well post TP and that you recurring HepC is being treated. I'm especially interested to hear how you are handling sides with this. Your first post seems as thlugh you are feeling well.

I am so sorry to hear that your marriage has failed. Many here have struggled with their relationships through the disease process.

I can thnk of so many who might pop in but want to ask a favor.

You have posted on Mike's sovaldi/olysio thread. How about you start a new topic called NormaP's sovaldi/olysio treatment. Cut and paste your intro post there and folks will provide lots of support.

If you need help with tat let us know and I can fiddle with it.

Glad you are out there and have reached out to us.

Best.

MamaLama
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL
Began Hep C Treatment: Sovaldi/Olysio March 3, 2014

HepC&Cirrhosis
Regular Member


Date Joined Jan 2012
Total Posts : 281
   Posted 3/10/2014 5:38 AM (GMT -6)   
Mikey thinks he has had a good day if he isn't too tired after his shower to have a second cup of coffee without sitting down for 15 minutes!

Oh man I can relate! So happy to hear he's on treatment. Keep us posted!!
Deb from Canada
-------------------------------
hep C since '70's, on treatment 4x, deemed decompensated in 2006 from esophageal bleed and experience chronic Hepatic Encephalopathy (take lactulose and Xifaxan). Had evaluation for transplant in 2013, but do not have to go on list yet - MELD 10. Now waiting for non interferon and non ribavirin drugs to be approved here for cirrhotics.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 3/10/2014 2:54 PM (GMT -6)   
I started a long post earlier...but messed up.

Mike got his baseline labs back and is lft's are as they usualy are, elevated, but not desperate:

AST/ALT 88/128
GGT 200

Kidney function not that great, but typical

Bili .2
Creatinine 1.67
BUN 30

Blood counts all low, as usual

WBC 3.5
RBC 3.69
Hemoglobin 11.8
Hematocrit 34.3

Platelets low but not desperate 119

His AFP was up a bit to 18.3

His last VL was 3.7 million. They did that over today as they forgot it the first day before his pills! UGH.

Meld was 9, almost 3 years post TP and 3.5 years sober.

So far so good, but he is very anxious and grumpy today...shouty and easily frustrated. He needs a cream for one of his rashes that isn't on the Medicaid forumulary and he can't seem to get that overcome or find an alternate med that is ON the Medicaid forumlary. So he is....not quite kicking our invisible dog...but nearly.

Best to all in Treatment Land...and everyone else also.

Mama Lama
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL
Began Hep C Treatment: Sovaldi/Olysio March 3, 2014

Post Edited (MamaLama) : 3/10/2014 3:20:31 PM (GMT-6)


Worried daughter2
Veteran Member


Date Joined Mar 2013
Total Posts : 597
   Posted 3/10/2014 7:08 PM (GMT -6)   
@MamaLama...why is his AFP elevated?

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 3/10/2014 7:42 PM (GMT -6)   
Worried Daughter 2...sort of chuckling here. the only one on earth who worries more than you is MIKE. He is about over the moon about the AFP reading. And I have had him climb off the roof with this information: It is over normal range. It is often elevated with chronic Hepatitis C, but generally not over 100. Those with AFP over 4000 pretty much always have HCC. So,though 18 is 3x normal. It is a long long way from 4000. He has gone to bed happy.

He has an MRI and oncology appointment next month and labs every two weeks. Til then there is nothing to do but try to stay focused on his Hep C treatment, which is going well, but for the anxiety.
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL
Began Hep C Treatment: Sovaldi/Olysio March 3, 2014

Post Edited (MamaLama) : 3/10/2014 7:54:07 PM (GMT-6)


MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 3/13/2014 1:45 PM (GMT -6)   
Day 11, mid Week 2: Mike is doing really well. He had a couple of "cranky days" and some nausea early in the treatment, but feels better now. Maybe we both were too nervous.

He is taking his pills mid afternoon instead of mid morning. He is more quiet in the afternoons...resting, reading, napping, working on PC. He takes them with a snack that is more fatty than he might ordinarily choose...ice cream basically. In the mornings when he exercises, runs errands, schedules appointments he didn't feel well taking the pills.

He is not nauseous, he is not cranky, he has no new rashes.

One thing notable: Before he started on March 3rd, he had a blood draw with CBC, lft, Viral Load. BUT, they did a genotyping at teh lab instead of a viral load. He is so pissed, because it won't be a REAL baseline. He will use a Feb 3.7 million number as his baseline. But they did another this monday, on March 10, so it will be amusing, if nothing else, to see how the VL is after a week.

Mama Lama
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL
Began Hep C Treatment: Sovaldi/Olysio March 3, 2014

Post Edited (MamaLama) : 3/21/2014 3:51:43 PM (GMT-6)


SyXx
Veteran Member


Date Joined Nov 2012
Total Posts : 890
   Posted 3/13/2014 2:42 PM (GMT -6)   
Seems like people have been seeing a good decrease in viral load even after a week. I am excited to hear what his is at.
Sean

Secondary Biliary Cirrhosis
T11-T12 Disc Fusion 10/30/13
L2 & L3 Compression Fractures
DDD Lumbar region
Multiple Annular Tears in Lumbar and Thoracic Spine
Arthritis Lumbar Region

steve-ca
Regular Member


Date Joined Feb 2014
Total Posts : 213
   Posted 3/13/2014 4:26 PM (GMT -6)   
I wouldn't be surprised if, from what I've seen, "something" amazing has already happened. I've come across it on another person's 7 day test once. Not trying to jinx anything, though :)

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 3/14/2014 1:46 PM (GMT -6)   
Today is Day 12.

Baseline labs were repeated Day 8 because they didn't do a Viral Load.

Many of the labs were better already.

Of NOTE:

AST/ALT Day 1 - 88/128 Day 8 - 26/48 (AST/ALT before transplant? REALLY HIGH)
GGTP Day 1 - 200 Day 8 - 138

Creatinine Day 1 - 1.67 Day 8 - 1.14 (his nephrologiest will like this)

VIRAL LOAD Feb: 3,700,000 Day 8 - 302 (not thousands, not millions...three hundred two!!!!!)

OMG.
Happy Dance in Florida.

He is tired today and edgy and his hemeroids hurt...I keep telling him you don't die from hemeroids...you die of live disease and he is kicking that in the **S...no wonder he has a sore bottom.

ML
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL
Began Hep C Treatment: Sovaldi/Olysio March 3, 2014

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 3/14/2014 2:35 PM (GMT -6)   
Sounds great! I'll bet he will be undetectable by his next blood work.
nullum beneficium impunitum...
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