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Hep C Discussion Forum -> Post Treatment -> Finished the S/O combo ...now it will be interesting
Post Info TOPIC: Finished the S/O combo ...now it will be interesting
Dzdayscomin


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RE: Finished the S/O combo ...now it will be interesting
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Thanks Maddie, I am 1 month post tx and I feel great except the edema which makes my legs and feet ache constantly, but I have so much more energy and desire to do things I've been going non stop since....I just spent a week with my 14 month old granddaughter and that was the best week I can remember in years, so for those that are in tx or waiting to start just know there is hope and a much better time to come. And though I am not a huge contributor to this site I read it and take strength and knowledge from it and am grateful for those that post so much good info.

So thank all of you !

Duane



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
maddie


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w00t.gif  Great news Duane!  Very happy for you.



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a multiple transfusions in 1981.  Started Sovaldi and Olysio 1/16/14  (No prior treatments) Q80K present.  UND week 4,8 and at EOT.   UND at wk 4EOT, Und at wk 8EOT  SVR 12!!!..SVR 24 :-)
Dzdayscomin


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GM glad to see you have a sense of humor! I am hoping you are SVR and your life improves so you can forget about this crud and get to the fun things us 50 somethins need to be doing !

 

Like fishing and napping !yawn

 

 



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Gator Man


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Congratulations Duane! As your "lab rat" going forward, you will continue UND and end up SVR! Just had my SVR draw at 10 weeks EOT.



-- Edited by Gator Man on Friday 13th of June 2014 08:42:06 PM

__________________

Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
Omnamahshivaya


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I take the chocolate one and mix it in organic plain yogurt with stevia. Or maple syrup B is fine.

Read about it: it helps tremendously with teeth. I had a toothache and after a month it went away taking this

Highest doses of vitamin D. one bottle is plenty

 

http://www.greenpasture.org/public/Products/ButterCodLiverBlend/



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OMJ - started treatment April 25, 2014

Prior to treatment VL 14 million. Liver Levels Abnormal but under 70.

Sovaldi/Olysio

VL: SOT = 14 million.    SOT +2 weeks = 28

AST/ALT: Normal

Week # 7 = UND
patiently_waiting


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Congratulations Duane! That's a very good sign! Both times I relapsed in the past it happened pretty much immediately after stopping treatment.



-- Edited by patiently_waiting on Thursday 12th of June 2014 08:29:17 PM

__________________

42 yrs old: geno 1b, 23mil VL, ALT/AST 269/94 as of Apr '14.  Got HCV when I was 16.  Relapsed from Peg/Riba twice, last time in '08.  Completed Sol/Oly on 9/2/14, UND as of 10/7/14
Dzdayscomin


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Just got the call from my Nurse coordinator ...................................UND................. that is at EOT +2 weeks



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Dzdayscomin


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Well I guess it's 2 weeks now, I had a bunch of labs and stuff last week and there is much improvement, I finally got my Liver team to do the Hep C tests last Friday to determine if I'm UND and I betting I am....... but lets say cautiously.

The dry skin is subsiding some, my feet and legs are always achy, but maybe now it's because I'm really getting active I'm trying to make up for 2 years of neglect on my property?  and I'm pretty sore just about everywhere lol....

I find it interesting that doing something as tedious as cleaning the crud out of the landscape rocks could be so enjoyable :) it's good to feel like doing things even if they are chores.

Broke the other half of the 4th tooth off 3 days after they patched it up ??? maybe I need some Vitamin D or something...any suggestions ?

 

Thanks for the responses, I hope you all fair as well as I have been, because this treatment has been a real blessing !

This forum is a great place to share and learn about other experiences.

Duane



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Groupergetter


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Duane, you and I completed tx just a couple days apart.  I too have lingering problems, fatigue, aches, and skin problems which seem to be getting a bit better (use skin creams).  Having this for so many years we might expect it will take time to see improvements. 

Ironic that EOT is just the beginning of a new chapter.  Perhaps waiting for SVR, and and hoping for improved health helps to keep us going.  I was able to get in the sun without ill affects this weekend, and sore from working in the yard, thankful for that.  We all differ in stages of this disease but we also have much in common.  Still have questions about timeframes one might expect to see improvements in specific areas of health. Perhaps I'll read more in Post Treatment to see if there are additional clues.  Be well.



__________________

1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Peter M


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Hi SuziQ
Just wanted to mention that when I took Berberine I got a lot of stomach pain...so bad I had to stop taking it. I think you mentioned you are taking that. Also...for dry skin I use coconut oil externally and internally. It seems to help a bit.
Cheers!
-Peter
suziq wrote:

Hi Duane,

stomach pain which I've mentioned on other threads



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64 YO - HCV  45 years - GT 1b - F4  - starting VL 7,800,000 - AST 130 ALT 164  - started S/O 4-11-14 - week 2: - AST 37 -ALT 43 - wk 4 VL <40 - UND week 8, 12, eot, +4 +8 +12 SVR!!!  My Blog-Visit hepcstories.wordpress.com!
Dee Dee


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Hi Duane..I had the achey feet and hips ...etc as well. My last dose of meds will be this Friday.. Feeling a little nervous about stopping ... I guess cuz then I have to wait for the news... " is it back" ? The treatment has been way easier to tolerate then peg/RIBA so I can't complain .. But the soreness and aches have definitely been a constant lingering effect. Best wishes...

__________________
G1a prior tx 2005 with peg & RIBA -quit due to bad side effects. Follow up visit showed it was back. Current tx Olysio/sovaldi 673,000 vl on 3/21/14. May 1st undetected vl. EOT 12 weeks undetected!
suziq


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Hi Duane,

I'm into my 5th month post treatment.  Did Merck trial, but some of the same sides.  Had 3 teeth break off during treatment.  I have had muscle pain in my legs that I haven't had before recently.  Actually was limping for several days last week.  stomach pain which I've mentioned on other threads and my skin is very dry too. 

I have decided to go back on the supplements I took before treatment for my liver.  I have not taken them since last August--had to stop for my trial.  I am still UND (I think) but I do have cirrhosis and that will take time to, hopefully, correct.  I still need to heal from 48+ years  of Hep C.  My viral load going into treatment was only 800,000 so the supplements must have been helping some. 

I am, in general, feeling better.  Guess I thought that getting rid of Hep C would solve everything--not thinking of the damage it has done to my liver and body over the years. 

The questions that the trial asked on their questionnaire certainly didn't cover a lot of things, so the trial info is far from complete as to side effects, both during and after treatment.  The S/O trial only went to Phase 2 so much has not been learned.  Post treatment is another step in healing our bodies after the ravages of Hep C.

Yes, now it does get interesting.

SuziQ  



__________________

Geno 1A  Age 82 Treatment naive Cirrhotic Told I had liver disease in 1966. Diagnosed as Hep C 1999.Started Merck clinical trial with Riba on 9/9/2013 Week 1 and 2 <25  Weeks 4, 8, 12,16,18 UND.  EOT Jan 14,2014  EOT +12 UND   JULY 1 2014 EOT+24= SVR
Dzdayscomin


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Thanks Don,

I have peeling skin too, not a rash but more like after a sunburn type peel.

I have noticed post tx.... also 10 days, I have some subtle pains around the liver area, mostly high rib cage and centralized or a little to the right.

Another possible sx is..... I have had 4 teeth break since mid tx? Not sure if this could be a possible sx or just the fact my liver is in such bad shape the the uptake of essential minerals is so diminished, or it's a coincidence and its just timing?

Again my biggest issue is this constant lower leg and feet aching that is relentless,I have pain meds that really help mask it and allow me to be pretty active but I usually pay the next day if I over do the chores.

All said without those meds I'd be a sedentary person feeling very sorry for my condition, so I really appreciate my primary care Dr. Understanding and allowing me to have some control over the suffering and seeing the quality of life it's giving back to me , since using these meds I have been eating much better and doing physical work that I thought id had to give up forever , I put on 10 lbs during the course of tx and the nice part is it's mostly returning muscle mass.

One other off topic question...I have no hair on my legs from the mid thigh down? Is that from edema or poor circulation or what? Anyone else with that issue? And of course the skin is as dry as leather unless 7 put lotion on them which helps reduce that tight feeling.

But other than all that I'm ready to go !confuse

Duane



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
ET


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Hi Duane,

It seems that the leg and toe cramping is more prevalent in cirrhotics, especially decompensated cirrhosis with ascites. The diuretics can make it worse. However, after SVR und, the liver and other organs have an opportunity to improve and the muscle cramping (as well as water retention if any) will subside. I have been slowly reducing my diuretics since finishing the Sovaldi/olysio 12 wk Tx. My main complsint has been the flaking skin condition and sever itching (mostly arms, back, and abdomen). This may be due to high bilirubin, which is also thought to normalize after Tx. I am only 10 days post Tx and have noticed that the skin lesions have almost disappeared. That's a relief.

Best of luck

Don



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GT 1B -HCV since 1970 - started Olysio/Sovaldi 3.3.14 

RBC, Hemoglobin, Hemocrit, Platelets, Serum Albumin, and A/G Ratio are LOW.

Globulin, Bilirubin, AST, AP are HIGH. Child Pugh 4+ cirrohosis HCV UND 4/14/14

 
Dzdayscomin


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Thanks,  they are now doing an RNA test Friday when I get my transplant labs done and MRI, My Nurse coordinator is a good friend of my spouse, so I really get quick responses when I say something like this because they don't want her PO'd at their group LOL...

I don't abuse it, and we have exchanged emails at all times of the day and night when I'm struggling with issues, I get my MRI's read right in the room by a really good Interventional radiologist who is also a DR. and friend of my spouse.

I don't normally squeak....but when I do, pigs fly!

 

smile

 



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Isiscat2011


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Dzdayscomin wrote:

Pretty sure They will do it now........and it will probably be their idea....just like the fact I had to ask for this S/O tx???

 

           __________________________________________________________________________________________________________

Their idea....lol   Well done on calling the tx team and emailing the nurse.  Sometimes you have to do an end run to get things done.  

I love having email access to medical providers although I wouldn't abuse it.  Making phone calls can be so frustrating; by the time you have talked to the 3rd or 4th person you just want to kill somebody. Then, you wait all day for somebody to call you back, just to tell you that you need to talk to somebody else.  What's a patient to do?

Easier to just send an email and if you don't hear back within a reasonable period of time then send another one.  They have to check their emails sometime.  Of course, you can't email if its an emergency, but for other things it can be far less frustrating.  

My fingers are crossed for you (toes too) Duane.  Well done also on completing the tx!!  smile



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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.
Cinnamon Girl


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I think one of the problems we`re seeing with the frequency of viral load testing with Sovaldi/Olysio is that it`s such a new tx combo and doctors aren`t quite sure about the protocol yet.  From what we`ve seen here some people are having viral load tests as often as every 2 weeks whereas others are having to wait till EOT.  It`s true that the success rate is very high although I agree that you`d think the insurance company would expect some feedback considering the high cost of these drugs.  And it`s also very reassuring for the patient to see that the tx is actually working...I think sometimes they forget who`s at the sharp end!

Good to hear things are happening and moving forward now anyway, and sometimes it pays to be a bit `proactive` with doctors!

 



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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.

 

 
Dzdayscomin


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Thank you for the kind words!

I have already been talking to my liver Team outside of the Hep Doc ( because I have a unique situation ) My Wife works at the hospital and has got me set up with the very best Liver team in Mpls. but for treatment they send you to an non-affiliated GI Clinic...not sure why, and the hep guy is not a bad guy or anything, but I don't think sometimes he can put his self in my shoes as to what is important. I asked several times and the answer is "everyone is clearing the virus" so no need???...Well how about a little good news then...it's not like we are abusing the insurance Co. in fact you would think they would want to know the results of their investment in the tx?

So I called my team and now they can harp on the Hep Dr. instead of me, because what I've learned so far today is they are kinda perplexed as well, I made one email to my Nurse coordinator last night at the hospital and my phone has been ringing all morning from my team asking me questions and so forth, so the ball is rolling.

Pretty sure They will do it now........and it will probably be their idea....just like the fact I had to ask for this S/O tx???

 

I'm just glad I have the energy to be a bit punchy today smile

 



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Cinnamon Girl


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Hi Duane, congrats on finishing your treatment and it`s very encouraging that you`re feeling so much better. 

I just can`t understand why you haven`t had a single viral load test done throughout the whole of your treatment, in fact that`s really quite negligent of your doctor.  The fact that your LFT`s have improved is a very good sign but I would insist that you have a PCR viral load test done when you see him tomorrow, it`s important to know how you`ve responded.

So sorry about your father, and of course that must be at the back of your mind, and you need to have the reassurance of knowing that the treatment has worked.

Do let us know how it goes with your doctor, and in the meantime enjoy the nice weather!  Best of luck! 



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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.

 

 
Dzdayscomin


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Well got the labs done today and whatya know no VL test ?12 weeks and not one VL test.
I see the hep doc Thursday and gonna ask why he won't or didn't order the test?
I mean geez a little good news in my world would go a long way, and if i'm close but not UND I'm gonna be a bit po'd because they could have extended treatment without a lapse, and I have no other tx options due to ESLD
Anyway I am confident that it worked because I feel better, considering my overall condition and improved LFT's
I guess the important thing is I got the treatment without any problems other than the initial denials.
So now It's back to the transplant waiting game and I'm sure my MELD dropped some with the improved liver function tests, so that means a pretty long wait to go, but I'll deal with this old leather liver over the transplant procedure as long as I can because I really fear the possibility of complications, my father died of complications from a heart valve replacement the day before discharge...medication error caused tampanod(sp?)
so although it was a fluke it happens and scares the crap out of me! So I guess it's all good to wait.
Anyway I'll post what happens this week.
Nice weather finally here..don't have to wear a jacket :)

__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Dzdayscomin


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Hi to all,

I finished my 12 weeks 5/28/14 and now get labs Tuesday and see the hep doc Thursday...I have yet to have any VL test done thru the entire 12 weeks, and I'm not sure they will even do it now...sounded before like they were just gonna wait until +12 post tx which doesn't make a whole lot of sense if they wanted to extend the tx why wait until I'm off a week? Anyway not to be to funny but it's killin me to wait when I hear everyone else seems to get at least one or two VL tests during tx...a little good news would do wonders. Especially because Friday I have my 3 month MRI and labs for transplant and and pretty sure my portal hypertension is getting worse by the looks of the donut around my naval...having lost a considerable amount of weight in the past 2 years it looks ridiculus.

no 

One other thing does anyone else have constant leg and feet aching? I mean I have sore joints and cramps and all that all the time, but this constant achy leg and feet thing is almost as bad as the moderate acites...this was there before treatment but it has really gotten irritating.

Best part is I really do feel better not 100% better but where I was 12 weeks ago and where I am today is quite different for the better so I'm expecting some good results.

Congrats to all the real tough folks out there that had to endure the hard treatments and won ...because this S/O combo was a breeze from what I've read here.

Fingers crossed! Toes too.... but thats because of the darn crampsbleh

Duane



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
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