Author Topic: will our S/O post treatment please post results 4, 12, 24 EOT (Read 220834 times)

Lynn K · « **Reply #200 on:** February 17, 2015, 09:50:23 pm »

Well even better news woo whoo that is great congrats!

Man if there is anything I want to do after I finish treatment is take a prilosec. I had an upper endo Friday where they said I had mild inflammation from my heart burn. No doubt about that lol

Also great news for those who get a test result like your 2 week post treatment that the battle is not yet lost.

bh4sons · « **Reply #201 on:** February 17, 2015, 09:55:41 pm »

Thanks Lynn.

sunrise · « **Reply #202 on:** February 17, 2015, 10:46:48 pm »

Hey Brad
Hope you are doing ok. What is the latest with doc and tests? Any word on when you start new tx?

badbradley · « **Reply #203 on:** February 18, 2015, 09:01:57 am »

Hey Sunrise,
Hope to be seeing Hepatologist soon to discuss further options. My enzymes are still in normal range. They fell way back into the 20's 1wk into treatment so I at least have the benefit of 6 mths of rest. I'm sure my liver is thankful for that!
I am doing fine, a little bummed yet but pressing forward! Hope you are doing well also.I am looking forward to your CURED post! Take care and have a great day!
Brad

sunrise · « **Reply #204 on:** February 18, 2015, 04:39:30 pm »

Thats good to hear Brad
At least you will be dealing with a physician that specializes in our disease. I'm happy to hear your enzymes are within normal levels, and hopefully they will not change by ths time you start your new tx.
Thanks for the well wishes. I just wish i felt better. I still have pain on my side and my joints hurt. Just hope I cleared the virus and these sides go away. I am praying. Best wishes.. Sunrise

wordforthewise1 · « **Reply #205 on:** February 18, 2015, 11:49:51 pm »

Brad thanks for your support and thanks for encouraging me to share my good news. You guys are wonderful and I feel so blessed! Sorry I took a few days to post but I was praying for strength and courage for you and the others who relapsed. I am standing in agreement with you and others that your cure is coming - soon! To all HepC warriors,

They the wait upon The Lord shall renew their strength;
They shall mount up with wings as eagles;
They shall run and not be weary;
And they shall walk and not faint.
Isaiah 40:31

Much love to you all,

Sharon

trapper · « **Reply #206 on:** February 21, 2015, 05:22:14 pm »

got my 4-week post labs back today without hcvqt test. they didn't see it marked on order. will have Tuesday after reeming ass for wanting to take 30 days to get it. I had a question on alt and ast.
pre-treatment alt 122 pre-treatment ast 64
4-week test on s/0 39 4-week on s/o 20
8-week test on s/o 29 8-week on s/o 24
4- week post test 51 4-week post s/o 31

Has anybody had a rise in ast and alt 4 weeks post treatment. they are still in normal range. has anyone who relapsed on s/o have this happen or do the numbers move around anyway. Makes me wonder if its a precursor to relapsing.
thanks trapper I guess I will find out maybe tues or 12 week post labs.

Katie · « **Reply #207 on:** February 21, 2015, 06:19:46 pm »

Hi Trapper, My understanding is the ALT/AST are not necessarily an indication of hepatitis but just shows the liver may be dealing with something as well as other organs, which could also cause the raise. I wouldn't doubt that when you quit the S/O your liver reacts to it so at this level I wouldn't get too worried. You'll find out Tuesday with the viral load. I know my doctor also mentioned way back when that they pay attention to the ratio of the two, but not sure what that means other than if one is really high and one normal, that also indicates something.

Good luck on Tuesday. Hope it is good news and you can relax. Be sure to keep us informed and we'll be sending you healing energy!

Katie

Lynn K · « **Reply #208 on:** February 21, 2015, 07:05:52 pm »

Hi Trapper

All I can say is when did my 12 week post Sov/Oly test I got my liver function test back first before the viral load and my ALT that was 29 on treatment had jumped to 56 above normal 12 weeks post and when I got my viral load a few days later I had relapsed.

I hope your numbers have increased just as an effect of stopping the meds but just thought you would want to know.

Good luck wishing you SVR

trapper · « **Reply #209 on:** February 21, 2015, 07:50:30 pm »

thanks lynn and Katie

That's the kind of feedback I want so I can figure things out. I keep track of my bloodwork and in 11/13 alt was 77, 3/06/14 alt was 114, 3/2514 alt was123, 8/06/14 alt was122, 10/21/14 alt was121, 11/19/14 alt was 39 4-week s/o, 12/22/14 alt was 29, and 2/12/15 alt was 51. Maybe it moves around a bit depending on how you are eating and things like that. I'll find out Tuesday. thanks trap

sunrise · « **Reply #210 on:** February 22, 2015, 10:11:23 pm »

Wishing you good results trapper. it can be nerve wracking. For sure,. I will say a prayer for you, I sense your trepidation. Try to stay positive, I as well hope for UD for the rest of my life, and really do not want to retreat, but if that what it takes well so be it. It is a blessing we even have these options, keep us up on your results... Sunrise

Picnic · « **Reply #211 on:** February 23, 2015, 01:21:31 pm »

Did SVR4 bloodwork today! All liver enzymes remain normal. Waiting for HCV Quant which should be done on Wednesday. So far so good!

sunrise · « **Reply #212 on:** February 23, 2015, 01:40:15 pm »

That's great Picnic
Good luck on your results. It's good to hear. Have a great day!blessings. Sunrise

bh4sons · « **Reply #213 on:** February 23, 2015, 08:15:38 pm »

I went to the doctor today and got the results of my 12 week post treatment test.

HCV Not Detected!

I'm 57 and figure I've had this disease for 2/3 of my life! After 12 weeks of treatment, it looks to be gone! Pretty amazing.

I go back in 6 months for the next appointment.

Now to get to work on losing 30 lbs and getting back in shape.

I haven't posted much but have been reading a good bit on here and praying for healing for you all and rejoicing with all the successes.

Lynn K · « **Reply #214 on:** February 23, 2015, 08:20:44 pm »

Awesome news BH congrats!

Katie · « **Reply #215 on:** February 23, 2015, 08:22:08 pm »

Wonderful news BH! I am so happy for you and it is very encouraging for the rest of us. Enjoy your FREEDOM from the alien virus.

Whoooo Hooooo!!!!

sunrise · « **Reply #216 on:** February 23, 2015, 10:40:08 pm »

That is such wonderful news! Very encouraging for all of us. Hope for your continuing recovery Bh4sons, and you will be here for your sons. Best wishes on staying SVR forever!!!!Sunrise......happy dance

badbradley · « **Reply #217 on:** February 23, 2015, 10:41:04 pm »

BH,
Well done fellow warrior!! Happy for you! Stay healthy.
Brad

Islandgirl · « **Reply #218 on:** February 24, 2015, 10:31:07 am »

Happy congrats, BH! We share your joy! Best wishes for attaining your health goals and staying SVR forever! ....Islandgirl

bh4sons · « **Reply #219 on:** February 24, 2015, 11:51:26 am »

Thanks to you all for the congrats. Praying for successful treatment for all.

wordforthewise1 · « **Reply #220 on:** February 24, 2015, 08:51:28 pm »

Congratulations to you BH, that is wonderful news!!! I finally got rid of HepC after having for half of my life, I'm 63 now and looking forward to a long HepC-free new life!
Trapper I am praying you will get your undetected news also! We'll all be doing the "happy dance" with you!!!

Sharon

bh4sons · « **Reply #221 on:** February 24, 2015, 10:26:14 pm »

Congratulations to you as well Sharon.

Picnic · « **Reply #222 on:** February 25, 2015, 07:50:29 am »

Just received my 4 week post HCV!! Undetected!!!!! Almost there!!!! Yeah!!!

sunrise · « **Reply #223 on:** February 25, 2015, 08:41:45 am »

Congratulations Larry
That is great news. Especially to wake up to! I bet you are relieved....sunrise

badbradley · « **Reply #224 on:** February 25, 2015, 09:48:27 am »

FIST BUMP!!!

Picnic · « **Reply #225 on:** February 25, 2015, 10:56:41 am »

Thanks Sunrise and Bad Brad!! Any update on new therapy Bad Brad?

charly8 · « **Reply #226 on:** February 25, 2015, 12:19:51 pm »

BH were you on Harvoni? Was it 8 weeks?

edit nevermind saw your old posts, you went for 12 weeks.

You must have been one of the first ones on Harvoni.

bh4sons · « **Reply #227 on:** February 25, 2015, 01:30:35 pm »

Charly8, I was on Sovaldi/Olysio for 12 weeks. I was about half way through when Harvoni came out.

I wish the best for a Not Detected outcome.

trapper · « **Reply #228 on:** February 26, 2015, 03:08:52 pm »

finally, got my 5-week post hcvqt back today. non detected. I like my odds of svr12. later trapper

sunrise · « **Reply #229 on:** February 26, 2015, 03:12:24 pm »

YAY TRAPPER!!!!!!!!!!!

wordforthewise1 · « **Reply #230 on:** February 26, 2015, 04:56:17 pm »

All the way TRAPPER...congratulations!!!

Sharon

bh4sons · « **Reply #231 on:** February 26, 2015, 05:26:18 pm »

Great news Trapper!

Bucky · « **Reply #232 on:** March 06, 2015, 06:18:31 pm »

Hello to all the new (1,200+) forum members who have joined since I last visited. For all of you who have no idea who I am, let me start by saying that I was one of the very lucky and blessed HepC Warriors who in June of last year managed to get approved for treatment with S&O off label. My IDS is wonderful and I still don't know how she persuaded BCBS of NC (Express Scripts) to agree to fork over $162,000 for my treatment but she did it. I only did 12 weeks of treatment because this was what was recommended. As most of you now know it is 24 weeks for someone with a beat up liver (F4). I know that it is kind of rare these days for someone to be prescribed S&O as it seems that Harvoni is the treatment of choice.
My 12 weeks of meds was pretty uneventful except for the sun sensitivity. The greatest moments for me were my lab reports. I was UD EOT, SVR4, SVR12 (some say this is cured) and I go Monday for my SVR24 labs and a definitive "cured" declaration and discharge from the IDS clinic.
It has been a long 9 months but I am thrilled that it is almost over. I have had a MRI and an EGD and I do have a small abdominal varies that requires a follow up EGD in a year. I am still following the healthy liver diet and not drinking alcohol.
My energy level is really up now and I have returned to work after taking a break for treatment and healing.
This forum was a great help to me as I see it is for many of you. Being one of the Warriors who jumped into the unknown waters of DAAs it was scarey at times but there were many members here who supported me and that I got to know, respect and love.
I will post back after my labs next week.
Bucky

Picnic · « **Reply #233 on:** March 06, 2015, 07:21:24 pm »

Happy to hear about your good fortune!I am now post svr4 undetected!

wordforthewise1 · « **Reply #234 on:** March 06, 2015, 08:59:35 pm »

Hi Bucky and thank you for sharing your wonderful news. It's good to hear how the first ones who with S/O are doing. Your story is encouragement for other hepC warriors who are waiting to get their cure, thanks again!

Sharon

HepC CURED, SVR12 on S/O, February 2015

Lynn K · « **Reply #235 on:** March 07, 2015, 02:09:05 am »

Congrats Bucky

Hoping you get the hep c free SVR24 news but I am sure you will!

Bucky · « **Reply #236 on:** March 12, 2015, 08:39:35 pm »

Quote from: Lynn K on March 07, 2015, 02:09:05 am

Congrats Bucky

Hoping you get the hep c free SVR24 news but I am sure you will!

Hi Lynn,
I posted in another thread that I had indeed reached SVR24. I truly hope that you are successful with your treatment and you can get rid of the dragon.
Keep jumping out of those planes and soaring with the birds.
Peace out,
Bucky

Ronaldo · « **Reply #237 on:** March 13, 2015, 01:14:30 pm »

Hi everyone, I went in for my post treatment results yesterday. The lab work was 14 weeks after treatment. I was congratulated and given the results we all hope for.
Negative: HCV RNA Not Detected
I told her I she should have walked in Maury Povich style and opened a sealed envelope with the results. I feel really good for 64 and I really don't know how or when I got it. I think the early 1970's but they had a new pamphlet at the office and it had sharing straws to do drugs so maybe the 90's. I'm just adding that for anyone who thinks there is a safe way to do drugs.
I'll be hoping and praying for all of the warriors.

Lynn K · « **Reply #238 on:** March 13, 2015, 01:50:44 pm »

Congrats that is great Bucky!!

Now go follow your dreams !

Congrats to you too Ronaldo !

badbradley · « **Reply #239 on:** March 13, 2015, 10:37:14 pm »

Ronaldo Another dragon gets his butt kicked! Always makes me smile. Have a great new hep c free life! Brad

sunrise · « **Reply #240 on:** March 23, 2015, 01:07:42 pm »

Hello warriors,
It has been awhile, hope you are coming along well since tx. Brad I hope you get tx. realsoon.
I got my viral load test results back. UD!!!!Praise God and all the researchers that came up with these new meds. ...Blessings Sunrise

bh4sons · « **Reply #241 on:** March 23, 2015, 07:33:26 pm »

That's great news Sunrise! How many weeks is that?

sunrise · « **Reply #242 on:** March 23, 2015, 07:44:23 pm »

Hi bh4sons,
This was my 12week post treatment, so things are looking good. Having some other issues, like heart fluttering, Achilles tendon inflamed. Going to doc tomorrowso I will discuss these issues. I am very thankful though as I think I beat hepc!. How are things going for you?...Blessings Sunrise

bh4sons · « **Reply #243 on:** March 23, 2015, 08:17:36 pm »

That's great news for the SVR12! Hopefully the other issues are temporary and you're on the way to recovery.

I was undetected at 12 weeks. My doctor scheduled the next appt 6 months out, so it will be 9 months when I go in August. I'm still having some digestive issues (which I didn't have prior to treatment), but they are better with Prilosec. My general phys. said to add another two weeks, so a total of 8 weeks on prilosec. Hopefully that will do the trick. If not I'll need to see a specialist about that.

The big thing is the Hep C is gone. My main focus now needs to be getting back in shape.

Katie · « **Reply #244 on:** March 23, 2015, 08:18:03 pm »

you Did it Sunrise.

I am doing a HAPPY DANCE FOR YOU RIGHT NOW! CONGRATULATIONS!

I hope your health continues to improve and you feel better. Glad you are going to the doctor...do you drink caffeinated coffee? I had to switch to decaf due to flutters and it affected my sleep too. Hopefully it is something easy like that.

I am SO excited that you beat the ALIEN DRAGON and are going to have the best summer EVER!

{{{HUGS}}}

Katie

sunrise · « **Reply #245 on:** March 23, 2015, 08:29:36 pm »

Thank you both bh and Katie,
I think your right about the flutters, and I did just get some water processed decaf. I will definitely try cutting back. Think though this weight gain from treatment has alot to do with it.
How are you doing Katie? Good luck with your health journey

Katie · « **Reply #246 on:** March 23, 2015, 08:45:52 pm »

Thanks for asking Sunrise! I am doing good, and go in for another VL test after the middle of April. The new understanding of the EOT low viral loads makes sense to me as each day I feel subtle improvements and I stopped Harvoni a month ago. They'd already be replicating so I figure I feel too good to be sick! Check out Lucinda's post on the Hep C Research forum.

Weight...gaining weight is so easy and taking it off so difficult! Maybe once you get all of your health issues taken care of and having a fun filled healthy summer it will melt off. I am managing my weight and do it better by eating small meals when I am hungry and even break up a meal where I'll eat a salad....wait and have some veggies or protein an hour later. My portions seem to be more controlled than if I let my self get really hungry. If I let it go too long then I tend to stuff myself and am miserable. It seems to work for me. Drinking a lot of water seemed to have helped too, with many things other than the treatment, so I am continuing it. Good luck as we all have to figure out our systems.

Take care and drop in the forum and keep us posted on how you are doing!

Katie

sunrise · « **Reply #247 on:** March 23, 2015, 09:33:53 pm »

Best wishes for your next test Katie. Happy to hear your feeling better. Bh4sons, I hope your digestive issues get better. I find when I start getting acid reflux, I drink more water. I had gotten a script for prilosec but did not like the chemistry of it. Hope you can wean off it soon. Katie you seem so wise like a nurse . I will keep in touch, you all as well. Looks like the cure is here

badbradley · « **Reply #248 on:** March 24, 2015, 08:11:22 am »

sunrise
SVR 12
3/23/2015

badbradley · « **Reply #249 on:** March 24, 2015, 08:20:31 am »

Good Morning Sunrise, I thought that post above looked good all by itself! I thought it would make a nice desktop background. I am happy to see this news for you. Nice to head off to work with Joy in my heart!
Brad

sunrise · « **Reply #250 on:** March 24, 2015, 08:34:14 am »

Thank you so much Brad!
I know it feels great to know, only I hope for you the same. When do you think you will start? I hope very soon. Have a great day. I am praying for you Brad, you will beat this soon also. Blessings Sunrise

dsmith9085 · « **Reply #251 on:** March 24, 2015, 12:52:57 pm »

I have a friend who took Sovaldi for 12 weeks and his hep c went away. But two months later it came back. Has this happen to anyone? Also I'm about to take Having and I was wondering if anybody took it and had bad result ?

Long_Haul · « **Reply #252 on:** March 24, 2015, 05:05:42 pm »

Congratulations Sunrise, I am so happy to hear your news. I know it's been a long time waiting, but well worth it I am sure. Sleep with peace and wake with new energy for the rest of your life! The smile must be hard to get off you face, wear it well.

Best wishes,

AL

Katie · « **Reply #253 on:** March 24, 2015, 06:14:23 pm »

Nice hearing from you again Al! Feel better!

DSmith: There are so many variables and the tests are not sensitive enough to go to zero. Different tests have different sensitivity levels. If there are a few viable viruses hiding out, they can start to replicate and it is exponential. That's why the post treatment tests are so important for determining if the treatment was successful. Harvoni has a good record and you are on the right path. Good luck to you!

Katie

dsmith9085 · « **Reply #254 on:** March 24, 2015, 06:42:48 pm »

Thank so much . Im going to take my Harvoni in another week .

Lynn K · « **Reply #255 on:** March 24, 2015, 10:41:47 pm »

Hi Dsmith and welcome

Do you know how many weeks you will be taking Harvoni? Have you ever treated before? Do you know your Genotype most likely 1A or 1B? Do you know if your liver is still ok or has it been damaged from hep C?

This kind of information and we can know more about how to answer any questions you might have later on.

We can also find clinical trial results based on people similar to your situation to see how the results were but for most treatment naive with minimal liver damage the results have been outstanding in the high 90 percent range to 100% 12 week post treatment sustained viral response also called SVR 12 which many called cured or at least by SVR 24 if the virus hasn't come back by then it is not coming back.

Good luck on treatment

sunrise · « **Reply #256 on:** March 25, 2015, 02:06:47 am »

Thank you so much Al, I was almost numb when I got the call. It seems surreal to finally be rid of a bug that has been sharing my body for 24years! Now it is time to recoup my health as in losing weight and recovering from this joint issue.
dsmith, what was your friend using with sovaldi, as it is not used as monotherapy. Relapse unfortunately happens a small percentage of time, depending how damaged the liver is, whether used drug interaction meds while on tx. Other variables as well. I wish you and your friend the best. I pray we all clear this beast.... Blessings Sunrise

dsmith9085 · « **Reply #257 on:** March 25, 2015, 01:42:58 pm »

Oh Ill be on the 12 weeks program and im Genotype 1b with Hypothyroid . Plus im sixty years old . I got mines through blood transfusion.

Lynn K · « **Reply #258 on:** March 25, 2015, 02:29:33 pm »

Hi dsmith

I don't know how or if hypothyroid issues would affect treatment that is best left for your doctor to answer. Unless someone has similar and knowledge about it.

Your age should not be a factor we here are all over the chart as far as age. How you may have gotten hep c has no impact on treatment and doesn't matter especially here.

What does matter as far as things that relate to treatment results are have you ever tried to treat hep c in the past or are you what is called treatment naive?
Have you had a liver biopsy, fibrosure test, or fibroscan test to see if your liver has any damage if you have any scarring of your liver or have you had enough scarring to have liver cirrhosis?

I hope your liver is still in good shape makes everything better for you and that you have an easy and successful treatment.

Good luck

sunrise · « **Reply #259 on:** June 01, 2015, 11:47:57 am »

Good morning warriors,
Well I am back. It has been 3months orf trying to recouperate, and what a trying time it has been. I take my 24week post tx blood work in 3weeks.
Still having issues, like acid reflux from hell. Working on the weight loss, and trying to deal with joint issues. All in all, I am doing ok. That fact that my liver is healing, and so far SVR is worth it. Hope you all are doing ok in your journey, and will all be cured! Bleessings my fellow warriors

wordforthewise1 · « **Reply #260 on:** June 01, 2015, 10:34:36 pm »

Hi Sunshine, sorry your not feeling your best but I can relate, had joint pains during and post treatment since November 2014, also still having some sun sensitivity. But your right it's so worth the discomfort to have SVR. Joint pains, etc. shall eventually pass. God bless you all,

Sharon

Bucky · « **Reply #261 on:** June 04, 2015, 07:19:09 pm »

Hello All,
I wanted to check in and see what was going on especially with those of us who were treated very early with S&O. It seems that Harvoni has stolen the spotlight but maybe not all the thunder. I am still very very thankful for my wonderful IDS who got my meds approved and got Express Scripts to pay the $162,000.00 for them without any trouble. I still feel like I slid in under the wire for easy approval as ES more or less slammed the door, well maybe left it cracked a bit for the people that followed.

It has almost been a year since I started treatment for 12 weeks (06/16/2014). UD @ 4 weeks , EOT12 weeks, SVR 12 & 24. So now that I am about 36 weeks EOT there are mostly good things to report.

My energy is still improving and since I now won't explode in the sun, I have gotten my yard straighten out from the summer of neglect that it endured last year. My legs and back ache but it is the good hurt from over working them.

I did end up with a strange area of fat under my chin that my IDS thought might have come from the big O since it is a PI. It has now faded and my jaw looks like it did pretreatment.

My PCP ordered blood work the first of this week and my liver & INR panel came back normal...Yea!

After starting treatment I posted about having improved eyesight. Well today I had an eye exam and in the same glasses that I was 20/20 before treatment I am now 20/15.

All and all everything is going well.
Bucky

Lynn K · « **Reply #262 on:** June 05, 2015, 03:00:28 am »

Nice to hear from you again Bucky and CONGRATS on continued SVR and everything else!

sunrise · « **Reply #263 on:** June 05, 2015, 10:13:14 pm »

Hi everyone,
Sounds like you are doing great Lynn, cured! That is great! I know I am being silly, but I still worry that I will relapse. Finally had to take omaprazole for acid rflux which I I never had prior to tx. Also.the joint pains are still there. Bucky sounds like you came thru like a champ! Wordforthewise, best wishes for you also... Blessings Sunrise

Lynn K · « **Reply #264 on:** June 05, 2015, 11:56:45 pm »

I did just get my viral load today you likely saw on the Harvoni thread.

Yup SVR 4 woo whooo!

Yeah I will likely be looking over my shoulder for a long time after the 12 week the 6 months and 1 year tests. But logic tells me if I make it to 12 weeks all is good and chances are very good I will make it to 12 weeks SVR

Best to all

I so missed my prilosec on treatment with Harvoni I have GERD and a hiatial hernia.

I just about kissed the first prilosec I could take post treatment

nicole_1234 · « **Reply #265 on:** June 07, 2015, 07:18:42 am »

Yeah @Lynnk!!!!! So happy for you!!

Bucky · « **Reply #266 on:** June 07, 2015, 11:53:07 am »

Lynn, Congratulations my little Squirrel Buddy! I can't remember, but how many weeks out were you when you relapsed using S&O?
I went to my PCP between the visits EOT 4, EOT 12 and EOT 24 and just had liver panels preformed. My insurance covered it as it was coded preventive and it sure helped me cope with the wait. As you know, normal panels are a very good sign that all is well.
Bucky

badbradley · « **Reply #267 on:** June 07, 2015, 02:07:21 pm »

Quote from: Lynn K on June 05, 2015, 11:56:45 pm

I did just get my viral load today you likely saw on the Harvoni thread.

Yup SVR 4 woo whooo!

Congratulations Lynn! This is encouraging news for S/O relapsers. It is good to see real world success on retreatment. On to SVR 12!
Brad

Lynn K · « **Reply #268 on:** June 07, 2015, 08:02:02 pm »

Quote from: Bucky on June 07, 2015, 11:53:07 am

Lynn, Congratulations my little Squirrel Buddy! I can't remember, but how many weeks out were you when you relapsed using S&O?
I went to my PCP between the visits EOT 4, EOT 12 and EOT 24 and just had liver panels preformed. My insurance covered it as it was coded preventive and it sure helped me cope with the wait. As you know, normal panels are a very good sign that all is well.
Bucky

LOL squirrely as ever

I was only tested at 12 weeks post I had no testing between EOT and 12 weeks last time.

Yeah my 4 week post liver panel was normal this time and then not detected on the VL.

Last year the liver panel my ALT was slightly above normal and then I got my viral load.

Bet you anything I relapsed by 4 weeks last time on S & O

Good luck to all

tapetta · « **Reply #269 on:** June 09, 2015, 10:18:03 pm »

I am new to this forum. I finished tx w/ S&O on April 9, 2015 w/ virus undetected. Will be doing 3 month follow up in July. Had minimal side effects during tx but am now having various gastro problems, and my lipase has been up and down. How did they find your stomach inflammation? Also having irritating muscle fatigue/pain, esp. in thighs.

sunrise · « **Reply #270 on:** June 19, 2015, 01:03:38 am »

Hi Tapetta,
Best wishes on your SVR. Yes the muscle.pain has been awful, since the.middle of.tx, I started noticing a lump on back of ankle, it has affected my Achilles tendon . Since EOT which was Dec 2014, I has spread to both ankles and also my left heel. Some days it is hard to walk. Acid relux, which I never ever had before tx, I had gotten so bad I am now using zantac, as omeprazole is scarey sides of their own. I am having to go back to doc with these issues. He is concerned as since tx. My heart has been acting strange as well. Best of luck on your journey. Next week 24 post tx bloodwork.. So far.SVR thank God. Will let you all know how doc visit goes. He wants tests.....ugh

tapetta · « **Reply #271 on:** June 22, 2015, 01:18:58 pm »

Hi Sunrise- I began taking a smoothie of fresh papaya-3 to 4 heaping spoonfuls;1/3 cup aloe vera juice (from inner stem);1 tspoon turmeric spice;1 emergency C vitamin pack;1 hunk of fresh ginger; 3 or 4 big globs of unflavored,no sugar greek yogurt;handful of kale or spinach leaves;sometimes some banana and or blueberries;a heaping tablspoon of Benefiber;and a lil orange juice,ice; on an empty stomach every morning. I also take papaya enzymes after a big meal. I also drink a full glass of water on the hour.I am beginning to see some improvement in my gastric issues, tho not much in my muscle aches or my mood swings. I find it odd that there is no mention anywhere! of ongoing after- results of any of the clinical trials with S&O. I do realize HOW Fortunate we are to have this tx and hope that time will abate some of our aftereffects. My biggest concern is my fluctuating lipase and hope that I will get results from gastro doc ( consult on 6/29/15). I did extensive research on natural healing for chronic irritation,as I feel that is part of my problem. Hoping your doc visit goes well. With up-most kindred support to all of us warriors, Tapetta

sunrise · « **Reply #272 on:** June 23, 2015, 03:16:26 pm »

Thank you Tapetta
I bought a papaya today so i will cut it up and use accordingly. I forgot about the papaya enzyme! It is good for the digestive tract you are right! I will update on doctor visit. Oh I found that magnesium gel, mixed with coconut oil rubbed on my joints that hurt, seemed to help immensely. I got.the tip speaking with my cousin that has MS. She swears by it for when she gets spasms in legs. Best wishes on recuperating from treatment.... Blessings Sunrise

sunrise · « **Reply #273 on:** July 01, 2015, 11:56:30 pm »

OK THIS IS IT 24POST TX RESULTS UNDETECTED!!!!!CURED CURED CURED!!!!!
I want to thank all of you fellow warriors for being by my side thru all of this. I have.learned many things here on these forums. Again Thank you, and wishing all of you a speedy recovery BLESSINGS Sunrise

Katie · « **Reply #274 on:** July 02, 2015, 01:35:22 am »

YAY Sunrise! I am so happy for you and I sincerely hope you heal and have a wonderful healthy life! This is such wonderful news!

Happy Dance for Sunrise happening Right Now!!!!

Katie

Thanks for the heads up on the magnesium gel/coconut oil. I need to check that out. Do you think it works for arthritis?

trapper · « **Reply #275 on:** July 09, 2015, 12:25:12 pm »

Finally, got 24 week post s/o treatment labs. NOT DETECTED PERIOD. what a relief. I've been worried since end of 12 week treatment and hearing of other people relasping. I was on old protocol and really should of been on 24 weeks (new protocol) because of 23 mil viral load. But it worked and I'm grateful to be rid of this beast. Don't know if I feel much better but I'm not so fatigued as I was with hcv. I seem to have a problem with getting motivated to do things. I live in the sw and the heat really bothers me anymore. I'm 62 so maybe age has something to do with it. Im f3 so maybe my liver will regenerate some in time. thanks to everyone on this form and wish you all cured. thanks again trapper

f

bh4sons · « **Reply #276 on:** July 19, 2015, 07:07:46 pm »

Great news folks on the SVR24 not detected! I actually didn't have a 24 week appointment, but have my 9 month Aug 24th.

I did find out what was causing my digestive issues. I had an ultra sound, which showed my gallbladder was non remarkable. However, son's Father-in-law is a surgeon and said I might have Biliary dyskinesia. There is a special test (Hyda Scan with CCK) that I had done as a result. It showed my gallbladder had an ejection fraction for 7% (normal is 35-50%).

Anyway, I'm having my gallbladder removed and they'll do a liver biopsy while they're in there.

This is probably more than most folks want to know, but just thought I would share, in case other might have similar symptoms.

sunrise · « **Reply #277 on:** July 23, 2015, 06:07:51 pm »

Thank you so much Katie, Trapper and BH4sons!
I truly am happy for all our outcomes being non detected. Best of luck on the gall bladder removal bh. I am currently trying to overcome my side effects I believe was caused by tx. Acid reflux from hell, I am using digestive enzymes and pro iotics. So far so good. I am on my second day without having to use Omeprazole, thank goodness. Katie the magnesium seems to help with crampiness and pain of joints I dont see why it wouldnt help. At this point I am able to be off all pbarmacuticals. Hopefully it will stay this way. Working on weight loss, not easy. Best wishes to all that have been here. Blessings Sunrise

badbradley · « **Reply #278 on:** July 23, 2015, 10:36:37 pm »

Sunrise

Congratulations on your OFFICIALLY CURED status! Thank you for your support through this treatment. Round 2 isn't too far away for me. Gotta kick the Dragon a little harder next time!
Trapper,
BH4sons, Thumbs up to both of you!
Continued good health and SVR's to all!
Brad

sunrise · « **Reply #279 on:** July 24, 2015, 09:56:07 am »

Hey Brad,
Good morning and best wishes on the new tx. Thank you for your well wishes. What did you decide with your dotor decide to go with?
Day 3 on enzyme and probiotic therapy and so far so good. Relief thank goodness. Weight loss is in motion, Let us know when you start your tx Brad, we will help get you thru it

BattleTheBeast · « **Reply #280 on:** July 28, 2015, 09:53:17 am »

Posted on another thread and thought I would share here as well! Congrats to everyone who has battled and won. BRAD you are next!!

Just thought I would share my happy news that came from my Doctors office at 7:30 AM; I reached SVR12!!!

I have battled the beast and won

Post treatment challenges (note that I was actually on treatment much longer than most for a total of 28 weeks)
1. RA Type symptoms started at around week 20 in treatment and just got worse, at week 10 post, they finally started to fade. No RA was detected and they told me it was fibromyalgia
2. As the Pain and RA symptoms have subsided I have been totally exhausted, like mono type exhausted (I really thought the beast was back).

Today I am just grateful and back to work although some days it's really tough to get moving to get there. If I can make it in I can make it for the day so that's my focus. I am trying to walk as much as possible because it's about all I can force myself to do right now but I am hopeful that this will get better as those six plus months of treatment get further behind me. I continue to listen to my body and rest as I can but started to push a little harder to move more.

Stay strong, keep fighting and we will all win this battle.

Mel

sunrise · « **Reply #281 on:** July 28, 2015, 10:07:06 am »

Hey Mel! That is so great! You beat it! Was wondering whatever happened to you. After my 12week, doc said cured, but I was apprehensive until my 24week test came back UD! Halelujah!!! I have the same issues with joints in feet ankle and legs. As I am losing weight.and doing things it is slowly.improving. Good luck Mel, glad.you are on the UD train!!!!

Picnic · « **Reply #282 on:** July 28, 2015, 10:27:07 am »

Beast you made it!!!!!!!!!!!! Join the club!! Picnic

badbradley · « **Reply #283 on:** July 28, 2015, 09:21:04 pm »

Hey Mel I am so glad you won this battle! I did not want to see you have to go through retreatment. You are a survivor. I am Happy for you!

My Retreatment journey has been anything but uneventful -
Feb. - Relapse
Apr. - Hepatologist recommends Harvoni/Riba 12wks
Apr. - Harvoni rejected, Viekira Pak approved (Express Scripts)
Cannot retreat on Viekira Pak -Protease cross resistance issues having failed S/O
May - Requested Harvoni, Request Denied (F3 - F4 fibrosis required)
June - Researched treatment strategies, etc. Request for Fibrospect
June 28 AASLD updates treatment guidelines to include retreatment for my profile
It is Harvoni/Riba 12wks (one less reason for a denial) Plan is to appeal denial, if second denial go to "My Support Path" and try my luck there.
July 1st - "My Support Path" cryteria modified - no longer providing medications for patients with insurance being denied by their providers for unmet payer cryteria, prior treatment failures,etc. etc.
Gastroenterologist says NS3 resistance variances will revert back to wild type in 1 yr. It is hinted that I retreat on Viekira Pak (probably to avoid hassles of appeals)
AASLD advises against this retreatment regimen for my profile
July 28 - Denied request for Fibrospect (considered experimental/investigational and therefore not medically necessary).

So this is where I stand on this 5th annual World Hepatitis Day!
GOOD GRIEF
Brad

Mike · « **Reply #284 on:** July 28, 2015, 09:38:05 pm »

Congrats, Mel!!!!

On with your new life!

Best wishes, Mike

Katie · « **Reply #285 on:** July 28, 2015, 09:59:20 pm »

Quote from: badbradley on July 28, 2015, 09:21:04 pm

Hey Mel I am so glad you won this battle! I did not want to see you have to go through retreatment. You are a survivor. I am Happy for you!

My Retreatment journey has been anything but uneventful -
Feb. - Relapse
Apr. - Hepatologist recommends Harvoni/Riba 12wks
Apr. - Harvoni rejected, Viekira Pak approved (Express Scripts)
Cannot retreat on Viekira Pak -Protease cross resistance issues having failed S/O
May - Requested Harvoni, Request Denied (F3 - F4 fibrosis required)
June - Researched treatment strategies, etc. Request for Fibrospect
June 28 AASLD updates treatment guidelines to include retreatment for my profile
It is Harvoni/Riba 12wks (one less reason for a denial) Plan is to appeal denial, if second denial go to "My Support Path" and try my luck there.
July 1st - "My Support Path" cryteria modified - no longer providing medications for patients with insurance being denied by their providers for unmet payer cryteria, prior treatment failures,etc. etc.
Gastroenterologist says NS3 resistance variances will revert back to wild type in 1 yr. It is hinted that I retreat on Viekira Pak (probably to avoid hassles of appeals)
AASLD advises against this retreatment regimen for my profile
July 28 - Denied request for Fibrospect (considered experimental/investigational and therefore not medically necessary).

So this is where I stand on this 5th annual World Hepatitis Day!
GOOD GRIEF
Brad

What a horrible nightmare Brad! I've seen bits and pieces from you but having it all laid out like this really had an impact on me. {{{{HUGS}}}} When a person has a serious condition, and there is a treatment, what right does the insurance company have to put that person through all the stress and anxiety like they have with you? I am glad you are a fighter and don't ever give up. This just isn't right, period. With the Harvoni results I just can't understand why they are denying you...oh right....money! Damn it! Maybe you could use some examples of cures from this forum. They are here and coming in all the time.

We are here for you and have your back. Wish I had some advise to share and hopefully a moderator can help you!

Katie

badbradley · « **Reply #286 on:** July 28, 2015, 10:24:54 pm »

Quote from: Katie on July 28, 2015, 09:59:20 pm

I am glad you are a fighter and don't ever give up.

Katie

From the Log-Books of Captain John Paul Jones -

"I HAVE NOT YET BEGUN TO FIGHT"
Brad

mollythedog · « **Reply #287 on:** September 02, 2015, 10:55:33 am »

Hello everyone, I finished S/O ribs on 5th June and Friday 4 Sept I go for 12 week EOT blood tests. Like everyone else I was UND at EOT and just 5 weeks later I had a Fibroscan. Before TX it was F4 score 24, it went down to 12, just at end if F3 stage. S/O for me was no problem, b/p a little raised and palpitations which have now gone. Had a transplant in Oct 2013 but hcv recurred after only 2 months. Waiting for TX here in Italy was v. stressful. I had a high viral load but doc didn't tell me how high, he knows I'm anxious and I consider him an amazing person. I had hcc before transplant which didn't cure with chemioembollization (?) so it was an emergency transplant which went perfectly well. Re Roger's post, I know exactly how he feels but it's true, I, like him, got scared to death a couple of weeks ago reading these posts. zSpent entire afternoons looking for some good success stories, perhaps those who got cured just don't post? They have a new life? I looked relapse in the face, cried a bit, mainly cos I have a 22 year old daughter who would be left alone, thought about further treatment, perhaps Harvoni, then after a few really bad days, I put it away and went down to the beach, had lunch out with my friends, swam a lot and started to feel physically like I was just a girl. Today I peeped back here and found some success stories on S/O and decided to come out of hiding. I think if you haven't had a transplant you can't understand how it feels
like I never had interferon so don't know. Treatment was really a piece of cake for me, no sun sensitivity, full of energy, apart from near the end. I have been praying a lot, yes. Now I try not to think about Friday as when I do, my heart races. I mean can you tell from your ALT AST and other results whether or not you're still UND? Or do you have to wait until the viral load test comes back in a few days? Wow, this could the best or the worst day of my life. Hugs to all of you

Picnic · « **Reply #288 on:** September 02, 2015, 11:32:04 am »

Molly,
I too am a transplant patient. Hep C caused liver cancer. It will be 10 yrs in November. I had hep C return after transplant but it recurred only mildly. I was treated last summer with s/o for 24 months. Thank God I am now cured 12 and 24 week post UND. I heard that liver enzymes start to rise when you relapse. I will pray for your UND on Friday. Stay in touch! Larry

sunrise · « **Reply #289 on:** September 02, 2015, 09:16:41 pm »

Hi Molly, I am praying for you as well. Feel confident as usually relapse will happen by the 4week mark, so I think you got this. Hi Picnic!Good to see you are doing well. Mel congrads!
Now as for me I wonder when the inflammation in Achilles tendons and now left heel will go away, as well as my terrible acid reflux. All happened since treatment. I did develop Achilles inflammation during tx, but dr of course did not know what was going on. I just now got a referral for orthopedics and I have been off tx since end of year. Oh well, just keep plugging everyone!!!

sunrise · « **Reply #290 on:** September 02, 2015, 09:20:39 pm »

Oh and Brad! Give em hell. You need to get your.treatment going already. What is their problem? Makes me so angry.....

Bucky · « **Reply #291 on:** September 03, 2015, 03:01:35 pm »

Hello members, I thought that I would check in since it has been several months to let you know what's up. It has been over a year since I finished my treatment and I have learned a few things. I had a MRI the first of the year for cancer screening and recently I had an US for further monitoring. My liver and spleen have both shrunk. My liver is now in the upper limits of normal while my spleen is still a little large. The radiologist pulled up my scans from over a year ago and he said that I had better blood flow and it appeared that the portal hypertension wasn't as bad because the smaller veins in my liver and spleen did not have blood tiring to use them to get around the main veins. I took this as very good news.
I received the report of the US online and the last sentence stated:
US ABDOMEN LIMITED - Final result (08/28/2015 3:01 PM EDT)

Impressions:

Cirrhosis with findings compatible with portal hypertension. No focal hepatic lesion identified. Please note that the ultrasound sensitivity for detecting focal lesions is decreased in the background of cirrhosis. If there is a clinical concern for focal liver lesion (like elevated serum AFP levels) a triple phase CT or abdominal MRI should be performed for screening.

They have the latest US equipment where I am seen so I was a little surprised by this statement. I contacted my gastro and he said that yes indeed the US has a difficult time picking up small focal lesions when someone has cirrhosis. If this is the case as long as my liver panels remain normal then I am going to just monitor (with my gastro's approval) my serum AFP levels and stop the Ultra Sounds. It seems like a waste of money to me if it can't spot focal lesions.
Has anyone run into this or heard this information about their US?
Bucky

mollythedog · « **Reply #292 on:** September 04, 2015, 05:11:55 pm »

Quote from: sunrise on September 02, 2015, 09:16:41 pm

Hi Molly, I am praying for you as well. Feel confident as usually relapse will happen by the 4week mark, so I think you got this. Hi Picnic!Good to see you are doing well. Mel congrads!
Now as for me I wonder when the inflammation in Achilles tendons and now left heel will go away, as well as my terribl tue e acid reflux. All happened since treatment. I did develop Achilles inflammation during tx, but dr of course did not know what was going on. I just now got a referral for orthopedics and I have been off tx since end of year. Oh well, just keep plugging everyone!!!

mollythedog · « **Reply #293 on:** September 04, 2015, 05:27:04 pm »

Mollythedog Here,
Hello Larry et al. So you know about transplant! Well today, Friday, I discovered...relapse. Liver enzymes 284 260. What a disappointment. I've been so fit and healthy and full of energy, feels like a joke in bad taste. I guess I suspecyas others with only 12 weeks s/o and low dose riba had failed before me. Feels like tomorrow tjhe hospital will call and say sorry, it was a mistake. Blood work, red and white cells, platelets, all gone right up. My doc says he is sure it's a relapse but could be CMV or EBV , common after transplant. I know it's a failure. Need your support to be psychologically strong, to stop counting time, to bear this burden with a smile on my face. It will be defeated. Meantime, I don't want it to condition my life one single day more. Does that make sense to anyone? Hugs. Molly

Picnic · « **Reply #294 on:** September 04, 2015, 06:05:16 pm »

Molly,
What a bummer. Most of us have had multiple treatments! I have had 4 until the last one worked.I know what you are feeling ,stay strong , keep healthy and keep fighting.Strength comes from knowing that you have to fight to continue to enjoy your family. Don't give up,ever! I will pray for you. Larry

Katie · « **Reply #295 on:** September 04, 2015, 08:16:06 pm »

So sorry to hear that Molly, but with your history I would wait and see what the viral load is. I do not have any info or knowledge on transplants but I am here for you and know you will succeed. New treatments are coming if this one fails. At least your liver was given some help and a reprieve for awhile. Do you still have the energy and fitness? (that is probably difficult to judge right now with the stress)

Sending you {{{{HUGS}}}} and healing light!

Katie

Katie · « **Reply #296 on:** September 04, 2015, 08:19:20 pm »

Quote from: Bucky on September 03, 2015, 03:01:35 pm

Hello members, I thought that I would check in since it has been several months to let you know what's up. It has been over a year since I finished my treatment and I have learned a few things. I had a MRI the first of the year for cancer screening and recently I had an US for further monitoring. My liver and spleen have both shrunk. My liver is now in the upper limits of normal while my spleen is still a little large. The radiologist pulled up my scans from over a year ago and he said that I had better blood flow and it appeared that the portal hypertension wasn't as bad because the smaller veins in my liver and spleen did not have blood tiring to use them to get around the main veins. I took this as very good news.

Hi Bucky, Good hearing from you and I agree! This sounds like good news. Have you had a viral load check lately? There have been several of us who cleared after being detected at EOT. I can't remember how your relapse happened.

Keep up the fight and good luck to you!

Katie

Bucky · « **Reply #297 on:** September 05, 2015, 11:12:48 am »

Hello Katie,
I fortunately was cured and did not relapse.
I am in the "recovery stage" now and my strength and stamina are still getting better. My gastro contacted me yesterday and we discussed my concerns about continuing with the USs and he said it was still a good tool to use because it was cheap to do compared to an MRI. He said a mass as small as 1 cm would show up on an US and it also illustrates blood flow much better than am MRI because of the doppler capability.
Since I was treated early with DAAs my progress is being studied along with others to help identify clinical improvement or deterioration post treatment. It appears that I am in the improvement group!
Bucky

Katie · « **Reply #298 on:** September 05, 2015, 01:13:56 pm »

Quote from: Bucky on September 05, 2015, 11:12:48 am

Hello Katie,
I fortunately was cured and did not relapse.

I apologize Bucky. I was thinking of someone else! So sorry and so Happy for you. Sounds as if you are moving in a positive direction and wish you all the best!

I need to pay more attention!

Katie

mollythedog · « **Reply #299 on:** September 08, 2015, 04:38:33 am »

Morning friends, Mollythedog Here. Tuesday and must call For my VL today. Still don't understand why, guess there's no because that docors know about. No diabetes. 53 kilos, 5'4", no kidney, cardiac or other problems. Always eaten healthily, stopped drinking alcohol years before I knew about my hepC. Swim and cycled all my life. Transplant went amazingly well, out of hospital within a week. If I didn't do anything wrong why didn't it work? My doc is thinking o retreating with sovaldi daklinza and Riba 24 weeks, don't know why he prefers it to Harvoni. Will it have more side effects this time? Will my poor transplanted liver be up to it? Will it work? I had hcc before the transplant and felt quite well, only had one attack of ascites which went by a drip and never came back. Feel I have to pay for not having suffered with hcv. I didn't know I had it so perhaps that's why. I cried and prayed this morning, woke up crying. It's for my daughter. 23 tears old at Uni, I am her life as she is mine. How will she live without me if this evil virus refuses to go? Sorry everyone, I've nobody who understands except my doc but I can't bother him with my problems of how to cope with this bad news, he has so many other patients. Look forward to some encouragement. Love from Molly (Molly is my dog). Gt1a F4 doc says no cirrosis(?) transplanted 27 Ott 2013, one TX sov/Oly and 400 riba daily for 12 weeks. Eot. Und 12 weeks later relapse.

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