Author Topic: EOT today. (Read 14141 times)

Rich1957 · « **on:** July 21, 2015, 10:37:39 pm »

Well we can start with a little background. I'm 57 yrs. and just finished my second treatment of sov/rib , 16 wks. this time with 1200 mg of rib. I'm 2b and have been infected for possibly 30 yrs. Tx first time was great 12 weeks , then got the news at 4 months post Tx was double the viral load I started with. Finished Tx July of 14 and again July of 15 . Now starts the wait, First to feel better then for that 24 wk post Tx bloodwork, and the elusive SVR. Hope everyone is as lucky as I to have the opportunity to rid our bodies of this blight. It's made me pay much more attention to my diet and health in general. Best wishes to all.

KimInTheForest · « **Reply #1 on:** July 21, 2015, 11:45:18 pm »

Good luck Fred! Hope your final result gives you the all-clear this time.

kim

frank · « **Reply #2 on:** July 22, 2015, 01:44:43 pm »

8)yea man good luck ,waiting on week 12 test results has anyone ever relapsed at week 12??? please respond

Rich1957 · « **Reply #3 on:** September 08, 2015, 04:30:07 pm »

Well I went to the Dr today. 6week eot. Got the surprise of my life , my viral load is the same as before treatment. 7 mill. Went 16 weeks at undetected and now bam. This is my second treatment in a yr. I'm gen 2 and the Dr said he doesn't know what to do. he said he has never seen this before. I'm at a lost going to talk to another Dr. Anyone else had the same results??? Well best wishes to those that are on the right path , guess I'm going to have to take another detour but I'll get there.

KimInTheForest · « **Reply #4 on:** September 08, 2015, 04:40:10 pm »

Quote from: Rich1957 on September 08, 2015, 04:30:07 pm

Well I went to the Dr today. 6week eot. Got the surprise of my life , my viral load is the same as before treatment. 7 mill. Went 16 weeks at undetected and now bam. This is my second treatment in a yr. I'm gen 2 and the Dr said he doesn't know what to do. he said he has never seen this before. I'm at a lost going to talk to another Dr. Anyone else had the same results??? Well best wishes to those that are on the right path , guess I'm going to have to take another detour but I'll get there.

I am so sorry to hear this Fred. My heart goes out to you. What is your fibrosis score? Is it possible you are F4 (cirrhosis)? That would require longer treatment. I wonder if you can be tested for resistance so that doctors will know for you what next treatment attempt would have the best odds. The good news is that the HCV drug pipeline is really full right now, and new stuff is being approved all the time. I am sure your 3rd try will be successful. But how frustrating to have to go through all that.

best,
kim

terih · « **Reply #5 on:** September 08, 2015, 04:45:06 pm »

I'm so sorry to read about your relapse! I know Sovaldi isn't supposed to create RAV's, I'm getting ready to start my next treatment with Sovaldi/Olysio. So I wonder if there is some other combo for your genotype?

Again, I'm sorry for your relapse, it is crushing news! Teri

slats1056 · « **Reply #6 on:** September 08, 2015, 11:07:11 pm »

Fred, third times a charm Brother, Keep Your spirits up & keep kicking it. Sorry to hear the bad news. As always, good luck & My prayers are with You. Hopefully the Old Boy upstairs is listening in after all I've done , but I won't give up on Him so don't You either.

Rich1957 · « **Reply #7 on:** September 22, 2015, 12:46:15 pm »

Have to go to get my HVC Resistance Profile checked. Don't know what all this entails. Anyone else been there??? What if you are resistant is there anything else?? Thanks for listening.

badbradley · « **Reply #8 on:** September 24, 2015, 12:24:58 pm »

Hi Fred,

Geno type 2 who failed Sof/Rib

1.) Daclatasvir/Sofosbuvir 24wks W or WO Riba who are not eligible to receive IFN.

2.) Sofosbuvir/IFN/Riba 12wks if eligible to receive INF.
http://www.hcvguidelines.org/full-report/retreatment-persons-whom-prior-therapy-has-failed

Adding the INF to Sof/Rib 12wks may be the hot ticket. Yay right? Sorry to hear of your news. Sucks. Stay healthy and prepare for round 3.
Brad

Resistance to sofosbuvir is miniscule and I have read that the resistance variances disappear extremely rapidly, around 4 wks.
I am surprised your Doc is even testing for RAV's really but what do I know

byebyeC · « **Reply #9 on:** September 24, 2015, 04:04:40 pm »

Moderators just posted this: 9/24/15 re: a pan genotype Gilead release

http://forums.hepmag.com/index.php?topic=3379.msg29537#msg29537

mollythedog · « **Reply #10 on:** October 04, 2015, 10:02:23 am »

Hello Brad, what are you up to regarding retreatment? Have you seen your hepatologist yet? I'm waiting to start Sov/Daklinza/Riba, meds ordered should be here by 15th Oct. Went to my doc last Wednesday, enzymes very high, 253/185 and red cells 11.3. That's why he keeps the ribavirin low dose. Have been through a stressful time then found my peace again. Been feeling so tired last few days. Some days I'm all adrenaline and others just wiped out
Also have this sort of empty feeling in my stomach area. Anyway, reading through your posts, you've been very strong and positive and I really hope we get through round 2 and come out winners. This all has a very spiritual significance for me
It's so intimate, who can really understand? Only those who've been there. I'm still working and going to London from here in Italy next month for work. Hope I'll be up to it. I do hope you've at least got an ok on Harvoni, and a start date. By the way, my doc insists I'm not yet in cirrhosis. He explained about the Fibroscan they use, says it's unreliable in his experience a biopsy is a truer teading for fibrosis. Hope he's right, he's no idiot, perhaps the equipment is old or malfunctioning. Typical here in Italy. last year's biopsy showed F1. Take care,

badbradley · « **Reply #11 on:** October 04, 2015, 03:09:07 pm »

Hi Molly, Awesome news your starting treatment soon! Also good about F1 not cirrhosis. I would trust the biopsy over fibroscan numbers too. Nothing is as good as the biopsy yet. Sorry to see your enzyme levels high. Soon to be put in their proper place!!! Glad to hear your finding your way through the relapse ordeal. Up and down was the norm for a time for me but we eventually find our way.
I will be seeing my hepatologist this week. I had bloods drawn Fri.- everything except viral load. We will discuss lab results and future plans. I feel liver damage is progressing. A liver biopsy may be in order in the near future. Insurance covers it so yay! Not looking forward to it but no way around it anymore.
Yes, this certainly is a spiritual journey for me as well. Staying strong and positive has been very challenging for me. Sometimes I don't do as good as I would like to. We will both get through round 2 and we will both be winners this time. It would be nice to start treatment alongside you.
Good luck in London next month. Hope your energy improves. Glad you are treating again and the dragon will be slayed! Looking forward to your start date.
Take care. Brad

mollythedog · « **Reply #12 on:** October 08, 2015, 04:58:05 pm »

Hi Bradley, hi all you other fighters out there,
I'm still waiting for the call from the specialist to pick up my new meds. I'll have lab tests again, been eating red meat for the low red cells, 11.3, preparing for the ribavirin. On the whole, after much prayer and keeping in touch with the best part of me, I'm feeling much calmer. Getting on with things. No symptoms yet, of a bad liver I mean. How about you any news? Can't wait to hear you say you're starting harvoni. Take care..

badbradley · « **Reply #13 on:** October 11, 2015, 09:36:22 pm »

Hi Molly, Good to see your settled and preparing for battle. Waiting for meds is certainly a test of patience. No symptoms of bad liver is a nicer existence. My symptoms seemed to have simmered some lately. Recent lab results looked good. ALT/AST in range. Platelets fair at 150. Everything else normal. No pressing need for VL test until start of treatment. Currently they are appealing so it's back to jumping through hoops for a while. Please post when you get your meds. It is a landmark event these days. Great to hear your doing well. Take care.
Brad

mollythedog · « **Reply #14 on:** October 12, 2015, 11:09:32 am »

Hi Brad, thanks For replying. I go on Wednesday to pick up my new meds. This time I didn't actually wait for them to come, I've stopped panicking. That took some work but something has changed in me, or I have changed my perspective. Your alt/ast are normal that's great! I've never had more than 100 platelets since the transplant. They did warn me of this. I think you can continue to wait for the right treatment without any worries. My alt/ast are high, lowered somewhat since EOT 12 weeks but still in the 150 range. I think the most important thing is to appreciate feeling good and symptom free for as long as it lasts, even though we know we have this awful virus, and face up to whatever presents itself along the way, including side effects and treatment failure. I have every intention of doing all that is required of me to beat this. However, having failed what was supposed to be the miracle cure, I have fewer expectations than the first time round. The lesson I've learned is that we cannot be 100% sure of anything in life, so we might as well just live each day being positive and productive, giving and receiving love. Very spiritual eh

Rich1957 · « **Reply #15 on:** November 17, 2015, 05:21:57 pm »

Well time for an update. It's been a month since I've been on the blog. Changed Dr. and am very happy. After my second failure at txt in 18 months. This Dr. dug a little deeper and found I have geno types 1 & 2. Also found I am F4. Not all good news but gives the Dr. more info to work with. Don't know for sure what the txt is going to be but it gives me hope again. How common is it to have 2 geno types??? does that explain why txt didn't work??? Still have a lot of questions can't wait till my next app. with the Dr. Would like to hear from anyone in the same boat. Thanks and God Bless. Fred

gnatcatcher · « **Reply #16 on:** November 17, 2015, 06:36:40 pm »

Fred, RE: your question, "How common is it to have 2 geno types???" -- I finally found the thread on these forums that addresses that: http://forums.hepmag.com/index.php?topic=3469.0
Excerpt: "It may be that you have more than one HCV genotype at the same time. When this occurs, often the genotype test shows whichever genotype which is more predominate, and sometimes it can switch. Having more than one HCV genotype is not rare, with studies placing it in the 5 to 10% range."
Also, the above post contains a link to a fuller article: http://www.hepmag.com/articles/hepatitis_c_questions_2502_27873.shtml
Excerpt: "There are various ways a person could have more than one hepatitis C genotype:
- Dual infection –This occurs when a person is infected with more than one hep C genotype at the same time. Hemophiliacs who received clotting factors, which are derived from thousands of sources, were at risk for dual infections.
- Co-infection – This happens when someone is exposed from two different sources of hep C within a short time span, and acquires hep C from a second source before the first infection is established.
- Superinfection – Someone whose hepatitis C infection is established, and then they are infected with another genotype.
"There is also something called HCV recombination. In this situation, a person may be co-infected with more than one HCV genotype, and the viruses exchange genetic material."

Here's hoping you hear from some of those 5-10% who have multiple genotypes. May your next Tx be the one that cures you!

Gnatty

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Author Topic: EOT today. (Read 14141 times)