Thanks Ckncali,

I just started a thread for the Merck trial.  Great idea !!!

SuziQ

Hi SuziQ,

It sounds like you were very lucky to get yourself on the Merck trial Especially living in a rural area of Texas. Best of luck on your trial. Perhaps you could start a new thread for your Merck trial and maybe other folks on the same trial will post there too. Congratulations on the UND!

Thank you Malcolm for the clarification. I did labs today and my jewel of an NP emailed me an hour ago and my alts are down to 39 a. Maybe the rise was from whatever was going on with my gut.

I seem to having major 1 freakout a week post tx about all kinds of random thoughts.

I'll get the vl Monday or Tuesday and report faithfully back.

Thank you again, I feel better now. This forum and the wonderful caring people on it is a life saver for me.

Hi Kellie,

I wouldn't worry about an ALT of 47. I don't think a rise from 33 to 47 is significant. My last ALT was 63.

Re the Lonestar results.  We already had the interim results in May, 2013 and only a total of 100 patients were trialled in the 6 arms.  Ion-3 took over from Lonestar, and that's why I said it was 'old-hat'. I want to see some interim Ion-3 results, not go over what we already know. It wasn't meant as a comment on the Sofos/Ledip combo! Cheers.

Kellie wrote:

---

PS. Malcolm - Is it normal for my AST to be so high? I know you said in the past that yours are higher then average and it's normal.

AST - 33

ALT - 47

---

Thank you Sandy for your wise input and support - I am a bit worried. What I meant to ask Malcolm was about my ALT level. It's gone up from 33 to 47 in 5 weeks and I haven't been the energy I had early on after eot. Along with the continuing vertigo and now this gastrointestinal issue, joint pain etc.

My ALT levels historically over the years infected was about 47 also, give or take 6 pts or so.

I was looking at RH's post yesterday and started thinking.......  I emailed my NP last night and we'll do a VL today. I'll post as soon as I know.

I know I'm still clearing the meds - just worried. Now I see that Malcolm says the Lonestar trials are "old hat"....ugh.....too much for me...

Easy for me to say I can wait til the end of the year to start checking....

kellie,

sorry to hear about the colitis. during tx there's always a new twist in the road to conquer. i guess the same w/ the 1st 3 months post tx. just think of how well you'll be quite soon.

your #'s look quite nice to me. they say we need to be patient and wait till full svr. recently my liver enzymes stabilized to w/in normal range but my iron saturation & ferretin levels are way off track. i know exactly how you feel waiting for those perfect scores. patience is a virtue.

sandy,ucbgal

Hi Chkncali,

Read your story about finding a clinical trial.  I was so lucky that I found a study center on my first try--HOWEVER--I had been looking and looking for a study center and trial I could qualify for.  Many had an upper age limit and I was 78 when I started looking.  Here in rural Texas there weren't as many options as in Sunny Calif.  I do miss living out there.  Got as far as screening for a Gilead trial and they did a free biopsy and I have cirrhosis. So it was no go.  The coordinator kept looking for a trial for me and I got this Merck trial.  She brought us in at midnight on the first day of availability to do screening because there were so few slots.  Only the study centers knew about the trial. I think it is really important to get on the list at a study center and get all your medical records in so you are ready to go if a trial comes up.  I feel extremely lucky.  Just got my week 8 results Monday--still UND. 

Soon, I hope, these new meds will be standard treatment for everyone.  Should be a lot of trials out there as the drug companies are vying for FDA approval-- and the money.

SuziQ 

Hi Kellie,

Re your AST.  My lab uses a normal range of 10-40 U/L and my AST was 35 on August 28th.  First normal reading since 1985.

The ALT range is 5-40 and mine is still up a bit, but as a cirrhotic, I don't mind. Cheers.

Hi Kellie,

I did the ION3 trial at Medical Associates Research group (MARG) in San Diego. I also applied for ION3 at Scripps at La Jolla but they filled up and I could not get in. I emailed Gilead about the trial and they sent me a list of contact information for five or six places doing the trial in San Diego and L.A. but by the time I got the list from them the trial had closed.

When I first read about ION3 in early May of this year I started searching for the trial and called hospitals and research centers in the area and asked if they were doing the trial. I happened to see a brief post on another forum about MARG and found them on the internet and called and asked if they were doing ION3 and within about a week I was in the trial. MARG only does trials so I think that is why it was easier to get on with them than it was with Scripps or UCSD. I also tried with UCSD but was told back in May that they would not have any trial openings till December. The ION3 trial only allowed a two week window for accepting trial applicants. Scripps told me they did not even have time to post on their website that they were doing the trial. 

Anyway, I was very lucky to get in but I also spent days on the internet trying to locate a place that was doing the trial And happened to call the right place at the right time.

I hope you are feeling better. If you ever get something like that again try Arsenicum, it is really a great remedy for the type of symptoms that you had.

Thanks for the Happy SVR wishes.

Thanks Ckncali for the tip - I used nux vomica 30c when it started. Needless to say - no workie.....I had a few cups of passion flower camomile tea also, but what was going on was no match for that. I see you're in my neck of the woods.

TJ's told me that the salad I ate was not made at the glass onion plant. So who knows? Maybe too much stress from the exams, greasy spoons, detoxing from this, god awful, but I'm so grateful to have had it, tx.

Thanks for the empathy - question? where did you do the ion-3 trial at. UCSD?  Those were already filled when I asked the doc last March.

I'm so happy for your results. Happy SVR for you!

Yes, they did fill up quickly, lucky lucky you and I'm a firm believer that everything happens for a reason in this universe. No mistakes.

Great tip on the arsenicum, I think I already have it in my medicine bag!

Hi Kellie,

So sorry to hear about the colitis. perhaps it is a food poisoning from the salad.

You could try Homeopathic Arsenicum 30c for food poisoning symptoms. it is very safe and can be very effective for diarrhea and abdominal pain. You can get it at any health food store like Jimbos or Sprouts.

Hopefully you will be feeling better very soon.

I remembered an herb that I used to take when my stomach got upset, and started taking it again yesterday- Slippery Elm. It seems to be soothing my gastrointestinal tract.

I know that the antibiotics might be kicking in too.

Here are a few labs from my er visit - I see from this it's taking a while to rebound. No VL yet - I may just wait until the first of the year 12 wk eot labs to see the results.

I'm not going to worry about it with the advent of the results from the Lonestar trials.  Happy Day everyone!

PS. Malcolm - Is it normal for my AST to be so high? I know you said in the past that yours are higher then average and it's normal.

AST - 33

ALT - 47

WBC- 3.6

RBC - 3.90

PLATELETS - 185

NEUTROPHILS - 74.2

LYMPHOCYTES - 176.7

BILIRUBIN - .4

Hi Matt,

I'm keeping the diet pretty light right now. Keifer and yogurt, with additional probiotics.  I have the chi kung exercises I'll start this a.m. This should strengthen my immune system along with the Vit d and B12.

I'm thinking this may have to do with the Trader Joes salad recall. I ate one the previous day. I'm checking with Trader Joe's and Glass Onion Catering to see if who makes this particular salad for TJ's. thank you for your supporting words. It's so hard for my fair weather friends to understand what I'm going through. They think I'm just a flake now. My mom is about the only one who talks to me now. Thank God for moms.

Hey Kellie

Sorry to read about you major discomfort, sounds like your body is re-adjusting to post Meds 

Hope your can find the proper foods that can help your intestinal issues, but like Malcolm said it will not effect your SVR so look forward to feeling better soon.

Matt

Thank you, he walked himself in and was happy to go if that makes sense. I have my other baby still, she is following my husband like he was the best thing since cake. She is a cuddle monster, I'm happy we have her to keep us occupied. x

Thank you Lisa for your kind words. I want to say I'm sorry you had to say goodbye to your friend. It's always so very hard to lose our "little clowns".

I hope you see happier days soon.

Aww doesn't sound too much fun, wishing you a speedy recovery!

@ Mallani, thank you so much for the reassurance. Advice from you is like having a personal doc. Gracias!

@ Brady, whhaaaaaaaaa! Thank you for the encouraging words. I don't know how much longer my husband can hang. He's changed too with this treatment.

I've got tons of probiotics at my disposal in the fridge. I think I will go on a yogurt/keifer diet for the next week or two. I've got some Chi Kung exercises I'll start doing again too. I'll try and stay positive. whhhhaaaaa. We'll maybe I can get down to my pre baby weight of 115. I'm at 122 now. That's down from 144 at the beginning of tx.

thank you friends

Hi Kellie,

'Colitis' is a pretty vague diagnosis and the fact you're being treated with both an antibiotic and antifungal means it's pretty non-specific. The contrast CT has excluded any other causes for abdominal pain, so it should settle down.

Post-Rx problems are a nuisance, but don't beat yourself up about them. They settle down, and you chances of SVR are not affected. You'll soon be celebrating. Cheers.

Big bummer Kellie! I can attest to the fact that colitis hurts and hurts bad! When I read the treatment, Cipro and Flagyl, my first thought was that they treat exposure to Anthrax the same way!! What are you into? LOL! I know side effects from Cipro are low but it can cause diarrhea and abdominal cramps. Like you need more of that! Be sure you concentrate on keeping your intestinal bacteria levels active or you'll continue to experience issues. Lots of good active yogurt cultures should do the trick. You've come a long way, don't let this ruin your great outlook for the future. You knew that it would take a period of recovery to kick that poison out of your system and so it is. I'm sure your husband understands that there would be things to deal with through your recovery as well. I'm sure you're talking to him about it and I bet he has assured you that he'll be there for you through this as well. Right? I know he wants you feeling better, we all want you to feel better and you will. Hold on to the successes made thus far and keep your thoughts positive! Now get to the store and buy a case of your favorite yogurt! xo B

So last Friday night I start getting this really severe abdominal cramping. I mean this is a 10 on the scale of 1-10 for pain. I wait for it to pass. Nope  - it just sits there. Finally at 0330 I wake my husband and we go to the er.

After 8 hours, an abdominal, contrast CT scan,  and heavy pain meds,

they tell me it's colitis.

They sent me home with cipro and flagyl for a week.

Now folks, I've never had this before; I eat like a monk; all I can do is chalk it up to post sx

I'm really getting tired of these sx.

Before treatment I was really sx free. I'm beginning to regret this and think I should have waited for an easier treatment. My poor husband has been through just as much as me. When will this stop???

I also think I won't achieve svr because of all this new stuff happening............ Frustrated and bummed