Coverage of Digestive Disease Week--5/20--5/26 2006article - by Ira Jacobson

[Mister beagle bailey]

The Digestive Disease Week held in Ca. the week of 5/20-5/26 2006 (DDW2006)

The articles Ira Jacobson co- written are on the web site:

HIV AND HEPATITIS.COM

Alot of good reading.

Beagle

[goldyn]

im so thankful your biopsy went really well,as you seem to be in good spirits I Pray that the weekend will fly by for you,and your worries be light until you find out something on monday....

                          Blessings

                              angie

[amirtracy]

Good luck to you mike. I know you'll be fine.

[couchpotato]

So glad to hear the bx was a "walk in the park". Always thought mine was too but some people seem to have a tougher time of it. You sure you should be messing with your tach dose? I don't know Mike, docs might take exception to you taking things into your own hands. That being said, I'm happy you are sounding more like yourself and have at least this behind you. Take 'er cool through the weekend and rest up for Monday.

Be well
Mattie

[can-do-man]

Glad you posted and all works out well. needle 18 inches long? That right there would have put me out. I hope your able to rest easier this weekend. Can't even imagine the stress you and your family has been going through. Hoping you the best going forward. You deserve it.

[mikesimon]

I had the biopsy and it went easy. My surgeon, a noted liver pathologist and I will look at the slides Monday and determine how to proceed. I suspect the blast of steroid but FK (Prograf) dose adjustment may be an option. I upped my FK dose today figuring it could do no harm and might do some good. I always like to play doctor and with me as a patient I have no legal exposure. Those ultra sound guided biopsies are a walk in the park. They are nothing at all like the bedside biopies when the doctor comes to your bed with a tray with three needles on it, the largest being 18 inches long. Now that's an eye opener, believe me! The other 2 are for anesthesia but the big one hits pay dirt - and gets there through the rib cage. This one was nothing. All my best to all of you who havd been so wonderful to me. Thank you all. Mike

[strator]

Hi Mike - Your insightful comment

[mikesimon]

I am going for my biopsy right now and should be back late afternoon. Thanks for all your support. Really, this is probably not a big deal - I mean it can get fixed easily, I think. Mike

[honey11]

I second what NYgirl says and will be checking in late this afternoon to see how you are doing..

[NYgirl]

We're waiting.....it's going to be a long day but I  just know you did fINE and so I am not even going to be thinking or worrying. There is just no need. I am sure! SURE you hear me SURE!

(All of the best prayers/thoughts are with you anyways :)

[goldyn]

Yes everything turned out just fine she is doing great raising her grandchildren once in a while she has a little episode and has to go into the hospital,but everyday she appreciates the ten extra years God gave her and she is still pluggin along just fine......

[honey11]

Mike,,with the prayers and wishes here,,,lots of people are on your side so I have a good feeling about this!
This is nerve wracking to say the least but I can see everyone is pulling together here for support and we have Willing and Tnhep in the building to answer lots of questions.  Mike,,,I just know everything will be fine! (((hugs)))

Angie,,,how is your friend doing now,,,the one that had the transplant.  Sounds like all turned out ok!

Susan,,,I can honestly say it is really nice to see you here today.  I was getting worried since you had been gone for so long and truly am sorry.  I hope there is no hard feelings and this will find you doing well!  :)

[Tallblonde]

I'm so sorry to hear that you're facing another formidable challenge.  Please know that my thoughts and prayers are with you.

Sending you a great big cyberhug.

Susan

[jmjm530]

Long time no see. Wondering if you went ahead with your Fibroscan and/or consulted with Afdhal and how it all went?

Lots of good info on Digestive Week 06 being posted if you haven't seen it already.

BTW I'm currently 12 weeks post treatment and was non-detectible at six-weeks post.

Based on the treatment and post-tx experience, my inclination is still not to treat unless you have at least moderate or preferably significant liver damage. While I have no regrets treating, I definitely feel like I've aged 10 years.

Of course, many points of view here and we all have to make our own decisions. As far as "watch and wait" -- I think you set an excellent example with your frequent check-ups, biopsies and possibly a Fibroscan.

Hope this finds you well.

-- Jim

[Algernon]

Just want to say that I appreciate your eloquence in talking about pain--the pain of self, the pain of other.  

Luck, the force, God, the universe, and everything--be with you.

[Mister beagle bailey]

Hey Mike, I'm pulling for you and your in my prays.  Any word yet on the blood works you were waiting for?  What you wrote about pain was well said.  We all have bad days here on the forum and the tx is not gentle on any of us, and you my friend have had more then you share.

God Speed,

Beagle

[Tallblonde]

Hi Jim,

First, let me congratulate you on your 3-month SVR.  That's wonderful, wonderful news.  

Well, I did travel to Boston a couple of weeks ago for my Fibroscan, and guess what happened?  The machine broke down the day before my visit and they forgot to call me to cancel the appointment!  Dr. A. had to pick up a part at last week's DDW conference from some French doctor to fix it.  They're bringing me back to Boston next month for the procedure, so that's cool.

I had a viral load test in April and it came back as 180 IU/mL! My liver enzymes were also in the normal range for the first time since I was diagnosed.  Needless to say, I was very encouraged by these results.  Dr. A. actually told me that he would recommend a 12-week course of standard treatment in my case, due to the extremely low VL.  But I'm going to continue avoiding the interferon/ribavirin route as long as I can.

I still feel guilty sometimes that I'm apparently blessed with a mild case of HCV.  It grieves me to see others go through so much suffering.  But the buzz about Vertex and now this Alinia drug, is very exciting.  I think the future looks much brighter for so many of us who are in a holding pattern, or for those who have relapsed or didn't respond to standard treatment.

Well Jim, all my best to you.  I truly hope you'll have complete peace of mind and a fully recovered body and spirit this year.  

Take care,
Susan

[jmjm530]

Susan said:  The machine broke down the day before my (cross country) visit and they forgot to call me to cancel the appointment!
------------------------------------------------------

Don't you hate when that happens. LOL. Sorry, couldn't resist.  I'm sure it wasn't funny at the time. At all. Afdahl has a great reputation, but sometimes those big city teaching hospitals are run like the motor vehicle bureau with things falling through the cracks.

I understand Dr. A's point of view on treating since you're I assume a geno 2 or 3. (I doubt if he'd recommend same if you were a geno 1) But I certainly understand yours as well. Rifleman, btw, has recently SVR'd on the 12-week short course treatment using I believer Peg Intron, which I'm guessing Afdahl uses.

BTW I haven't had my 12 week viral load results back yet, but I did have the blood drawn today. However, being viral neg at week 6 post tx give me a lot of confidence. In other words, the sweat won't start flowing until a couple of days before results come in :)

Try and stop back and let us know how the Fibroscan goes.
-------------

DD, Susan says "(Dr. Afdhal) told me that he would recommend a 12-week course of standard treatment in my case, due to the extremely low VL."

Interesting statement as I believe isn't Afdahl's affiliated with the Win-R trial that implies viral load isn't a pre-tx predictor? Maybe I'm wrong here.

[Tallblonde]

No, actually I'm a Genotype 1a.  Perhaps Dr. A. wasn't fully clear on that when he made his comment (after all, I'm not his patient). It did strike me as rather odd that he'd recommended only 12 weeks.  I didn't explore it further because I dismissed it almost immediately as something I wouldn't even consider.  If I'm going to do the standard treatment, I'm not going to cut corners, that's for sure.

[Forseegood]

hey, that's a good job that youre holding up so well! and lest we forget, we're both are on a good supplementation/diet regimen, which might account for something? who knows how much....still and all, so glad you have such great labs...I actually had some good labs too but I'm still waiting on a few things, see how these trials go...anyway, great news! Let us know how you find that contraption overall...

[jmjm530]

That's very interesting, especially if he wasn't confused. If you see him again after they fix the machine, you might ask. As you probably know, in Europe they're doing 24 weeks for those with low viral loads and non-detec at week 4. Maybe he feels your viral load is so low that your immune system just needs a little kick give the virus the knockout punch. Personally, I feel less is more when it comes to treatment, even if the odds of clearing are incrementally decreased. My concern on treating long and hard isn't so much the treatment itself, but the potential for long-lasting or permanent side effects, possibly caused by a disruption of the immune system. Double Dose discusses this a lot, and while I pooh-poohed him in the beginning, now that I'm finished treating, I think he might have a very good point.

-- Jim

[jmjm530]

Forsee says: "and (LEST WE FORGET), we're both are on a good supplementation/diet regimen.."
-------------------------------
Even with my short term memory loss, not sure that is possible. LOL.

But seriously, glad you two nutrition freaks are doing so well. Speaking of which, I'll be heading to the health food store tomorrow. I want to try something called Tree Tea Oil? for my skin problems -- actually mentioned by my derm. Also, Roobios tea soaks have been used for many years in S.A. to treat skin problems.

[goldyn]

Im so sorry to hearyou going through this ,I have a friend of the family that had a liver transplant about 10 yrs ago she went into rejection about a year ago turned yellow, they did a biopsy and come to find out she had the runs and the rejection  meds were going clear through her,hopefully something quick and easy is just your problem to.
                              Your in my thoughts and Prayers

                                        angie

[couchpotato]

Oh hell Mike, that is such upsetting news! I was sure hoping for things to turn around on their own without alot of turmoil coming into play. I'm so sorry you are in this position, the stress on you and Karen (if I remember correctly) must be almost intolerable. ALMOST! But this I know, my friend, you are incredibly strong and resilient and you will get over this. It is another one of those crappy bumps in our lives that are faced and then dealt with. Please, as much as you have to be in "the here and now", remember too, to keep an eye down the road and into the future. This too shall pass and sunnier days will be yours.

We'll be thinking of you
Mattie

[Tallblonde]

Foreseegood,

Good to "see" you.  I'll keep my fingers crossed that you get great lab results.

Of course I contend that our "regimens" have a lot to do with our success, so far, in keeping the virus at bay.  I really wish more people would take a closer look at supplements.  I don't believe it's just random luck that my condition has improved instead of worsened in the three years since I was diagnosed.  But I know I'm preaching to the choir in your case!

Jim,

I don't know anything about Tree Tea Oil, but it sounds interesting.  Now, in the case of Rooibus, I should buy stock in that stuff.  Trader Joe's has a good one that I've been enjoying lately.

I will indeed press Dr. A futher about his comment when I see him next month.  I'd also like to get his viewpoint on this diahhea drug.  I'm actually very tempted to give that one a try!  

Susan