Inspiration and Hope

[Magnum]

I haven't posted for a while. Briefly, I am a 4 treatments non-responder. Today, I spent a good amount of time with the renowned Hepatologist Dr. Robert Gish. Judging by my 2005 biopsy of Grade 2/3 Fibrosis, he said it would be 20-30 years before I would possibly go into Cirrhosis. He assured me that 80% of people with Hep C go to their graves “with it”, as opposed to “from it”.

The 20-30 year estimated period in my case, was judged by a scale he uses after many studies, as to when I contracted Hep C and through this year. I asked him regarding the VX-950 treatment. He said I could easily wait two more years until my next biopsy in 2009.

I also asked him when he felt the Vertex VX-950 trials would be over and the drug would be released publically. He said 2009. So, in essence, this may give a lot of you hope as to the mechanics of the slow progression of the disease.

There is one thing that he's keeping an eye on. Low platelets count. He has scheduled an in-depth liver scan. At any rate, I walked into his office expecting the worst, and left with a smile and much relief. Naturally, he will keep an eye on my condition, as there may be unknown changes that would accelerate the path to Cirrhosis.

One last thing. I told him I have a state of Nevada Medical Marijuana Card and I take two hits nightly to sleep, as I have insomnia and average 5 hrs. per night. He said three tests have shown that marijuana can accelerate Hepatitis C, but that no definitive tests have been made as to the amount of marijuana on a daily basis, that would accelerate it. To play it safe, he said I should cease the use and he will prescribe a litany of various sleeping aids and assured me he would "put me to sleep". (I hope he wasn't talking permanently).

So my friends, there you have it. I'm sure there are enough of you in the same boat as I, and now have the words of one of the leading Hepatologists in the country... and in my words, we will all be victorious!

Magnum

[GoofyDad]

IIRC, Gish took the position of defending wait-n-watch in a debate segment with another top shelf liverhead on one of the Hep sites. His program seems to be one of caution in deciding whether to treat, then go after it very agressively if you decide to go.

I'm of the thought that marginal cases (say stage 2) should maybe be treated tenatively. SOC for 4 weeks then see if there's a high probability of success with VL test. That approach does carry a significant emotional cost though.    

How are you pal? Keeping a good count of those beans?

[frijole]

It is good to see you posting.  This is much more positive than you have posted in the past.  I am wondering if these doctos are backing off with their treatment lately.  I think your 4 attempts factors in heavily.   Otherwise I bet he would say treat ASAP.

frijole

[debnevada]

Gish's group has one in Reno too. You gotta love it though; potential vacation spots help us heppers in Nevada get some top shelf treatment.

[mikesimon]

I am happy that you've got a positive outlook. Good luck, Mike

[GoofyDad]

I'm envious...The dude almost gave me my peg shot then and there in his office :)

Hope your GF has you erupting like Chernobyll - or however you spell it.

A satelite clinic in vegas, huh? Is it the shows, the golf, the food, or the cards?

[meki]

LMAO --- Well - I'm thinking it wouldn't take much for me to find the hubby in the dark... ROFLMAO!

All I have to do is say "Honey... whatchu doin?" and he's right there.... *snicker*

All without the glow.

Rock on Magnum - there is always hope -in everything we do in life...

Hugs to you!

Meki

[Magnum]

Well now. I was very nervous because I misread the readings to be the other way around. In other words, stage 3/2 instead of 2/3. I believe he would have immediately had me do treatment if I was stage 3/2. I could be wrong.

Based on the fact that I had my first surgery (and transfusion) in 1962, he based his thoughts on "what if" I contracted it in 1962, and had it over 40 years. However, let me add that I had 12 other surgeries since then, with only three having given my own blood (which I suggest everyone does for any and all surgeries).

As for glowing on stage without lights, hmmm, an interesting thought FlGuy. I will give that some consideration. Yes, us Nevadans do shine a little brighter in the dark than the rest of you...

Magnum

[FlGuy]

Having a radioactive person walking around Nevada is nothing new.  If I recall, you're a performer?  Can save a little energy on the spotlights, just glow internally.

[debnevada]

Boys,
It is weird isn't it.....they were so anxious to get me started on tx as an acute that I had an appt. four days after my first email to Gish. There was no discussion of anything like "waiting" but I think it is because the SVR for acutes, if discovered, is quite high. But i wasn't asked to have a biopsy and I wasn't asked to consider waiting.

Deb

[FlGuy]

Interesting coincidences in this thread.  Both of you treated by Gish. One acute, or at least recent, and the other a tx veteran.  One should treat, the other not. I often sit back and become appreciative that there are docs out there and have the capacity and experienece to put all this confusing and sometimes conflicting stuff together.

[pigeonca]

I don't understand how sleeping pills are any less hepatotoxic than MJ - suspect there's a bit of the old Puritan in many doctors.  Not that pot is benign, just no more dangerous than a lot of sedatives. Personally, I use it and find it helps a lot.

[GrandmaA]

Thanks for sharing. He's my doctor too. I see him Aug. 1st. Thanks for the information. That's great news and good news for you too.

Your girl friend can find you in the dark without the nuclear test - that's very funny. We go by feel.
smile. LOL

GrandmaA

[Magnum]

Only that he would NOT have treated me with my liver being Grade 2/3 Fibrosis. He has a whole different take on treatment and transplants than your typical Gastroenterologist. By the way, the Nevada Highway Patrol is using that word as a DUI tester. You have to say it correctly three times within five seconds or they will whisk you to jail.

But seriously, He is not one to quickly treat if there is no "pressing" need to do so. In my case, he said (pending the liver technetium sulfur colloid scan, which I believe is done with some nuclear injection) treatment is not necessary. Well, after the nuclear test, at least my girlfriend will be able to find me in the dark easily.

Magnum

[debnevada]

He's my doc too. Although we might not agree on all issues, i know how good he is from a technical point of view; I'm very glad you left in a good frame of mind.  Great news.

[FlGuy]

It's good to hear your news and that you are feeling some relief from what he said.  Gish was apparently not the 'near death experience with Infergen' doc.  Did he have an opinion about that aspect of your past treatment, that is the wisdom of Infergen in your case?

[stacyb321]

Thank you for the encouragement!!!  I go next month for my bx.... and so hope i am able to wait for the new drugs to come out in 2009?  Thank you for this inspiring post!!