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475555 tn?1469304339

Axed from the Boceprevir trial... but my bloods came back normal!!!

The coordinator of the Boceprevir trial in Manhattan called me this morning with the news - no suprise to me - that my hemoglobin came out too high for the trial, at 16.9. I won't be Tx-ing in New York this summer.

What's really weird is that my transaminases checked in below the ULN. And my platelets are back up above the LLN! Both for the first time in four years! What the heck is goin on???

Could it be this antioxidant cocktail of PPC, ALA, Vitamin E, and Siliphos that I've been doing? Maybe. Unless my immune system has suddenly gotten rejuvenated, which seems unlikely since my skin infections are all still there. It's awfully peculiar. A year ago my ALT was up to 150; now it's down to 42.

Tomorrow they're supposed to tell me what the PCR results were. I'll be dumbfounded if my VL is down. But there doesn't seem to be anything too strange for this mind-boggling infection.

All things considered, it's been a day of good news. I may even be able to get to sleep tonight without my usual double dose of valium.

Mike
19 Responses
1275277 tn?1273181335
Have to say, that is incredible news. Excellent as a matter of fact. If your VL is down, you are on the right path!

Thank you in advance from a straw grasper.
Avatar universal
Hey Mike-
Good news on the numbers, Im sorry about the trial. Do you have time to wait for the drugs to become available or another trial? What stage are you at? I noticed there are a few other trials for both telelprevir and boceprevir in the clinical trials.gov area that just came up depending upon your previous treatment. Good luck- Dave
1113735 tn?1273174430
Hello Mike, that seem like a great , great news to me. You have been doing  something good for yourself, and like somebody said, better doing anything for your health benefit, if you dont have expensive supplements, you can try it with green food, etc. Anyway, you shouldn t be surprised, if your v. load dropped. Keeping fingers crossed for you.
Buy
1113735 tn?1273174430
Also, Mike,
dont forget to tell us about results of your PCR. Good luck!
Avatar universal
good news Mike!
475555 tn?1469304339
Here's what the VL report says:

HCV RNA PCR TAQMAN 2.0     6510000 IU/mL

I guess I've got a high viral load. Six and a half million. Not too good, huh?

Another reason for not rushing into Tx.

Mike
1113735 tn?1273174430
Hi Mike,

Another reason to be sure that viral load has nothing to do with fibrosis, or status of the liver. My Doc. sais, that viral load only represents how much infective you are in fact, and as well that virus is off course there. Dont worry, as long as your AST and ALT are OK, and also GGT. They realy show how your liver is doing, but that is in fact important isnt it?
179856 tn?1333547362
Six million isn't that high really Mike - someone like me with a measly 568,000 couldn't get rid of them as fast as people in the the tens of millions. It just doens't matter too much if you ask me.

AST and ALT don't necessarily reflect how your liver is doing and they can dance around constantly so you need still be on your guard REGARDLESS of what their number is.  You have to WATCH and wait now.

I'm very very sorry about the trial. Hopefully soon they won't be considered trial drugs anymore and having a high hemo like that will be a great thing regardless of it all.
1113735 tn?1273174430
My Doc. went to Vienna Conference for the Study of Liver, and here is the link:

http://www.clinicaloptions.com/Hepatitis/Conference%20Coverage/Vienna%202010/CCO%20Slideset/Highlights.aspx,


might be interesting!
29837 tn?1414534648
My Gastro told me that viral loads can go up or down pretty much daily. Low ALT and AST readings are a good sign of the liver swelling going down. If you can afford to wait, I'm positive that a new drug will come out to circumvent the current problems and sides.

Good luck in your quest. As far as these new warnings such as the one you posted, I go according to what my dad told me years ago. He said "Believe half of what you hear and doubt the other half". Amen

Mag
475555 tn?1469304339
Thank you all for the encouraging words. That VL result sure gave me the blues, but I feel better now. Unfortunately, VL is a factor in the SVR equation, as are age, fibrosis stage, etc. But probably not the decisive factor, which seems to be just plain responsiveness to Tx (some sort of genetic thing, as I understand it).

I feel more motivated than ever to keep up the CAM cocktail, maybe increase dosages, and start talking to my hep MD in Bs As about the idea of doing an Alinia + CAM fibrosis-stabilization experiment. If we asymptomatic F1/F2s could just stop the fibrosis from progressing maybe we could live with the virus. That's what I'd like to see.

The risks of Tx for me are huge, at my age. If I could hold the fibrosis at bay, why poison myself with Tx for twelve months? But it doesn't seem as if the biomed community is interested in pursuing that kind of research. They are being paid large sums of money to develop cures. Cures that for me are almost as dangerous as the virus itself.

Mike
1113735 tn?1273174430
Here is the link for interesting informations about Conference in Viena, April 2010.


http://www.clinicaloptions.com/Hepatitis/Conference%20Coverage/Vienna%202010/CCO%20Slideset/Highlights.aspx
Avatar universal
ahaa , this is good news , with your numbers . i remember you from last year . i have heard numerous good storys about the use of the antioxidants and the supps you mentioned . great news !!  for those who dont want to treat  , or cant there are new and promising things you can , at least do in the meantime .   i was lucky . i killed it with a skillet .  without too much damage .  keep up the good work .    bob  
Avatar universal
thts gr8 bout ya LFTs mike,dunno much bout viral loads n i have no idea if mine was high or low,il have to find tht 1 out but i hope it doesnt mean its harder to get rid of etc.  i hope u can get into another trial.take care
179856 tn?1333547362
Six mil is not that high, certainly not high enough to be discouraged. Remember me with a low VL who almost didn't even get to UND.  You just never know how you are going to make out.

The new drugs will be out and they will change the course of treatment forever. And they are working on SOC free meds just look at that other ad on that was posted the other day that destroys VL like 99% or something.  You have to realize that is what they are aiming for complete annihiliation of the virus with one pill. They'd be gazillionaires!

Dont give up - nobody should ever give up. Look at Andiamo for a perfect example of being cured and Magnum and Susan as examples of determination!!!!!!!!!!!
475555 tn?1469304339
Can you give me the link for that ("just look at that other ad on that was posted the other day that destroys VL like 99% or something.")?

M.
Avatar universal
Hi Mike, Great news on the bloodwork. Keep up the good work, you must be doing something right! I was just curious as to what brand of PPC you use. If you cant post it, send me a message and let me know what brand if you can. Thanks-------cash
476246 tn?1418870914
Congrats on your good results!!!

Sorry you didn't get into the BOC trial. What a shame. But maybe something better lies ahead. Anyway, you know I'm rooting for you!

Marcia
475555 tn?1469304339
I take Phoschol, made by Nutrasal and retailed by Vitacost and many other nutrient/supplement suppliers. Hepatopro is another, equivalent product. These are all purified polyenylphosphatidylcholine (or so they claim). They are made from common soy lecithin, and contain linoleic and linolenic acids (particular omega-6 and omega-3 fatty acids) as well as other things.

They are relatively expensive as supplements go. If you can't spend the money, you can take garden-variety lecithin for a small fraction of the cost and you are getting some polyenylphosphatidylcholine. However, the other lipids in lecithin may compete with the PPC for absorption, thus the idea of purifying the PPC.

Mike
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