Dr. Jill Smith is pretty cool. Lot's of explaining and a whole lot of calming news.
First, the little spider web looking blotches on my chest are called spider nevi (or something like that). There caused by my liver. But, from all the tests so far, my liver seems to be holding it's own...aside from the high enzymes results, all the rest of my blood test seem good.
In a couple of cases they even seem very good. My red blood cell count is very very good. She seemed happy to see that before treatment starts saying that a side effect of therapy is that it may lower my blood count. She said she can usually count on that being a major factor on anyone who starts off even slightly anemic. So I look very good in that department.
My heart sounds good. She can hear the murmur but she doesn't think it'll be any kind of factor in all of this. Heart surgery did me well and if it weren't for all of this I'd be feeling awesome.
Fatigue is the virus......nausea may be from the fatigue.
What else....
The plan:
There's a new research trial starting up beginning Dec. 4th and Doc. thinks I should be in it. Roche has a drug that will be added to go along with Pegylated Interferon and Ribavirin. She said it should increase my chances of clearing the virus. It's not named yet....still has a number.
Hershey will have 7 people in on the study. I could either jump right in to therapy with just Interferon and Riba. or I can go for the study. She said that if it where her she go for the study....I think she's right.
But now I wait for the phone call from her research nurse who has a list of patients that she's calling. I don't know if I'll be one of those seven and to be very honest....my luck in life is usually not that good.lol
If I make the study list I'll go back to Hershey (hopefully very soon) for blood work that will determine if I fall within what they're looking for. Then I'll have the Liver Biopsy. They want to wait to hear about the study before the biopsy because if I make the study the biopsy is paid for through Roche.
I'm hoping for the phone call next week...I hope early next week. Then in all reality this might not get moving until after the New Year. I'm going to push to have it happen sooner if it's at all possible.
With all of this my brain has relaxed a bit even though the bull shit everywhere else in my live is still piling on.
Oh yeah....lol....did I say I kinda have bad luck? lol All of the Christmas shopping is done. I did almost all of it on Amazon.com and one thing from Walmart.com and something else from Kmart. Those are the only 3 places that I've ever used that particular credit card at. The card was never used before.
So last night came a phone call....someone has been charging stuff on the credit card.....hundreds and hundreds of dollars! Yep! Credit Card Number has been hijacked! Son ofabitches!
And as for my sister Debbie....her last message said that her news was that she's engaged. So I called her, got her voice mail and told her I'm happy for her, Congratulations, said that I love her and hung up the phone. thing is that I really meant it.....I won't be calling her back.
So bottom line...My brain is strong again....my emotions in check....I'm back on the saddle and ready to charge this stupid little dragon again....(glad I don't have to use my credit card!lol)
:-)
First, the little spider web looking blotches on my chest are called spider nevi (or something like that). There caused by my liver. But, from all the tests so far, my liver seems to be holding it's own...aside from the high enzymes results, all the rest of my blood test seem good.
In a couple of cases they even seem very good. My red blood cell count is very very good. She seemed happy to see that before treatment starts saying that a side effect of therapy is that it may lower my blood count. She said she can usually count on that being a major factor on anyone who starts off even slightly anemic. So I look very good in that department.
My heart sounds good. She can hear the murmur but she doesn't think it'll be any kind of factor in all of this. Heart surgery did me well and if it weren't for all of this I'd be feeling awesome.
Fatigue is the virus......nausea may be from the fatigue.
What else....
The plan:
There's a new research trial starting up beginning Dec. 4th and Doc. thinks I should be in it. Roche has a drug that will be added to go along with Pegylated Interferon and Ribavirin. She said it should increase my chances of clearing the virus. It's not named yet....still has a number.
Hershey will have 7 people in on the study. I could either jump right in to therapy with just Interferon and Riba. or I can go for the study. She said that if it where her she go for the study....I think she's right.
But now I wait for the phone call from her research nurse who has a list of patients that she's calling. I don't know if I'll be one of those seven and to be very honest....my luck in life is usually not that good.lol
If I make the study list I'll go back to Hershey (hopefully very soon) for blood work that will determine if I fall within what they're looking for. Then I'll have the Liver Biopsy. They want to wait to hear about the study before the biopsy because if I make the study the biopsy is paid for through Roche.
I'm hoping for the phone call next week...I hope early next week. Then in all reality this might not get moving until after the New Year. I'm going to push to have it happen sooner if it's at all possible.
With all of this my brain has relaxed a bit even though the bull shit everywhere else in my live is still piling on.
Oh yeah....lol....did I say I kinda have bad luck? lol All of the Christmas shopping is done. I did almost all of it on Amazon.com and one thing from Walmart.com and something else from Kmart. Those are the only 3 places that I've ever used that particular credit card at. The card was never used before.
So last night came a phone call....someone has been charging stuff on the credit card.....hundreds and hundreds of dollars! Yep! Credit Card Number has been hijacked! Son ofabitches!
And as for my sister Debbie....her last message said that her news was that she's engaged. So I called her, got her voice mail and told her I'm happy for her, Congratulations, said that I love her and hung up the phone. thing is that I really meant it.....I won't be calling her back.
So bottom line...My brain is strong again....my emotions in check....I'm back on the saddle and ready to charge this stupid little dragon again....(glad I don't have to use my credit card!lol)
:-)
5 comments:
Wow! This could all come together really fast, now that it's coming together! Is the new drug a 'protease inhibitor?' I think those are the hot new things. I also think the drug companies give you some time after the proposed start date to enroll, complete all of your blood work, etc. - not everyone starts the same day. This sounds exciting. Glad you're confident about your doctor, that's the most important thing.
I'm in a study with Scherring Plough but I'm not on the study drug, I'm the control arm. Being in a study is great in that you get a much higher standard of care and your odds of SVR increase. The down side is that the sx's are harder as you will be doing 3 drugs instead of 2. Also, if your study is a protease, your chance of the virus mutating is increased. That has been a minor factor in the SP and Vertex trials.
I have so much information to get yet...so many questions that I'm planning to hit the research nurse with!
I believe it's called a Polymerase Inhibitor, or at least I think that's what she called it.
It doesn't have a name yet...it's still a number. I'll have to asked for the number...
What other questions should I be asking?
I read about the study you're in Terry. Your "not on the study drug"? Does that mean you got the placebo? I'm so very new to all of this that it makes me feel totally blind! lol
I also read about the virus mutating (sneaky little shit!) But hopefully the chance of that is low enough that it won't be a factor. My fingers are crossed.
You all have been through all of this stuff already...lend me a hand...what other questions should I be asking?
By the way because of the weather report for tomorrow, Jimmy and I may take off for NY tonight to get closer to the city and we'll just grab a room.
Can't wait to see you guys tomorrow!
I would get a placebo if my study had one. They just tell me I'm not getting the Bocavir(study drug). As far as the study goes, I chose to participate and the computer put me in the control arm. I was disappointed but it turns out I'm an erly responder on SOC so it's OK. There has been a higher rate of viral mutation on the study drug. I guess it's just a chance you take.
I'm Terry posting from M's blog. She doesn't have the Hepsie
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