Re: Clinical Trial for my daughter/help Betty

[Guest guest]

OMG

That's where I go! Dr Sukowski and Sherrilyn. And yes dear Marie the coordinator is an angel. They will treat you like gold. They know their stuff. It's right at Greenspring and 83 the first concourse by the chinese place. Your daughter will be in excellent hands, I lost count what week im in maybe 15? I didn't respond last year so doing the 48/maybe 72 weeks. I scammed the receptionist into not going back till May as my tx's have been extremely doable. I have however set the record for rash again at Hopkins! Good Luck n maybe we'll meet at a visit. Pam

[ ] Clinical Trial for my daughter/help Betty

Hello all,

I applied for a clinical trial for my daughter, that will be with the new medication added to the pegintron/ribavirin tx. They want to see her tomorrow, she is a good candidate...young, biopsy is good, she is in good health and is genotype 1. If all goes well she will start tx soon and if she responds as well as I did she may only have to do the tx for 12 to 24 weeks. Will let you all know more as I find out more. I am really excited that all her meds and labs and visits are covered. I honestly couldn't afford to pay for her tx while I am currently paying for mine.

Question for Betty or any other lander's out there. They are not doing the study at the Hopkins downtown, it will be at the Falls Road site in Lutherville. Betty is that the same place you called GreenSpring?

Thanks everyone for your support, it's really what keeps me going.

Cheryl

[Guest guest]

Holy This is going to be a great experience for the 3 of you. Obviously you all live fairly close to each other!! Pam, how are you handling the rash?? Truthfully, I only got the extreme dry and itchy skin - no rash.Gloria

OMG

That's where I go! Dr Sukowski and Sherrilyn. And yes dear Marie the coordinator is an angel. They will treat you like gold. They know their stuff. It's right at Greenspring and 83 the first concourse by the chinese place. Your daughter will be in excellent hands, I lost count what week im in maybe 15? I didn't respond last year so doing the 48/maybe 72 weeks. I scammed the receptionist into not going back till May as my tx's have been extremely doable. I have however set the record for rash again at Hopkins! Good Luck n maybe we'll meet at a visit. Pam

[ ] Clinical Trial for my daughter/help Betty

Hello all,

I applied for a clinical trial for my daughter, that will be with the new medication added to the pegintron/ribavirin tx. They want to see her tomorrow, she is a good candidate...young, biopsy is good, she is in good health and is genotype 1. If all goes well she will start tx soon and if she responds as well as I did she may only have to do the tx for 12 to 24 weeks. Will let you all know more as I find out more. I am really excited that all her meds and labs and visits are covered. I honestly couldn't afford to pay for her tx while I am currently paying for mine.

Question for Betty or any other lander's out there. They are not doing the study at the Hopkins downtown, it will be at the Falls Road site in Lutherville. Betty is that the same place you called GreenSpring?

Thanks everyone for your support, it's really what keeps me going.

Cheryl

[Guest guest]

I guess I'll just have to wait and see what is up with the time thing. We won't

see the new doc untill april first. I did a search on the new doctor and he has

an excellent background and is a hepatologist, supposed to be one of the best.

Did you share the article on insurance coverage? I went into a panic because

even with insurance treatment is going to be very hard on us. I sure wish this

country would do right by its people, I belive health care is a right.

, Theresa Gottlieb <theresagottlieb@...> wrote:

>

> Diane,

>

> I have also heard about a possible shorter time but it's always coming from

> a Gastro or a GP.... I have spoken with the company making one of the new

> drugs and the time frame is 24 weeks minimum. IF you are testing

> undetectable at 4 weeks, 8 weeks AND 12 weeks the time drops from 48 weeks

> to 24. Right now, because only minimal information has come out on the new

> drugs, (there are 2 of them that are similar) a lot of information is being

> mis-construed by doctors who don't have all the information. The education

> part on these drugs is going to be rolling out soon but hasn't rolled out

> yet. So at this point the doctors are reading parts of articles and not

> only confusing the two drugs but also not understanding the whole concept.

> It will be closer to the release date of the drugs before the doctors have

> been trained on these new beasts! Til then all sorts of info will be coming

> from their mouths that may or may not be correct! Just sayin... they are

> busy and they tend to skim thru the materials and not read everything...

>

> Hugs,

> Teri

>

> On Thu, Feb 24, 2011 at 8:24 AM, dianedellicarpini <dellcar9@...> wrote:

>

> >

> >

> > This is the second time I have heard a possible shorter time for treatment.

> > When we went to the doctors I mentioned the twenty four weeks with new drugs

> > and she said maybe a lot less time then that. Any one know if shorter time

> > is now being recomended if you clear at the four week point?

> >

> >

> > >

> > > Cheryl,

> > > Â Just know that I am thinking of you and your daughter. Have faith that

> > she is

> > > going to be an early responder like her mom. Where you are going is a

> > very safe

> > > environment also and i think free parking too .Maybe you will meet Pam

> > there one

> > > day too. best of Luck today, Betty

> > > ________________________________

> > > From: Gloria <gadamscan@>

> > >

> > > Sent: Wed, February 23, 2011 10:13:04 PM

> > > Subject: Re: [ ] Clinical Trial for my daughter/help Betty

> > >

> > > Â

> > > Cheryl

> > >

> > > You know that we are all waiting with bated breath for the good news!!!Â

> > She is

> > > such a good candidate and especially for the shortened period... If

> > she's got

> > > the stuff her mothers is made of, then she will have no problem.

> > >

> > > Please, let us know tomorrow!! I'll probably be just getting out of bed

> > here in

> > > the west and your daughter will be just getting back from the appointment

> > - so

> > > you know I'm waiting.

> > >

> > > Luv Gloria

> > >

> > >

> > >

> > >

> > > ________________________________

> > >

> > > Â

> > > Hello all,

> > > I applied for a clinical trial for my daughter, that will be with the new

> >

> > > medication added to the pegintron/ribavirin tx. They want to see her

> > tomorrow,

> > > she is a good candidate...young, biopsy is good, she is in good health

> > and is

> > > genotype 1. If all goes well she will start tx soon and if she responds

> > as well

> > > as I did she may only have to do the tx for 12 to 24 weeks. Will let

> > you all

> > > know more as I find out more. I am really excited that all her meds and

> > labs

> > > and visits are covered. I honestly couldn't afford to pay for her tx

> > while I am

> > > currently paying for mine.Â

> > >

> > >

> > > Question for Betty or any other lander's out there. They are not

> > doing the

> > > study at the Hopkins downtown, it will be at the Falls Road site in

> > > Lutherville. Betty is that the same place you called GreenSpring?Â

> > >

> > >

> > > Thanks everyone for your support, it's really what keeps me going.

> > >

> > > Cheryl

> > >

> >

> >

> >

>

[Guest guest]

Diane,Yes, the insurance coverage article came from me...  got it from a hep c site on Facebook today.  I agree, medical coverage should be a right for all citizens of this country and it shouldn't cost us half our salary either.  Finding a hepatologist is a great thing...  I have a wonderful one and til today I can call him for about anything and he will drop what he is doing and pick up the phone to talk to me.  I have called him a few times about things that have come up on this forum even that we needed answers for and he was so happy to help.  There is nothing better than having a great doctor to go thru this kind of treatment with.  It makes it so much easier.  You can relax and know he is driving the car and you're in the back seat for the ride.  

Training for the doctors on the new drugs will start probably in the next month or so..  They will be totally up to speed before they are released.  Hugs,Teri

On Thu, Feb 24, 2011 at 2:22 PM, dianedellicarpini <dellcar9@...> wrote:

 

I guess I'll just have to wait and see what is up with the time thing. We won't see the new doc untill april first. I did a search on the new doctor and he has an excellent background and is a hepatologist, supposed to be one of the best. Did you share the article on insurance coverage? I went into a panic because even with insurance treatment is going to be very hard on us. I sure wish this country would do right by its people, I belive health care is a right.

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[Guest guest]



Hey Gloria,

Ya the rash is fuggly..My hands look like they've been burned ,that's the interferon and my body is covered in half dollar size red dry patches. I can't even shave my legs anymore. I use the bag balm Trudy suggested and prescription cream on the hands, I really don't care as long as tx works. I just did my shot and I really should figure out what week..durrr tired but been an easy ride again.

I think it's pretty cool the idea of meeting up with Betty,Cheryl and her daughter. I can't even fathom the thought of my child doing tx. Hopkins will treat her like their own kid.

Pam

[ ] Clinical Trial for my daughter/help Betty

Hello all,

I applied for a clinical trial for my daughter, that will be with the new medication added to the pegintron/ribavirin tx. They want to see her tomorrow, she is a good candidate...young, biopsy is good, she is in good health and is genotype 1. If all goes well she will start tx soon and if she responds as well as I did she may only have to do the tx for 12 to 24 weeks. Will let you all know more as I find out more. I am really excited that all her meds and labs and visits are covered. I honestly couldn't afford to pay for her tx while I am currently paying for mine.

Question for Betty or any other lander's out there. They are not doing the study at the Hopkins downtown, it will be at the Falls Road site in Lutherville. Betty is that the same place you called GreenSpring?

Thanks everyone for your support, it's really what keeps me going.

Cheryl

[Guest guest]

I started treatment the first Friday in August..  Since it was nice outside still I would sit outside with the neighbors in their backyard when I felt up to it... Problem with that... noseeum's  you know those little bitty bugs that you can't see but they eat you alive...  So beyond dry skin and rashes I was itching these stupid bug bites.  To the point that they would bleed.  And because my immune system was compromised they would get infected and not heal.  I swear I couldn't shave my legs the entire time I was on treatment.. It took 6 months for those bug bites to heal... right thru the winter.. in time for warm weather and more bug bites!  Ugh.  

Hugs,TeriOn Fri, Feb 25, 2011 at 8:43 PM, pam miller <pammango@...> wrote:

 



Hey Gloria,

Ya the rash is fuggly..My hands look like they've been burned ,that's the interferon and my body is covered in half dollar size red dry patches. I can't even shave my legs anymore. I use the bag balm Trudy suggested and prescription cream on the hands, I really don't care as long as tx works. I just did my shot and I really should figure out what week..durrr  tired but been an easy ride again.

I think it's pretty cool the idea of meeting up with Betty,Cheryl and her daughter. I can't even fathom the thought of my child doing tx. Hopkins will treat her like their own kid.

Pam

 

[ ] Clinical Trial for my daughter/help Betty

 

Hello all,

I applied for a clinical trial for my daughter, that will be with the new medication added to the pegintron/ribavirin tx.  They want to see her tomorrow, she is a good candidate...young, biopsy is good, she is in good health and is genotype 1.  If all goes well she will start tx soon and if she responds as well as I did she may only have to do the tx for 12 to 24 weeks.  Will let you all know more as I find out more.  I am really excited that all her meds and labs and visits are covered.  I honestly couldn't afford to pay for her tx while I am currently paying for mine. 

 

Question for Betty or any other lander's out there.  They are not doing the study at the Hopkins downtown, it will be at the Falls Road site in Lutherville.  Betty is that the same place you called GreenSpring? 

 

Thanks everyone for your support, it's really what keeps me going.

 

Cheryl

[Guest guest]

PamYes, we do anything that would help with the dye skin and the rashes!! LOL I didn't need to shave my legs. I'm one of those woman that doesn't grow much hair; but, my fingernails rival any of the fake ones. Oh, also it would be very difficult to see hair on my legs and now even the pits have stopped growing.You know, I would give it all up if I had to, just to have a good head of hair. Mine is so baby fine and not a lot of it. My son had more hair at 18 months than I did, I swear. AND there is absolutely no body. Ho HumWell, I also think that it would be sooo neat to pop across the border and meet Steve and Debbie face-to-face. But, now Steve is

getting ready to work up in Alaska and Debbie is getting ready for tx. Ahh once my head has come back a bit more, I'll get the papers so that I can cross and at least visit with Debbie. But, not until the spring for sure.Gloria

Hey Gloria,

Ya the rash is fuggly..My hands look like they've been burned ,that's the interferon and my body is covered in half dollar size red dry patches. I can't even shave my legs anymore. I use the bag balm Trudy suggested and prescription cream on the hands, I really don't care as long as tx works. I just did my shot and I really should figure out what week..durrr tired but been an easy ride again.

I think it's pretty cool the idea of meeting up with Betty,Cheryl and her daughter. I can't even fathom the thought of my child doing tx. Hopkins will treat her like their own kid.

Pam

[ ] Clinical Trial for my daughter/help Betty

Hello all,

I applied for a clinical trial for my daughter, that will be with the new medication added to the pegintron/ribavirin tx. They want to see her tomorrow, she is a good candidate...young, biopsy is good, she is in good health and is genotype 1. If all goes well she will start tx soon and if she responds as well as I did she may only have to do the tx for 12 to 24 weeks. Will let you all know more as I find out more. I am really excited that all her meds and labs and visits are covered. I honestly couldn't afford to pay for her tx while I am currently paying for mine.

Question for Betty or any other lander's out there. They are not doing the study at the Hopkins downtown, it will be at the Falls Road site in Lutherville. Betty is that the same place you called GreenSpring?

Thanks everyone for your support, it's really what keeps me going.

Cheryl