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judit
Junior Boarder
Posts:212

Any news about Hep C support and info space here?

#7721 3 years ago
Greetings, Jill and Phil,

I'm following up on the idea of a space set aside for folks with Hep C to gather, share information and support. If it were to be within a larger Health/Life changes kind of area, it would be helpful to be able to have separate spaces, as we need to be able to have more than one thread going at one time. (See Hep C at the PhilZone.) I'm well aware that there are other life-changing/life-threatening health situations that deserve equal attention; some folks are dealing with Hep C and Cancer ~ the hits keep on coming.

Could there be one large umbrella section with segments for health problems (diagnoses) as needed? Then there could be any number of threads within each diagnosis. It would make it easy to follow, without having to try to find applicable threads amongst many.

Just a reminder that our need continues. Thanks for your considerations and for carrying on the spirit. You guys are inspiring.
FUCK CANCER!

Peace & Love
The following user(s) said Thank You: Jack Jones
Docpaleo
Junior Boarder
Posts:100
Peace, love & light

Re: Any news about Hep C support and info space here?

#7808 3 years ago
It's not going to happen Judit.

I never got a response from admin on the question and I know they have alot of emails to cover so I'm not surprised that mine or others on the HCV issue is not addressed. We have asked and as far as I can tell have gotten no response. I see none forthcoming.

In addition the PhilZone has not gone down and closed shop as was expected so we still have our forum there.

It seems we have what we have. No more & no less.

I have pretty much stopped posting in OS and most likely will stop posting here as well. I am going to stick with the Hep-C forum on the PhilZone as long as that last.

peace

whitey-x & evie moonflower



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Last Edit: 3 years ago by Docpaleo.
judit
Junior Boarder
Posts:212

Re: Any news about Hep C support and info space here?

#7821 3 years ago
Good morning, whitey,

It's hard to wait til you get your energy and health back! It's been a long road.

The last time I brought this up was the night that Jill and Phil were here chatting. My memory is that Jill said it could happen. She had some concerns which a couple of us responded to and I hope allayed, and I am patient, especially as they are still on the road. I just wanted to bring it up again see if Jill had any news to share.

You and evie have been on an unimaginably rough journey during your successful treatment, whitey. I hope you continue to find things easier and better as the days go by. Sending love to you both.
FUCK CANCER!

Peace & Love
Jack Jones
Junior Boarder
Posts:91

Re: Any news about Hep C support and info space here?

#7825 3 years ago
I just started a new thread before I saw this one. Great news was announced in Germany today, "Quadruple therapy shows 100 percent SVR for HCV patients previously unresponsive to treatment."
www.furthur.net/forum/general-discussion...h-just-reported#7820

whitey-x,
What do you think about the science?
... that one word is "why?"

Music alone may span that space between the finite and the infinite. Edgar Cayce Reading 3659-1
Last Edit: 3 years ago by Jack Jones.
Docpaleo
Junior Boarder
Posts:100
Peace, love & light

Re: Any news about Hep C support and info space here?

#7881 3 years ago
The abstract says only 21 people participated in the study and no reports of a 6 month follow-up as required in the US by the FDA.

There is no 100% Hepatitis-C cure at this time.

Further, these are Phase II trials and abstracts being presented. The drugs they are investigating still have to go through Phase III testing and approval by the FDA.

Last thing of note on this is the combonation therapy if Pegylated Interferon and Ribavirin are so toxic to the body that many folks cannot tolerate the the full standard of care 48 weeks of treatment.

EASL is an annual meeting to present findings over the past year so researchers can move forward with new therapies. Until Peg/Riba combo is surpassed by anti-viral drugs less toxic to the body many of those with HCV refuse to treat. I refused to treat for over ten years until the odds of sustained viral release reached 75% +.

My combo drug therapy was PegInterferon/Ribavirin/Boceprivir. It was a muther to go through, although to be fair not everyone has it as bad as I did with the side effects.

Many of these new therapies hold great promise but we are not there yet.

peace

whitey-x & evie moonflower
Last Edit: 3 years ago by Docpaleo.
judit
Junior Boarder
Posts:212

Re: Any news about Hep C support and info space here?

#7883 3 years ago
This is why I hope there will be a space over here, too, whitey. There's always going to be new information coming up and we need reality checks.
FUCK CANCER!

Peace & Love
Docpaleo
Junior Boarder
Posts:100
Peace, love & light

Re: Any news about Hep C support and info space here?

#7907 3 years ago
Perhaps we should put out a monthly invite on this forum to come and visit us on The PhilZone Hep-C Forum with a link?

But, I really wish we just had a forum here.

I hope you and Greg are BOTH doing well today!

peace

whitey-x & evie moonflower
judit
Junior Boarder
Posts:212

Re: Any news about Hep C support and info space here?

#7908 3 years ago
Great idea, whitey, for as long as there's a Zone. But I think there are also folks who don't like the Zone or haven't felt welcome there who could use a space here. And who better than Phil and Furthur to provide that?
FUCK CANCER!

Peace & Love
jazfish
Junior Boarder
Posts:47

Re: Any news about Hep C support and info space here?

#7910 3 years ago
The drugs are improving every day for the treatment. The treatments are getting more successful at beating this hideous disease. With Phil Lesh's dedication to the Organ Donation Awareness and his past experiences with Hep C, one would think the bandwidth needed to expose the dangers and awareness needed to to educate Pholks to get tested would be a "No Brainer".

Admin,,,, How about a folder?

A life or two might be saved.
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