oops, i meant for the above question about feeling worse to be attached to this posting string.
hello, i had been seeing an excellent liver doc at ucsf on an annual basis for the last four years (since i discovered i had hcv). she offered to put me in touch with a woman starting a trial last year and as much as i wanted to do it, personal problems interfered.
when i saw her for my annual in august, she said "i know of a trial starting next month, are you interested?" long story short - that's how i got here. i don't know if anyone else has any suggestions. the trial doctors name is luetkemeyer and she and her staff work out of sf general although they are under the ucsf umbrella. madeleine
I was suppose to get in a trial by bristil myers and then they stopped the trial because someone died (see http://www.reuters.com/article/2012/08/23/us-bristolmyers-hepatitis-idUSBRE87M16120120823) now I don't know what to think. I failed the latest treatment a couple months ago. I do not have any symptoms so I will just wait.
Shayne
I'm intrested in how you applied for this trail. What was the entire process? What screening was involved? Do you have to travel? Whatever enlighting material you have about how to get into a trail would be great!
hello folks, i am beginning my fifth day (of 90) on the bristol myers trial of daclatasvir (BMS790052) and TMC435. half of my study group are also on ribavirin with the two above mentioned drugs. there are no placebos. i have had mild joint aches, tolerable headaches and moderate nausea. i expected it to take a while for my body to adjust. a brief background on my past food intake: i am normally a water drinking, organic food eating, exercising person. i hope no one sees this post as a complaint. i am very aware of how fortunate i am to be trying a less difficult drug regimen. i do want to keep you folks up to date if you are interested. thanks to all of you for sharing your stories, it has given me strength and courage. (i live alone and have told no one about my hep C). madeleine
New Updates Guys!!!!
1) "Gilead Announces Early Sustained Virologic Response Rates for GS-7977 Plus Ribavirin"
http://www.gilead.com/pr_1684792
And this as well:
2) Boehringer Ingelheim came out with the new drug combination BI 201335 and BI 207127. Phase II Trials are over, and Phase III Trials are about to begin. Pray for the best!
"The outcome demonstrated that 68% of all participants, including those with the most difficult to treat HCV type genotype-1a non-CC, achieved a viral cure after 28 weeks of treatment. Most significantly, 82% of patients with the most common HCV types in Europe and Asia, i.e. genotypes-1a CC and -1b also achieved a viral cure after 28 weeks of therapy."
http://www.medicalnewstoday.com/articles/244343.php/
Let us know how your trial goes.
on september 18 i will start a trial treatment using bristol myers daclatasvir and tmc435. i am reading the posts of folks who have gone through other types of treatment and come out the other side. thanks for sharing. madeleine
I am 1 year viral free, thank you to THE CHANCE CENTER in St.Pete Fl., a nonprofit org., and also on Board of Directors, 8 years of helping Hep B and C, all geno 1, 2, 3, treatments, to those without insurance,including myself, get the treatment they need with medical assistance...we are totally volunteer doctor included, (Dr. Glamour St.Anthony Hosp., St.Pete Fl.) and the only place to help people get free viral loads, and a great support staff...With the people we see, are those who fill research clinics, We have been waiting for this and can see value of lives over value of making money.As I had gone thru the treatment twice, I can understand the suffering it can stop in new patients. There is no age limit with this disease and see many young lives it can save with the drug issue of younger generation and the prescription drug abuse thats taking such a toll of our children.We need this yesterday. We need it today. And I can only see a rise in cases of this deadly virus..Shame on those who value money more than the suffering of people!!
We need to spread this news. There are about 130–170 million people worldwide living with this virus. Please spread this as much as you can!
Thank you for sharing this link it is very interesting.
I have signed the petition and my immediate family as well
D
figured out how to add more signatures, i was a little bit worried about send the link to family members but was very pleasantly surprised when my son said he sent the link to all of his friends, WOW, brought a tear to my eye
Woah thanks for that...I heard there were that many genotypes but never saw such an extensive list.
Maybe in time with excellent meds we can put an end to ALL of them!!;p
...I am so grateful they have improved the chances SO much for 1's with the current PI's. As much as incivek made me cry, that and Victrelis are truly a miracle..;)
I CANNOT wait to see what is next. I have a bunch of dear friends now that will need those meds and for all the people I don't know too!
I added my name to the petition (because I have untreated HCV and am now thinking of joining this community - then i was going to add my husband because he had HCV and the site was stuck on the facebook friends that I was supposed to add. I can't even get back to the page to add my husband because when I went off the page and opened it up it was still insisting it seems that i add friends from facebook and twitter - like it was mandatory. What gives?
It's interesting but lacking as there are 11 genotypes worldwide
http://www.hepatitis-central.com/hcv/genotype/explained.html
1a - mostly found in North & South America; also common in Australia
1b - mostly found in Europe and Asia.
2a - is the most common genotype 2 in Japan and China.
2b - is the most common genotype 2 in the U.S. and Northern Europe.
2c - the most common genotype 2 in Western and Southern Europe.
3a - highly prevalent here in Australia (40% of cases) and South Asia.
4a - highly prevalent in Egypt
4c - highly prevalent in Central Africa
5a - highly prevalent only in South Africa
6a - restricted to Hong Kong, Macau and Vietnam
7a and 7b - common in Thailand
8a, 8b & 9a - prevalent in Vietnam
10a & 11a - found in Indonesia
That is great...never came across it before. Thanks for sharing it.
When I say rare I should say there seems to be more type 3 in Scotland and England . Obviously there is type one but seems to not be as common as type one is in the U.S . Maybe it's just doctors I've delt with but most scots are type three or more common to have type three of course there is type one . Just thought I'd correct ma self . Good link. What ever the type it's a royal pain in the arse. What don't kill us only makes us stronger . Also makes us better people .
This is a very interesting map of Genotype distribution around the world....
http://www.who.int/vaccine_research/documents/ViralCancer7.pdf
http://clinicaltrials.gov/show/NCT01359644 is the link to one trial. At least they are recruiting for Phase 2 which is open to genotypes 1, 2 and 3 and uses these two drugs plus with or without ribavirin. People should all do well on it.
Genotype 1 is rare in the UK??....interesting, it's the most prevalent here in the US.
Bristol-Myers Squibb is a global BioPharma company headquarterd in NY, USA. The PSI drug was owned by Pharmasett, but was sold to Gilead. Gilead claims more Phase 2 studies need to be confirmed before safely moving onto Phase 3 and collaborating with BMS...the other claim is the whole profit/loss situation in the petitions. Who to believe?!?
The two in combination have had amazing stats...and it's all oral, no INF injections. Hopefully, they will get this to the public sooner or later.
When you say Bristol is this in the u.k? Is there trials ? I'm type 3 but have a good friend type 1 which is rare er in the uk and after a year it's back I'll sign this thanks for the info