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225275 tn?1276957893

NEED SUPPORT !!!!

WOW !!! I have not been on this forum for atleast 3 years. back in 2007 I started treatment, interf. / ribo., geno type 1. I only stood on for 3 months.My Dr. said that I was a slow responder @ a 2 log drop. Meanwhile I was so gong ho on treatment, had the set backs of anemia, gave me procreit @ it stopped, major hair loss ( have thin hair to begin with ) and that was about all. I was very dissapointed. Now 3 years later, New Dr., They want me to go on treatment again. I just had a liver biopsy. It came back a 1 stage, V.L. @ 2 mil. and all the other tests my Dr. said came back good. I am so scared to go back on treatment. At first I had a blood test before biopsy that set me back almost 700 dollars @ the test came back that I have cirrosis. With the liver biopsy, it came back good results @ grade 1. I am so confused. At first my Dr. has me looking to talk to surgons about possibly putting me on a donors list, to now with results of the biopsy, having me say it is my choice with treatment, but highly recommends it. SHOOT !!! I am so confused !!! The first time going on treatmaent I was like a warrior !! BRING IT ON !! Now I am like a scared lamb !!!! HELP !!! Any thoughts or suggestions ???????
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225275 tn?1276957893
Thank you so much for this info. So, are you going to wait for next new tx to come out ? I figure I have waited this long I might as well go the distance !! You see, WHen I first saw this new Dr., Dr. Dejongh in lady lake fl., She gave me all the nesasserary tests and gave me the fibrosure test too. Oh but forgot about the V.L. test !! So, the tests I did go for ,all came out good but the fibrosure test. It detected that i had cirosis. My dr. had me at dead woman walking !!!! Discussing wills, transplant etc.... Needless to say, I was SH--ing in my pants !!! THen i wanted a liver biopsy @ that came out a 1-2-1, the same as over 3 years ago, and her demeaner changed. She was now like, I can go back on treatment blah, blah, blah !! When I asked about my viral load, she said , oh i don't seem to have it . So I had to just go for it last week. Came back med. @ 2 mil. I used to be 8.6 mil. .But we know that , that fluctuates @ don't really mean a thing. SO now I am like, Hum !!! What should I do, I feel like I am diognosing my own problem and thinking of a plan of attack by myself. Not to reassuring !!!! I will just throw it out there, What would you do in a situation like that ??? Wait for the new drugs or ??????
Helpful - 0
179856 tn?1333547362
Deb I've been around here almost six years so yes you probably do remember me - good Debs are good to find right?  ;)

I love NY but have to agree the snow is just dreadful. Fortunately I moved to the CT coast (right on the water) so I can pretend I live in FL in the summertime at least!  But I'm still Nygirl - some things you can't shake out of us right?

Be blessed Deb you have time so take your time and enjoy your life in the meantime!!!!!!
Helpful - 0
Avatar universal
I had a similar experience in 2006, only went 10 months of TX as first doctor cut Riba, and current doctor wanted to give me a chance on full TX dosage since I initially was showing signs of achieving log drop.

However, mid-way through the roller coaster anemia ride of increasing Procrit and Riba, until Procrit was as high as they dared to go, my VL leveled out and began increasing.  In the end, after 12 wks at full TX dosage, I got pulled.

I too just had my 6 month check with my doctor and he too mentioned that despite talk of a possible release of the new PI's this year, it really is looking like it will instead most certainly occur next year.  We even discussed which might be the more likely one to through into the cocktail should I decide to give TX another go once they are out.

From what I understood approval is pretty much a given, what is being worked out is combination therapy recommendations and pricing point of meds to keep them affordable enough so that insurance coverage and other options will be likely to cover them.

We also discussed the new Bristol med, BMS,790052, where in a phase 1 trial, infected patients saw their viral load drop by more than 99.9% within 24 hours. The reduction was sustained for 120 hours.  Phase II reports released at recent EASL conference showed that seven out of eight patients who got the highest dose of the drug had undetectable levels of the virus.

So even better news of victory is around the corner it would seem.

For EASL info on Bristol med see:

http://www.natap.org/2010/HCV/032610_00.htm

Other info on BMS-790052 can be found at:

http://hepatitiscnewdrugs.blogspot.com/2010/04/bms-790052-bristol-compound-potent.html

http://clinicaltrials.gov/ct2/show/NCT00874770

http://www.hivandhepatitis.com/2010_conference/easl/docs/0430_2010_a.html
Helpful - 0
1225178 tn?1318980604
As big as Ocala is, it seems like you should be able to find a good doctor closer than 5 hours away. Gainsville is a college town... surely there's somebody closer to you. I wouldn't waste my time or money on a doctor who will only see you once. You need somebody who is as invested in your recovery as you are.

Honestly... if I can find a good doctor in SC, you can there.

FYI .. I lived in Tampa and Orlando area for 16 years and now drive 301 when I go to Ft Myers to see my sister... which is why I know about your area.
Helpful - 0
225275 tn?1276957893
Thank you so much, I am going to take all of your adice as it seems to be what i was feeling from the beginning with this Dr. Your spot on there " SISTA " I to am fron N.Y. moved out here 6 years ago for the simple life @ no snow. I love the outdoors and I have a horse. I lived a few places in fl. before settling down in central florida. I retiered my horse in Ocala, so moved right near him. I love it up there. It does not ;look like south florida at all. It reminds me of upstate N.Y. with alittle palm trees and moss growing of the trees like old florida. It is beautiful !! Antway, I feel like I remember you ? Have you been on this thread for a long time ? Deb
Helpful - 0
179856 tn?1333547362
Deb two days ago (I think) i posted a new thread on docs to use 3x treatment for 90% something like that - find the article and read it. Print it out and give it to that doc (obviously he's way behind the times).  Hopefully by next year those new drugs will be coming out - they raise the success rate in non-responders and relapsers greatly and the duration of treatment is much shorter.  We've had several members in here who failed prior treatments yet added these drugs and have succeeded during the trial phases of the meds.

I agree if I was only stage 1 I would live a liver healthy lifestyle as best as I could and I"d wait at least to see if / when these are approved and do them.

Also you can put telepravir and then bocepravir into the medhelp search feature on the right hand side and zillions of threads will come up.

I'd definitely send them to this doctor though so he doesn't do the same thing to another patient! Then find someone who is in the loop if you can and go from there LATER.

Good luck, Other Deb
Helpful - 0
225275 tn?1276957893
Thank you all so very much for such important information !!!!!! I have been out of the loop for so long. I used to follow this forum like it was my job. Should have never stopped. I remember all of the hope 3 years ago when everybody was discussing the new drugs coming out. I did not know that it is going to be soon. When I asked my doctor if there was anything new that came out or is coming out, she said no, this is still the way to go on trying to cure hep.C. So I did not even second guess her since she , if anyone, should know. MISTAKE !!!!! I just moved from middle florida to central florida, so I do not feel that the doctors are as advanced up state florida then down south. I do have an appt. to see Dr. Eugene Shiff's associate on June 24th. might have to go with him even though he is 5 hours away now. This is my life we are talking about, so th drive will be worth it. I had seen Dr. Shiff 3 years ago and he only does one time appt.s. No follow ups. I know because I tried to see him again. So I wonder , how would I get into a program for the new tx or DOES ANYONE KNOW WHEN IT IS COMMING OUT ???????  Love you guys for all being here when we need each other !!!!! Debbie
Helpful - 0
Avatar universal
Might want to talk with another doctor as well. Stage 1, and suggesting treatment with the new drugs right around the corner sounds awfully odd, unless you have other contributing factors that made them want to jump on it.

Heck, my Hepatologist told me the other day that in the absence of any complicating factors, she is advising both stage 1 and 2 patients to wait.

Good luck.
Helpful - 0
Avatar universal
I would wait as cando suggested. You have early fibrosis and boceprevir or telaprevir will give you the best chance of success. I am sure you would like to make the next tx the last one if possible.
Dave
Helpful - 0
Avatar universal
Hi, being your only stage one if it was me i would wait for the new PI's coming out soon as you have plenty of time. sense you have did regular SOC with no luck the odds are not good doing the same thing again..

I also had no luck my first tx then got in a trial with one of the PI's and now i'm cured, talk with your doctor about this.............. Best to you.

Cando
Helpful - 0
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