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In need of advice- no health insurance- mom newly diagnosed- Clinical Trials??
Hi- today is my first day here. So many questions. My mom was recently diagnosed - geno 1, stage 3 fibrosis. She is 64 and only known risk factor was a blood transfusion she had as an infant- if that's where she got this she's had it all her life and not known.
I am wondering if someone can tell me the name of this study that is being talked about in this thread by Renee, Willy, and many others. I THINK I've found it on clinical trials and it says they are recruiting some in our area- the study number i see is NCT01701401 - is that the one everyone is talking about??What is the best way to try to get into a study- tell her doctor or email the contact person listed with that study on the clinical trials sight?
. We are beyond frightened and confused- she got a phone call from her doctor explaining the stage 3 biopsy results and recommending the triple therapy with incivek. A quick phone call though was not enough time for her to come up with questions and understand what we are getting into here. In addition to being so scared about the side effects she has NO health insurance. My second question is..Has anyone here gotten through treatment without any health insurance??She is supposed to meet with the nurse at the gastro/hepatologist's office to discuss charity care and drug company assistance for the actual drugs but it seems like with all the side effects and health problems it could cause (possible need for Procrit, etc...) it might be disastrous for her to undertake the triple therapy tx with no insurance. maybe she should wait till next year when she gets on medicare? Does medicare pay for these drugs?? I feel so lost and have no idea who to ask. I am thinking this study would be the way to go- no interferon or incivek side effects and it all appears to be paid for. She feels absolutely fine- should she wait for a study or the new sofosbuvir to actually come out, or at least wait till she's 65 and on medicare before undertaking treatment? Any answers/ thoughts would be so very appreciated.thanks
I am wondering if someone can tell me the name of this study that is being talked about in this thread by Renee, Willy, and many others. I THINK I've found it on clinical trials and it says they are recruiting some in our area- the study number i see is NCT01701401 - is that the one everyone is talking about??What is the best way to try to get into a study- tell her doctor or email the contact person listed with that study on the clinical trials sight?
. We are beyond frightened and confused- she got a phone call from her doctor explaining the stage 3 biopsy results and recommending the triple therapy with incivek. A quick phone call though was not enough time for her to come up with questions and understand what we are getting into here. In addition to being so scared about the side effects she has NO health insurance. My second question is..Has anyone here gotten through treatment without any health insurance??She is supposed to meet with the nurse at the gastro/hepatologist's office to discuss charity care and drug company assistance for the actual drugs but it seems like with all the side effects and health problems it could cause (possible need for Procrit, etc...) it might be disastrous for her to undertake the triple therapy tx with no insurance. maybe she should wait till next year when she gets on medicare? Does medicare pay for these drugs?? I feel so lost and have no idea who to ask. I am thinking this study would be the way to go- no interferon or incivek side effects and it all appears to be paid for. She feels absolutely fine- should she wait for a study or the new sofosbuvir to actually come out, or at least wait till she's 65 and on medicare before undertaking treatment? Any answers/ thoughts would be so very appreciated.thanks
Best Answer
Correction to above post:
I stated: "I did treatment for 48 months and I did very well. "
I meant to state: "I did treatment for 48 weeks and I did very well."
(Thanks, to my forum friend who pointed that out to me.)
I stated: "I did treatment for 48 months and I did very well. "
I meant to state: "I did treatment for 48 weeks and I did very well."
(Thanks, to my forum friend who pointed that out to me.)
"I seriously doubt that given your mothers age that she could tolerate Triple therapy. "
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Her mother is 64. She is not 94. I am 67 (I was 65 years and 10 months when I started treatment of Interferon, Ribavirin, and Incivek). I did treatment for 48 months and I did very well. I am now SVR and feeling better than I have in 20 years. Of course I had some side effects with treatment, but nothing that would have ever made me think of stopping treatment. I would do triple med treatment again if necessary. (I know you cannot do it twice. I am just making the point that I would go through it again if I had to.) There are many, many on the forum who are in their 60s, even some in their 70s, who have successfully treated with Triple Med Treatment. We did treatment and most of us attained SVR. Plus, we are doing fine post treatment.
At 67, I am now out working in the garden, doing some landscaping, construction a walkway, doing major deep cleaning and redecorating in the house, hiking, walking, volunteering at several organizations, up and about on my feet all day long every day of the week, and feeling as good as I felt when I was in my forties (except my knees are not quite as good). I never get tired now and I am full of tons of energy and pep. Like I said, I feel better than I have felt in 20 years.
My point is, 64 is not too old to treat, and treatment is a heck of a lot better than getting a bunch of serious extrahepatic manifestations and/or ESLD. At Stage 3 one does not want to wait. One wants to treat before one gets Cirrhosis (at which point the SVR rates decrease considerably and one increases one's chance for developing Hepatocellular Carcinoma).
I have heard nothing about Incivek being taken off the market and I think that rumor is an unfounded rumor.
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Her mother is 64. She is not 94. I am 67 (I was 65 years and 10 months when I started treatment of Interferon, Ribavirin, and Incivek). I did treatment for 48 months and I did very well. I am now SVR and feeling better than I have in 20 years. Of course I had some side effects with treatment, but nothing that would have ever made me think of stopping treatment. I would do triple med treatment again if necessary. (I know you cannot do it twice. I am just making the point that I would go through it again if I had to.) There are many, many on the forum who are in their 60s, even some in their 70s, who have successfully treated with Triple Med Treatment. We did treatment and most of us attained SVR. Plus, we are doing fine post treatment.
At 67, I am now out working in the garden, doing some landscaping, construction a walkway, doing major deep cleaning and redecorating in the house, hiking, walking, volunteering at several organizations, up and about on my feet all day long every day of the week, and feeling as good as I felt when I was in my forties (except my knees are not quite as good). I never get tired now and I am full of tons of energy and pep. Like I said, I feel better than I have felt in 20 years.
My point is, 64 is not too old to treat, and treatment is a heck of a lot better than getting a bunch of serious extrahepatic manifestations and/or ESLD. At Stage 3 one does not want to wait. One wants to treat before one gets Cirrhosis (at which point the SVR rates decrease considerably and one increases one's chance for developing Hepatocellular Carcinoma).
I have heard nothing about Incivek being taken off the market and I think that rumor is an unfounded rumor.
I think what is missing here is that you can advance from stage 3 to 4 and
develop additional health problems with age. Having Cirrhosis comes with
additional health issues too. I'm no expert on this subject by far....but I have learned that ESLD should be avoided at all costs. I treated at stage 2 and didn't hesitate. Not everyone has a horrible outcome to treating with triple.
People having problems with treatment post for help. There are 1000s who
didn't need to post for help. Yes - triple treatment isn't easy. But waiting is not always an option and in my opinion (which we all should be able to express) at stage 3 - your pushing the envelope waiting for better treatments.
I made it though triple with little problems and benefited from reading the do
and not do....like the posts in this thread. I treated my Hepatitis C with Incivek, Interferon and Ribavirin.....beats advancing to cirrhosis and having to deal with that in addition to having Hepatitis C. Not everyone has the choice to wait for treatment or even search out trials. Stage 3 is past the recommended stage to treat. You should not wait past stage 2 to get treatment. I now don't have a threat of advancing to cirrhosis, don't worry about Hepatitis C anymore and have triple treatment to thank for that. Happy
I chose to treat and not wait for something better to come along. That is my opinion.
develop additional health problems with age. Having Cirrhosis comes with
additional health issues too. I'm no expert on this subject by far....but I have learned that ESLD should be avoided at all costs. I treated at stage 2 and didn't hesitate. Not everyone has a horrible outcome to treating with triple.
People having problems with treatment post for help. There are 1000s who
didn't need to post for help. Yes - triple treatment isn't easy. But waiting is not always an option and in my opinion (which we all should be able to express) at stage 3 - your pushing the envelope waiting for better treatments.
I made it though triple with little problems and benefited from reading the do
and not do....like the posts in this thread. I treated my Hepatitis C with Incivek, Interferon and Ribavirin.....beats advancing to cirrhosis and having to deal with that in addition to having Hepatitis C. Not everyone has the choice to wait for treatment or even search out trials. Stage 3 is past the recommended stage to treat. You should not wait past stage 2 to get treatment. I now don't have a threat of advancing to cirrhosis, don't worry about Hepatitis C anymore and have triple treatment to thank for that. Happy
I chose to treat and not wait for something better to come along. That is my opinion.
I forgot the doctor that recommended it could be more harm than benefit for my husband to tx with triple therapy was also Everson
May I point out that this is a forum. We are all entitled to our opinons. 'That is my Opinion" Mine may not reflect those of others, nor yours mine.
Now let me point out that my opinions are based on facts.
Yes I do know that there have been people successfully over 64 treated. Here is the first link, It should be used cautiously......please refer to page 3, http://pi.vrtx.com/files/canadapm_telaprevir_en.pdf
This second link is in regards to the "Sure as heck beats ESLD don't you think???" My husband died from ESLD doctors considered giving it to him while he was still compensated barely. They agreed it would do more harm then benefits. Note the article state may boost .....with serious side effects a risk .
http://www.hepmag.com/articles/victrelis_incivek_cirrhosis_2501_22291.shtml
Sorry I could not find the link to the article that it could be pulled off the market. This one is over a year old.....
http://www.bostonglobe.com/business/2012/12/20/vertex-adds-black-box-warning-label-after-least-two-deaths-from-hepatitis-drug-combination-using-its-incivek-treatment/07QQFrYwdrB2I3JwNqHrxK/story.html
First of all I never said someone should wait to treat HCV. I would not recommend to anyone to jump into such a treatment as this. She should be informed of the possible options available. If a person is leading a liver healthy life and is St 3.....it is quite possible to wait for newer drugs to be on the market. As you state cirrohotics successfully treat with incivik. Then even if this lady was to go to stage 4 she would still be able to treat with much gentler drugs once approved. The newer drugs are being tested much more on cirrohotics than incivik (if you like I can send that link as well)With better results and less side effects if any. Come on really is this being debated.....SOC works and does not in many cases and we all know that INF is poison and those that could tx without it would and should.
I am sorry if you disagree. I do not make flippant remarks where someone's life is concerned. I do my homework. I read. I ask my doc a lot of questions. Since that doc is Dr.G Everson I trust what he tells me.
Now let me point out that my opinions are based on facts.
Yes I do know that there have been people successfully over 64 treated. Here is the first link, It should be used cautiously......please refer to page 3, http://pi.vrtx.com/files/canadapm_telaprevir_en.pdf
This second link is in regards to the "Sure as heck beats ESLD don't you think???" My husband died from ESLD doctors considered giving it to him while he was still compensated barely. They agreed it would do more harm then benefits. Note the article state may boost .....with serious side effects a risk .
http://www.hepmag.com/articles/victrelis_incivek_cirrhosis_2501_22291.shtml
Sorry I could not find the link to the article that it could be pulled off the market. This one is over a year old.....
http://www.bostonglobe.com/business/2012/12/20/vertex-adds-black-box-warning-label-after-least-two-deaths-from-hepatitis-drug-combination-using-its-incivek-treatment/07QQFrYwdrB2I3JwNqHrxK/story.html
First of all I never said someone should wait to treat HCV. I would not recommend to anyone to jump into such a treatment as this. She should be informed of the possible options available. If a person is leading a liver healthy life and is St 3.....it is quite possible to wait for newer drugs to be on the market. As you state cirrohotics successfully treat with incivik. Then even if this lady was to go to stage 4 she would still be able to treat with much gentler drugs once approved. The newer drugs are being tested much more on cirrohotics than incivik (if you like I can send that link as well)With better results and less side effects if any. Come on really is this being debated.....SOC works and does not in many cases and we all know that INF is poison and those that could tx without it would and should.
I am sorry if you disagree. I do not make flippant remarks where someone's life is concerned. I do my homework. I read. I ask my doc a lot of questions. Since that doc is Dr.G Everson I trust what he tells me.
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give you lists of trials and how to access them. The "discoverHepC.com" site
just appeared on Television. They are looking for participants. It might
be in your area. Also, it sounds like your mother has been referred to a doctor and I would see what kind of assistance she can obtain. You might be surprised at the assistance now being offered. I don't know about the Medicare and I'm sure someone on the forum as that knowledge to confirm if it would be covered or not.
Best to you and your mother