Aa
Decided against the clinical trial
Hi,
I talked to the Nurse in charge of the clinical trial and she said I would have to go all the way over to San Francisco every week for a year. That is way too much. She said the first week I would have to go over twice. I would have to take that day off every week. I can't commit to something that long. And give up my herbs too? She said I could take my 2 herbs to help me sleep and my melatonin but that's all. Spend all my vacation on the road or train? I don't think so. I can't get in the Vertex one anyway. She wants me in the Roche one. It's also a protease inhibitor.
I'd rather just go on regular tx and keep taking a couple herbs to lessen the sxs. There's another I can take for depression. I do not do well with drugs at all. But I can do Jin Shin Jyutsu. Anyway it will give my liver a break, whatever the results. I will talk to the nurse practitioner on Thurs.
Reading a lot of your posts the past week or so has helped me make up my mind. I'm probably at stage 3 now and Dr. Cecil says treat.
I found out from another nurse why they don't start you out on a lower dose. It's what the insurance company wants. They either give you 24 or 48 weeks, having a lower dose messes that up. To make things easier for the insurance company, who cares about quality of life for the patient!
I talked to the Nurse in charge of the clinical trial and she said I would have to go all the way over to San Francisco every week for a year. That is way too much. She said the first week I would have to go over twice. I would have to take that day off every week. I can't commit to something that long. And give up my herbs too? She said I could take my 2 herbs to help me sleep and my melatonin but that's all. Spend all my vacation on the road or train? I don't think so. I can't get in the Vertex one anyway. She wants me in the Roche one. It's also a protease inhibitor.
I'd rather just go on regular tx and keep taking a couple herbs to lessen the sxs. There's another I can take for depression. I do not do well with drugs at all. But I can do Jin Shin Jyutsu. Anyway it will give my liver a break, whatever the results. I will talk to the nurse practitioner on Thurs.
Reading a lot of your posts the past week or so has helped me make up my mind. I'm probably at stage 3 now and Dr. Cecil says treat.
I found out from another nurse why they don't start you out on a lower dose. It's what the insurance company wants. They either give you 24 or 48 weeks, having a lower dose messes that up. To make things easier for the insurance company, who cares about quality of life for the patient!
I've tried herbs before. Melatonin, Valerian, Aloe Juice, various vitamins, Milk Thistle, etc., etc. Every time I tried any of it, it all caused me just as many side effects (including the vitamins) and I would stop taking them. The reason? Because my doctors just did not like it when I was taking something that they were not real familiar with, or, that they did not prescribe. So, I didn't feel like if I was on this particular herb and I was having these sides, that I would have any place to go to help me figure it out. Whenever I take vitamins, I'd get a stomachache. I've tried taking them with food, didn't change it, still stomachache. This happened even with the ones that did not contain iron. Melatonin and Valerian did not really do all that much to help with my sleep problem and I got all sweaty on some of these different herbs. Milk Thistle caused me to get wheezy, aggravating my hay fever/asthma. At least with the interferon/Riba, I had a medical doctor following me, who was familiar with it and knew about the sides, etc. I had one girl bring this herbal tea with all these different roots and stuff in it, that she claimed would cure me of the Hep in drinking it, I thought I would puke. The tea itself had such a strong odor to it. I swear I thought that I could smell that smell seeping out of my pores. Of all these things, the only one that didn't have a lot of sides for me was the aloe juice. Even with that, I had to mix it with other juices to make it drinkable. I didn't do these things on my treatments either. I have a sensitive stomache and taste buds. I've never been able to tolerate anything even remotely spicy, no Mexican type of foods, chili, or anything of that nature. So, with that being said, I've all but given up on herbs. I think it's great for those that choose it. Susan
I don't know what you mean I am critisicing anything but...I figure that a world reknown front line Doctor like Dr. Jacobson doesn't want any of his patients taking any herbs at all - so that thought is good enough for me. And I didn't even bring it up to HIM he brought this subject up to ME. He's no Dr. Cecil - if you look up any study that has been examined on cutting edge theories (medicinal ie: Vertex, course DOSES, genotypes) you will see that he was a pricipal investigator.
It's not meant to sound CRITICAL at all but when a person such as he, who is one of the if not THE leading doctor in this field firmly believes not to take these meds...I just listen to him and do what he says. End of story.
Whether they would make me "feel" better is completely aside the point - I don't care how bad my sides get I just want to do whatever it is to kill this disease and honestly - that is about it.
Plus - I don't see the need to make my liver process MORE things than it needs to while on treatment anyway so for most of us it's a moot point.
It's not meant to sound CRITICAL at all but when a person such as he, who is one of the if not THE leading doctor in this field firmly believes not to take these meds...I just listen to him and do what he says. End of story.
Whether they would make me "feel" better is completely aside the point - I don't care how bad my sides get I just want to do whatever it is to kill this disease and honestly - that is about it.
Plus - I don't see the need to make my liver process MORE things than it needs to while on treatment anyway so for most of us it's a moot point.
I appreciate your concern however, over on the Dr. Zhang website HUNDREDS of his patients have taken those 2 herbs I mentioned with INF/RIB tx and the sides are not nearly so bad. Western doctors are so slow to understand anything about Eastern medicine. So we do need to know which herbs we are talking about. It's not like going down to the health food store and getting some herbs on your own. Dr. Zhang is a hepatologist and an MD and comes from China with extensive professional knowledge of herbs. He has designed these herbal combinations especially for people with hepatitis C. He has helped thousands of patients. You should read his book on hepatitis C. He goes around the country giving lectures. You can email him questions. You can call him on the phone. He's very approachable. He also treats Chrones disease (irritable bowel syndrome and Lymes disease). I have taken his herbs for 3 years now and they are the best.
If I thought they were not superior I would just stay as I am and not treat now and wait 2 more years for Vertex or Roche's FDA approval. But it might be a 4 year wait. I know how much better I feel. You are criticizing something you know NOTHING about.
The Nurse Prac. of the clinical trials said they have room in the Roche trial for a naive tx patient like me but not in the phase II Vertex (they will be signing up patients soon for that one). My name is 10th on the list now and they only need 2 more. I was trying to get in Phase III but they will not start that trial until this one is completely done in a year.
Dr. Cecil says if you are in stage 3 you need tx. 3 years ago my bx said I was between stage 2 and 3. I wrote to Dr. Cecil and tried to call him yesterday to see if there is a Dr. out there that he prefers. But I couldn't get in. Well, I just called and they said he's not there today but he will answer my email in a few more days. He's very busy.
It's not just the clinical trial. Even if I could wait 2 years for Vertex or Roche's FDA approval we still have to take INF/RIB. So I might as well give it a try.
I'm basing my decision on many different factors and not just on the trial. My right thumb is messed up now and I can't do reflexology. I don't want an orthopedist to cut the tendon. I might never be able to do reflexology again. I need both thumbs!
Dr. Cecil says if you are in stage 3 you need tx. 3 years ago my bx said I was between stage 2 and 3. I wrote to Dr. Cecil and tried to call him yesterday to see if there is a Dr. out there that he prefers. But I couldn't get in. Well, I just called and they said he's not there today but he will answer my email in a few more days. He's very busy.
It's not just the clinical trial. Even if I could wait 2 years for Vertex or Roche's FDA approval we still have to take INF/RIB. So I might as well give it a try.
I'm basing my decision on many different factors and not just on the trial. My right thumb is messed up now and I can't do reflexology. I don't want an orthopedist to cut the tendon. I might never be able to do reflexology again. I need both thumbs!
BE CAREFUL WITH THE HERBS...there is no study data to prove or disprove that it won't interfere with the medications that you will be on. If in any way they DO interfere with say the IFN then you will have done this for nothing!
I know that they help you sleep but we are completely advised not to take any herbs during treatment, especially the milk thistle.
As you can see if they don't allow you to take them in a study...then it goes to figure that they CAN play a part in response to the meds.
We had one girl who TRIPLED her liver enzymes taking them and as you know - that is horrible!
At least this way with regular treatment you KNOW you have a great chance of beating this thing. I hope you get the best care possible and that this virus shivers at the thought of how bad you are gonna beat it to death! :)
I know that they help you sleep but we are completely advised not to take any herbs during treatment, especially the milk thistle.
As you can see if they don't allow you to take them in a study...then it goes to figure that they CAN play a part in response to the meds.
We had one girl who TRIPLED her liver enzymes taking them and as you know - that is horrible!
At least this way with regular treatment you KNOW you have a great chance of beating this thing. I hope you get the best care possible and that this virus shivers at the thought of how bad you are gonna beat it to death! :)
Sorry about the feedback you got regarding the trial.
Just to see what difference it might mean in terms of travel, etc, -- you might just want to tell your nurse that you're only interested in the Vertex trial and see what she says. Sometimes, they will shuffle you to whatever trial is filling up slower but that doesn't necessarily mean that another one is filled up. I do understand you don't want to waste vacation days, but the Vertex trial potentially is a lot shorter than doing a year of combo treatment and that is something you might want to factor in as many of us have lost a lot of work on combo treatment.
I was a little puzzled by your statment regarding "they don't start you on a lower dose".
With the current treatment drugs, most leading hepatologists I'm aware of start at full-dose and try to maintain it through treatment. Some, even start at more than full dose-- sometime called double-dosing. This has nothing to do with the insurance companies but more to trying to knock down the virus hard and fast. Studies suggest that faster the virus gets knocked down, the better your chance of being cured.
All the best.
-- Jim
Just to see what difference it might mean in terms of travel, etc, -- you might just want to tell your nurse that you're only interested in the Vertex trial and see what she says. Sometimes, they will shuffle you to whatever trial is filling up slower but that doesn't necessarily mean that another one is filled up. I do understand you don't want to waste vacation days, but the Vertex trial potentially is a lot shorter than doing a year of combo treatment and that is something you might want to factor in as many of us have lost a lot of work on combo treatment.
I was a little puzzled by your statment regarding "they don't start you on a lower dose".
With the current treatment drugs, most leading hepatologists I'm aware of start at full-dose and try to maintain it through treatment. Some, even start at more than full dose-- sometime called double-dosing. This has nothing to do with the insurance companies but more to trying to knock down the virus hard and fast. Studies suggest that faster the virus gets knocked down, the better your chance of being cured.
All the best.
-- Jim
I think she said it was for the Roche PI's trial not the Vertex trial that she got into and decided against in the end.
JM, I believe she is talking about the vertex trial. that is the one she mentioned in another thread. Now she feels regular tx will be better.
I am just putting this thread and the other one together to get above conclusion.
maybe she can clarify better for you
I am just putting this thread and the other one together to get above conclusion.
maybe she can clarify better for you
I feel you made a good decision. Have you treated before and I was wondering about your age? I am a Grandmother also. Why can we not take milk thistle?
Sandy
Sandy
Thanks for all your help and honesty. I have no illusions about the tx. It's not a walk in the park. But it will be worth it.(smile). Two of my friend have now got diabetes and I would like to avoid that if possible.
I woke up in the middle of the night last night worrying about that clinical trial and wondering if I could do it. I wish I could have gotten into a 6-12 weeks one. But there is no way I can do a whole year. Then it was hard to get back to sleep.
I have been leaning in the tx direction lately. You have all helped with all your generous and helpful suggestions about what do to for a skin rash, bald head, and all these different symptoms so I shouldn't have too many surprises.
My girlfriend is looking up all the points to hold when you are on chemo for me. Everyone has been so helpful. And I can still take my trip in May to England for 5 days. YEAH! It will be a blast.
Also, a couple of my friends recently cleared the virus and they are genotype 1, so that gave me hope and courage also. What do I have to lose by the virus?
I knew I was going to do one or the other, either the clinical trial or tx. So here I go. The nurse practitioner is out tomorrow but she will call me on Thurs. and I will set up an appointment.
I have been leaning in the tx direction lately. You have all helped with all your generous and helpful suggestions about what do to for a skin rash, bald head, and all these different symptoms so I shouldn't have too many surprises.
My girlfriend is looking up all the points to hold when you are on chemo for me. Everyone has been so helpful. And I can still take my trip in May to England for 5 days. YEAH! It will be a blast.
Also, a couple of my friends recently cleared the virus and they are genotype 1, so that gave me hope and courage also. What do I have to lose by the virus?
I knew I was going to do one or the other, either the clinical trial or tx. So here I go. The nurse practitioner is out tomorrow but she will call me on Thurs. and I will set up an appointment.
Good to know what you can and cannot do. I took Dr. Zhang herbs for a while they helped at the time. I was fairly run down when I found out I had the virus. I believe they helped to build up my tired immune system.
Tx will be much less stressful without all that travel because some days you will not feel up to it.
sd
Tx will be much less stressful without all that travel because some days you will not feel up to it.
sd
No way could I have hacked all that travel on tx. I have made a few trips over the year and they really take the stuffing out of me and my husband does the driving. I think you are making a wise decision.
Well, we cannot take milk thistle. But Hepa #2 and circulation P are great and so is rovasin (I think that is it for depression). These are Dr. Zhang's herbs at www.hepapro.com His website is: www.sinomedresearch.org If your platelets get low take copamine.
I do much better with herbs than chemicals. Thanks for your good wishes.
I do much better with herbs than chemicals. Thanks for your good wishes.
Hi, I hope you come to some decision that is the best for your particular journey and I wish you the best of luck...anyway, I take some herbs too (this can be a volatile subject, but I just take a few and they do help my symptoms, of course they don't rid of you the dang virus) could you be more specific on what you take? If not, I COMPLETELY understand, I was just wondering when I saw your post...be well...
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