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How to find trials
After relapsing from Sovaldi and Olysio I am now for the first time having non stop pain in my abdomen.It is making me crazy as I cant relax at all.I don't see my doc for 6 more weeks when he is going to propose the triple therapy for me.Then the battle will start with my insurance company with the rejection after rejection so It could be ages before I can start treatment.I have emailed another doctor I have seen at the University of Penn to see if they are having any trials I might be eligible for.I am scared and would like to get started on something as quick as possible.Can anyone tell me a site that might be able to help me find a trial that a relapser like myself might be eligible for.
Thank You Glen
Thank You Glen
Due to constant itching from my bilirubin being off I have been taking packets of cholestyramine twice a day to try and live with the itching.Just for kicks I googled side effects of cholestyramine and the first one to pop up was stomach pain.I am wondering if this can be the cause of my stomach pain so I am going to scale back to 1 packet a day to see if it eases up.
Thank you everybody -I will let you know if this helps
Thank you everybody -I will let you know if this helps
I agree with nan535, the pain may be unrelated to the end of treatment. I know that is does seem like it has to be the case, but there are so many things that can happen in the abdomen and not all of them are necessary from the same cause. My dad (years ago when he was still living), had an emergency situation occur where his intestine lost the blood flow to it and he had to have a life saving emergency surgery to remove that portion of his intestine that had literally died. Prior to the emergent situation, he had no colon issues and this just came upon him quickly. There are also things like gallbladder, which closely mimic that same pains are the liver, as they are in the same area. Susan400
"After relapsing from Sovaldi and Olysio I am now for the first time having non stop pain in my abdomen.It is making me crazy as I cant relax at all.I don't see my doc for 6 more weeks when he is going to propose the triple therapy for me."
If you are having non-stop pain in your abdomen, you should be seen by a gastroenterologist or hepatologist to see what the source of your pain is. I would not wait six weeks to see your doctor. You may want to go to the emergency room at U Penn and that might be a quicker way "in". Would definitely not go during the holiday weekend.
Hope you get to the bottom of this soon.
Nan
If you are having non-stop pain in your abdomen, you should be seen by a gastroenterologist or hepatologist to see what the source of your pain is. I would not wait six weeks to see your doctor. You may want to go to the emergency room at U Penn and that might be a quicker way "in". Would definitely not go during the holiday weekend.
Hope you get to the bottom of this soon.
Nan
yep..i drove over 3 hrs to get the right doctors and treatment at Mass Gen.no run arounds..great people..
Thanks Deb
As I just wrote to Kim I am trying to get in touch with Dr Makar at the university of Penn which has a huge program and a transplant center.Being the Labor day weekend is making it difficult to get him but hopefully this coming week he can give me the answers I am seeking.
Thank you Glen
As I just wrote to Kim I am trying to get in touch with Dr Makar at the university of Penn which has a huge program and a transplant center.Being the Labor day weekend is making it difficult to get him but hopefully this coming week he can give me the answers I am seeking.
Thank you Glen
Thanks Kim
I am in South Jersey an hour away from the University of Penn which is considered a large institution,also where all liver transplants are performed in the area.I am trying to contact Dr Makar whom I have met with there but being Labor Day weekend I guess I will have to wait for it to end,cant get a hold of him.
Thank You Glen
I am in South Jersey an hour away from the University of Penn which is considered a large institution,also where all liver transplants are performed in the area.I am trying to contact Dr Makar whom I have met with there but being Labor Day weekend I guess I will have to wait for it to end,cant get a hold of him.
Thank You Glen
Glen....sorry....an exclusion with the above trial is "Prior exposure to SOF or other nucleotide analogue HCV NS5B inhibitor or any HCV NS5A inhibitor" so you would not be eligible. :(
This is when the ability to delete or edit a post would be helpful....it's one of the reasons I don't post here often.
This is when the ability to delete or edit a post would be helpful....it's one of the reasons I don't post here often.
Glen, check this out....
Sovaldi and another Gilead drug GS-5816, Phase 3....
http://clinicaltrials.gov/ct2/show/study/NCT02201940?show_locs=Y#locn
Sovaldi and another Gilead drug GS-5816, Phase 3....
http://clinicaltrials.gov/ct2/show/study/NCT02201940?show_locs=Y#locn
As Lynn stated not sure where u live but try Cedar Sinai they have fantastic dr's and they are on the cutting edge of medicine... I am so very sorry to hear your news...my heart goes out to you Glen. There are more Tx's out there for all of us so stay focused and you are going to find it. We are all in this together and to support one another even if thru a simple HVC blog. This site is where we find our strength when we doubt our own. TX's are getting better and shorter now, ur gonna win this.......u take care and God bless you
Deb
Deb
Glen
I can so sense the desperation in your words and am so sorry for what you are going thru. I can only share with you my personal experience for what it's worth. When I was told I had Hep C, I immediately went online to try to find the best possible Drs whom had the most knowledge in eliminating the virus.
Called Mayo Clinic. Live 4 hours away, but decided I had my best shot treating with them. Long story short.....Met with Doc, had all my bloodwork done that morning with all the answers by the late afternoon. Gave my insurance info and said I wanted Tx ASAP. 2 days later the call came and they said will you be home tomorrow morning as the meds are being shipped today. No insurance snafus or fights to get approved. Never even spoke to my insurance co. As they said we handle everything. Started Tx Jan 15, within days of hitting the shelves. Guess the point is when you have a large institution behind you, I do believe that the process is so much easier to navigate then a country doc. Don't know where you live but there are major comprehensive hospitals scattered thru out the US. The ability to travel affords the best care in my opinion when dealing with a formidable disease such as Hep C especially when on the cirrhotic cusp. Every MRI, CT Scan, bloodwork, ect you get the results that day. Even Hep C viral loads.
As a cancer survivor I have always felt that where you treat has everything to do with the eventual outcome. Just my words on paper, and perhaps if a clinical trial is not available right now you may want to find a good institution that has some clout in the industry. It's truly worked in my favor so far and with this virus time is of the essence.
Do hope you get the Tx soon
...Kim
I can so sense the desperation in your words and am so sorry for what you are going thru. I can only share with you my personal experience for what it's worth. When I was told I had Hep C, I immediately went online to try to find the best possible Drs whom had the most knowledge in eliminating the virus.
Called Mayo Clinic. Live 4 hours away, but decided I had my best shot treating with them. Long story short.....Met with Doc, had all my bloodwork done that morning with all the answers by the late afternoon. Gave my insurance info and said I wanted Tx ASAP. 2 days later the call came and they said will you be home tomorrow morning as the meds are being shipped today. No insurance snafus or fights to get approved. Never even spoke to my insurance co. As they said we handle everything. Started Tx Jan 15, within days of hitting the shelves. Guess the point is when you have a large institution behind you, I do believe that the process is so much easier to navigate then a country doc. Don't know where you live but there are major comprehensive hospitals scattered thru out the US. The ability to travel affords the best care in my opinion when dealing with a formidable disease such as Hep C especially when on the cirrhotic cusp. Every MRI, CT Scan, bloodwork, ect you get the results that day. Even Hep C viral loads.
As a cancer survivor I have always felt that where you treat has everything to do with the eventual outcome. Just my words on paper, and perhaps if a clinical trial is not available right now you may want to find a good institution that has some clout in the industry. It's truly worked in my favor so far and with this virus time is of the essence.
Do hope you get the Tx soon
...Kim
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