The Gist of it.

[mik1970]

Hi, my first post here , this it not totally about hep c. I have hep c , found out about it around 2003.  I now have full medical insurance and I am trying to get on Harvoni and I have been approved for it. Just one catch I just found out that I
have a malignant  Gist tumor. The thing is that it was 4cm in 2010 and it has not
grown to this date. The GI dept. sent a request off to the insurance co. and told
them that it is in the advanced state ( a NP sent it in). Ok so I am in perfect health
and in fact the tumor is not in that state , just the opposite.
Gi sent me to general surgery , I was told that the Dr. will not operate on it because
it's too vascular and I might bleed to death. He sent me to oncology for a new drug
inhibitor called Imatinib which is a new wonder drug like Harvoni is. So the Dr.
there has sent me back to general surgery. That is for next week. I think my situation is one where because I am on Medi-cal their trying to scare me out of the
operation so that they won't have to pay for anything. All I wanted was the Harvoni.
They are both about the same price , very expensive. Imatinib was 30000$ when
it first came out , but seeing that it works so well for resected patients they have raised it to 90000$ a year. Some patients must stay on it for life. Imatinib is a protein blocker so it stops the cd117 protein from mutating. But my tumor is not
growing so to me it will be useless but they still want me to go on it after surgery.
My views are to do the Harvoni first to get rid of the hep C. They say my genotype
will work well with Harvoni , about a 90% success rate. Anyone know if a 4213
viral load is good or bad.
I guess what I'm asking , maybe from someone with medical knowledge , is my thinking right. I have filed an appeal with Cal. state to explain this to them
Thx Mike

P.S
About 5 mths ago they spotted a lesion on my liver when I had a CT scan. I also have a PET scan next week so I guess that will tell my more. I have done all the other scans and scopes and they found nothing wrong.
 

[JoAnnP]

You have a lot going on! Just wanted you to know I am hoping someone can give you some answers soon. I think you might want to get a second opinion from a surgeon. I worked for one for about three years, they are not all created equal.

The new hepatitis treatments don't last long so not sure why you should have to wait before getting started, by the time they do all this tests and follow up appointments you could be done with the treatment. Just my opinion.

Wishing the best of luck. When in doubt get a second opinion, insurance almost always covers second opinions.

[Else]

Mike, when you say you've been approved for Harvoni, do you mean you have a prescription that's been approved for payment by your insurance and is waiting to be sent to a Specialty Pharmacy?  Or do you mean you have a prescription from a doctor?  The two things couldn't be more different.

I agree with JoAnn in getting a second opinion regarding surgery.

Regarding the Harvoni treatment, I'm not in the slightest qualified to give a medical opinion.  Just common sense - if you can get treated for your HepC, I would do it asap. 

Best of luck to you with your upcoming PET scan.  I hope you get more info soon.

[mik1970]

Hi Else
I'll write what they sent me.

Reviewer decision: Meets clinical criteria for treatment of hepatitis C.
However does not meet criteria for ability to continue an uninterrupted
course of treatment due to recently diagnosed advanced GIST . Blah Blah
Blah then they say get back after operation and treatment.  So it looks like
I'm out of luck all around, there's no way I'm going to let these "bird brains"
operate on a tumor that has not grow even 0.1cm in 5 yrs  .
The surgeon says no to the operation and sends me to oncology.
The oncologist says he will put me on chemo and his team will call me. Two weeks
no one has called  I call the nurse to get a letter for my insurance co. stating
that the tumor is stable and I have no symptoms. I go down there to get the
letter and to find out about the chemo. The letter is the exact opposite of what
I want. The Doctor changes his mind about the chemo. He turns it over to
the hospital tumor committee , They send me back to the original surgeon who
said at the first  appointment that I will bleed to death if he operates. I don't see this guy til after the pet scan. 

[Else]

You'll have more information to work with after the PET scan.

Beyond "second opinion", I wouldn't let someone operate on me who said that.  Who in their right mind would?

I'm really sorry you're going through this. 

[JoAnnP]

Does your insurance have patient case managers? They co ordinate between doctors and the insurance company. They make sure records are accurate and when I worked for the surgeon they often accompanied the patient to our office. They only went in the room if the patient allowed it. If you are not sure if they offer this service it could not hurt to call and ask. I think having one could make this so much better.

If they do not offer one through your insurance company. The have volunteer case managers. I will list this site as a resource to one. You can also search for one in your area, by searching for patient advocate, illness and your location.

http://www.patientadvocate.org/news.php?p=1013