Been thrown a curve ball

[Sherryg683]

I went in today to get the results of my latest PET/CT scan, thank God, I am still NED. The thing is my Oncologist looked at me and said "are we ready to quit this yet?", meaning my Herceptin that I take weekly. I asked him why, and he said that I've been on it a VERY LONG TIME (almost 2 years). I told him that I wanted to live a VERY LONG TIME. He said that we would continue it until January and then we'd stop it. I said "no", we might go to getting it every 3 weeks but I don't want to stop it. I then told him how some of the gals on my cancer board have been on it for over 5 years to stay NED. He said that the ruling was still out on whether it is beneficial and he knows I've done all the reading, so we'll discuss it more then. I know he'll do whatever I want, I guess he figure I'm just getting mentally tired of it, which I'm not if it keeps me alive. For you other stage IV girls that have been on it along time, does your insurance keep paying for it. Mine has given me no problems yet, didn't figure they would but then who knows? sherryg

[hutchibk]

Hi Sherry - keep on him if it is what you want to do...

Curious, how does your insurance feel about 3 month PET/CTs if you are NED? I am metastatic and they balk at it most everytime, and we only do them every 6 months usually...

[Stephanie B.]

Brenda,

My onc was doing PET Scans every six months and is now doing them every three months to monitor the Liver mets. If my insurance has had an issue my onc office hasn't told me about it. They have covered every one of them with no bills being sent to me. Usually if the doctors office pushes they will cover anything. Good luck.

Stephanie B.

[Sherryg683]

I have been very lucky with my insurance. My husband works for Tyco and they are self insured, blue cross just adminsters the plan. They have not questioned anything that I have done and I have had tons of scans. They paid for Tykerb when I asked to get on it, while I was NED. After a week, I got off it because of the side effects but they were willing to keep paying for it. I am waiting for them to say something but they never have. I am going to move my scans to every 4 months now...sherry

[chrisy]

Hi Sherry,

Just when you think you've got a chronic condition, they start treating you like you're cured! Maybe that's a good omen.

I was on Herceptin for over 2 years, with never a question - although the insurance co did redo the "authorization" once a year. I was always told that as Stage IV I would be on it indefinitely, and I think that is standard for that stage. Many on this forum, as you know, have been on Vit H for a long time.

That said, remember that Gina has been on AND off Herceptin for a lot of years, but she monitors her serum Her2 level closely. She would also agree this is not standard, but has worked in her case.

I think it comes down to what you are comfortable with - but I think insurance would not be an issue for you.

They love to keep you guessing, huh!

Take care
chris