To Patty re Tykerb

[IRENE FROM TAMPA]

Patty

I read your post regarding your trying to get compassionate use for Tykerb.

The last chemo regimens I have been on seem to be failing so I am talking to my onc regarding trying to see what she can do to get me Tykerb.

I was just rescanned and will meet with my onc on Wednesday and see what is going on but by my markers (which I am sensitve to) all indicate that the two courses of Taxol/Carboplatin/Herceptin I have had are not doing anything. Before this I was on Abraxane and had progression on it also. It seems that my cancer is now not responding to anything (very scary for me).

I know that it is trial and error with alot of these drugs and just finding the one that will work for an individual. I have been on so many different chemos that my fear is that my cells are mutating and not affected by the chemos any longer. Surgery is not an option at this time.

You said that you received a package from the company. Do you think that it is something I should send for? Other then to have the information, will my doctor need it? I know she will be making the necessary calls to get something started.

I am hoping, along with so many others, that Food and Drug will speed this up. I have not heard anything else on how long it will take them.

Please keep me posted as to your progress on this and much good luck to you.

[Patty H]

The package didn't really give me a lot of information about getting the tykerb. It mostly was pamphlets about tykerb. It did have the number on it for the Dr. to call. But I think that number is on Joe's post. It also had a flow chart to see if you think you are eligible. I think about all of us that are stage 3 or 4 and have failed lately on about everything else would be eligible. The only reason we might not be is they want you to do a clinical trial if you are eligible for one and there is one in your area. I'm still in the holding tank, my Dr. left Thur for a trip , he will be back Monday, so I still don't know where we stand on getting this. He had told me to bring him the information as soon as I recieved it. He was booked up but he told me he could spare 10 min. to talk to me. But the girls at the desk, I think are body guards, they would not let me see him. So I wrote him a note and left him the information. They told me they would see that he got it.
Let us know how it goes with you and how long it takes to get it started. Patty H

[Sandy H]

My oncologist had the papers filled out and ready to fax on June 12th (couldn't do it before then). He received the question air and filled that out. When he hears on that he will meet with the hospital (don't know what that group is called) they will sign off and we should have it shortly. He told me he would call as soon as he knows when its coming or has it. He said for those that the doctors are telling it will be a couple of months then he said to ask the doctor is he has an investigator number and if he does not have one he will have to apply for one and it will take a while. He said if he/she does not have one then find another oncologist who has one and get the drug. It can not be gotting without an investigator number. Always something to learn!! hugs, Sandy

[pattyz]

Thanks Sandy. I'm keeping all this info in a 'file' for my onc...

pattyz

[Lisa]

Irene,

My onc has also sent in the necessary papers (which he requested). I believe that was last week. I have no idea how long it will take. I did have to get an echo since they requested recent heart info. Tykerb, like Herceptin, can affect the heart.

My tumor markers have been over the top for months now. But my recent scans (you name it) show that although I still have some bone and liver mets, everything is stable. I believe the Xeloda and Herceptin combo have made that possible. Prior to Xeloda, during this 3 year mets period, I had tried Taxol, Navelbine and Gemzar, all to no avail.

Love and light,

Lisa

[Patty H]

Sandy,

Thanks for the input. At least I know it may take a little time. My Dr. had told me if it was going to take some time, that we might do something like taxotere and herceptin, while we wait. He was waiting to see if there had to be a time inbetween taking another chemo and starting tykerb. I have taken taxotere with other chemo's and had some results before. The last time I took it with carboplatin and I started having a reaction to the carbo. So we are talking about just taking it with herceptin until we can get all the paper work done for tykerb. Patty H