I am not sure about old onc. I did have a jump in my pcr. However I called the lab and they had changed over to the IS Scale. Also my labs are sent out of state, so even as the onc said they is much room for error. She did another PCR lab 1 week later and the PCR had significate difference (much, much better). That there was no way the other PCR could have been right. Even the onc I went to for a second opionion said the labs were very questionable as to accuracy.
Anyhow at Indiana University they do their own lab right there on site and interpret them, so they should be much more accurate then sending them out of state. Actually I believe PCR labs should be done in 48 hours or less or the blood becomes tainted.
Actually I think my old ONC probably has mostly breast cancer patients. She has many patients and very many of her patients have a lot of respect for her and consider her to be the best. However IU has an expert group on Leukemia and when I called the LLS they said the IU Simon Cancer Center was rated as the #1 premier of Indiana. I think it is important to go to someone who is in that particular field of the disease that you have. I like it that Indiana University has a group of Leukemia experts I like to think of the group as "a think tank".
I got the greatest Christmas present yesterday, when Indiana University billing called me, and they talked to my insurance and their (IU) billing people and they are going to code my visits so the insurance will pay for them.
Wow, regarding your post "It is very expensive, $8,000. per 28 days.' my last shipment of Gleevec was over $5,400.00 for 30 days supply of 400mg. I am very fortunate that my insurance picks up all but $20.00, then Opus co-pay was picking up the $20.00 I guess Novartis is cutting the co-pays off Jan 2012 for Gleevec, but the $20.00 a month won't be a big deal. Just praying we our insurance doesn't change before it becomes generic. But then if for some reason down the road I would need to change, well you know you got to do what you got to do and not worry about it, just pray that God is watching over us.
My previous ONC mentioned and was adamit about going on Tasigna, I don't know if that was because it is another Novartis product like Gleevec or what her thinking was. I heard that sometimes Drug Companies give onc kick back or perks, I do not know if that is true. But when I talked to the Doctor at IU he said we can do the labs in Jan, then another one in 3 month and then another one in 3 months and if I am on an even level he is ok with that. He said he doesn't necessarily go by the guidelines that are set for the whole world. Many gray areas as every one is different. He also mentioned Sprycel. When I read up on Tasigna; Some of the newer patients don't seem to like this thing with Tasigna about when you can take it on an empty stomach I think. Interesting that you said you don't see very many of the patients on the board after awhile?? Was a little worried with Tasigna about the heart problem as I have an irregular heart beat and my family history of heart problem. A brother 2 years younger who has had quadruple by pass, a stint, and 3 defib and his heart shocked three times this year. He was to be my stem cell donor if I need one. But then I see Sprycel has bad pleural effusions, like you. So I am hoping and praying that my labs will be good and I can stay on Gleevec. It has been six years and I have gotten used to Gleevec and we have made friends.
I am not young either I will be 64 this New Years day. Yea the doctor at IU said some patient go off the TKI for a year and then when their counts go back up, they go back on something. It kind os scare me to do that, as you know your spleen could fill up or something go bad. I was reading Trey's article *it was extremely important in helping me make this decision not to go off the drugs." I would have to go look that link up. You can click on Trey name I look at his activity as I forget what it was under. But anyhow I realized how complicated CML really is. I just thought the problem was at the Chromosome level where the #9 & #22 break and fuse together. But as I understand it that is only the bottom level as far as the drugs can get to. I guess when the marrow make the stem cell which make another stem cells, something goes wrong at that level before it turns into blood. There are two sides the Myeloid and the Lymphoid. the Myeloid making the red cells, platelets and white cells. So something goes wrong at the top of the chain of command and the TKI can't get to the ancient stem cell or so called bad stem cells as the "ancient mother ship". Why can't they call the bad stem cells "the Ancient Father Ship"? Anyhow she, bad stem cells is somewhere close to the top, like as in genealogy. The ancient stem cell can hide close to the bone and lie dormat and come out later and does her thing. The B Cell from the Lymphoid side can't get the the bad stem cell hiding next to the bone as not enough oxygen. Something like that kind of complicated, you would have to read Trey and Call Me Lucky article. But after reading that I would think long and hard before I went with off my Gleevec. I think I would like a little more research on the patients that have went off their TKI, so I am just going to hang low awhile.
I will have to see if I can find Trey's article. Call Me Lucky had a good one too with a good article. I really did not think CML was that complicated. That bad ancient stem cells is quite tricky.
I appreciate your input & glad to hear you are having a good response on Tasigna.
Have a Merry Christmas and Blessing. Praying that we will live long enough to see a cure. Even though most of my life is over at 64 I would like to live long enough to celebrate the cure. My poor friend has bad, very very bad breast cancer. She just had several chemo, breast mastectomy, skin graft, infection, graft removed, it is horrible, much worst then they thought. Now she has to have radiation. When I hear and read her journey on caring bridge I feel lucky to have CML.
Well I will catch later. Hugs and prayers for all of us.