I haven't blogged in a few days/week as I have been waiting to find out some information from my oncologist before blogging.
Last week I called my neurosurgeon's office to find out about my EEG results and spoke with his nurse. They informed me they didn't have the results back yet but would call when they get them - haven't heard anything yet! (I had an EEG because I keep BUGGING my neurosurgeon about driving again... they need to find out if I have any seizure activity before they will make that decision.) The nurse also told me that I was discussed at the tumor board meeting that week and that both my neurosurgeon and the radiation oncologist were there and thought it might be better to have me go on the newly FDA approved medication (also the one that I went down to Detroit to get in on the clinical trial). But, ultimately, it would have to be discussed with my oncologist and she would have to agree to it.
Today I had an appointment at the oncologist office with the PA. My oncologist was also there today so Kurt and I first met with the PA regarding my check up (blood work was still VERY good, my potassium was above normal now and everything was good). I've been feeling very well this entire time since my 2nd treatment - a bit of a rash and my hip can get a bit painful (which has been normal for over a year) but I can handle that versus being sick, etc. Can't complain! Anyway, the oncologist came in and we discussed both options. Since I have only had two treatments of Ipi (and you should have four treatments to see how you react), she would like to keep me on that. She also said that studies show that people may have tumors grow during the 2nd-3rd treatment of Ipi but that once they are done with all 4 doses (and sometimes even months later), they may see that it works well and shrinks the tumors. She also said that while the new drug does show that the tumors seem to respond well and shrink fairly quickly, the trials have shown that the tumors can be back within 6-9 months and Ipi has a higher rate of keeping your cancer response for a much longer period of time - sometimes years!
So, the final decision is that since I haven't been overly sick and the Ipi seems to have some good responses in my body (like my hip hurting - as they figure that the Ipi is in the hip and causing some inflammation so that is why it is painful), I will continue my 3rd treatment next Tuesday as long as my blood work comes back good again! We can ALWAYS go to the other medication but for now, we will continue to finish the 4 treatments of Ipi.
My family and I put a lot of trust into the three wonderful doctors (plus countless other staff) who work together to make decisions that best meet my medical needs at this time! I know when I see them, they are all thinking that I am only 36 years old with two young children and they want to do what it is my best interest to keep me around for as many years as possible!
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