So I just started my first dose of Tafinlar.
I'm pretty nervous and excited.
I landed in the hospital again 2 weeks ago for 4 days. I'll keep you posted.
Hoping and praying that you have a great response with minimal side effects. Do keep us posted. Stay out of the hospital. :)
One day at a time.
Stage IV 7/05 Liver mets
Karen, good to hear from you. I cross my fingers, hope you will have a great response.
All the best, Jenny
Under the circumstances I think that I would be "nervous and excited", too. I'm casting a strong "whammy" your way that the Taflinar works for you quickly and with very few side effects.
I am a little confused, though. I thought you were going to participate in the Merck anti-PD1 trial but now you're taking Tafinlar (dabrafenib)? Did you change your mind about the PD-1 trial or are you going to try that later or what?
Anyway, I have high hopes for the Tafinlar. You go, girl! WHAMMY!!
I posted on my experience with the Tafinlar-Mekinist combo a week or so ago. I've now been on it for 3 weeks. Recognizing that the treatment is only a "bridge", I've had outstanding results. A subcutaneous tumor on my shoulder (4 cm) started to shrink within 2-3 days (it is now almost gone) and I also started to "feel better" within that same time frame--give it at least a week, however. The organ that was most "at risk" for me was the liver--and I had a decent amount of liver sensation/pain, particularly in bed. Gone within a week! And my liver functions are now essentially normal. I also had a small brain met that was identified before I started the combo. I had it gamma-knifed last week and the MRI showed that it had shrunk by 25% while I was on the combo. On the other hand, I developed a jaw tumor before I started the combo and lost some feeling in my mouth. The combo has not (yet) resolved that. A minor nuisance in the scheme of things.
As for side effects--keep in mind that I'm on the combo, not Tafinlar alone. Hopefully I'm not jinxing myself, but I have had very few side effects. Some joint pain (particularly hips) early on, but that seems to have resolved. Some "skin thickening" on my forehead. Minor and manageable stuff.
I hope you get similar results and have an easy time with any side effects.
I think I confuse myself sometimes too! Because of the brain mets that had developed within a relatively short period of time, the really severe ear/scalp pain, etc....they (the onc's) felt that I was being "untreated" for too long. It's been very interesting to see my husband's new role here...have a good night, my good friends.
Don't Stop Believing
Karen - just thinking of you and I hope all is going well with the new drug. You sure have been through the ringer, keep fighting!
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