Which is easy for her to say since by "we" she meant me. I was a little bit dumbstruck as I felt that we had just discussed the plan of action, which was to switch to Bosutinib if my BCR-ABL came back higher. I reminded her of the plan. She again expressed that she felt that if Ponatinib did not work for me, that she was very skeptical that Bosutinib would be beneficial. I straight up told her that I am not ready to "proceed to transplant". My life is relatively normal, despite my cancer not being at "safe" levels. I can't reconcile myself to undergoing a stem cell transplant until I have exhausted my available options. Bosutinib is currently my last FDA approved TKI option, and I intend to give it my best shot. That said, I know, and fully understand that having a transplant is now more of a probability for me.
So why am I all bent out of shape about having a SCT when it could essentially cure me? A transplant is not a decision that can be made lightly. Besides a high mortality rate, there are a whole host of other complications that could arise. From graft failure, organ failure, infertility, secondary cancers, all the way to death. (Lookie here.) It's hard for me to imagine going from my normal life, to locked down in a hospital for potentially 30+ days, and recovering from the most invasive medical procedure there is. A realistic recovery time for a stem cell transplant is at minimum 6 months to about a year. A FREAKING YEAR. Some complications can last a lifetime. So maybe you all can understand why I'm more than a little reluctant to jump right in when there is still a possibility (however remote it may be) that I could respond to drug therapy.
Hopefully next week, I should be trading in Ponatinib for Bosutinib. And hopefully Bosutinib will beat my cancer into submission. Or remission. That would be great too.
A new phase I clinical trial under novartis is recruiting patients. Another option (apart of SCT) if all other current TKI not working as they should
ReplyDeleteThank you AquaDolf. Are you referring to ABL001? I've been looking very preliminarily into the trial, but there are currently no locations near me.
ReplyDeleteI was going to suggest the same trial. It is too bad there there is not one in your area, but it might really be worth checking into. From what I have seen ABL001 is completely different than other TKIs and it may be worth some travel (hopefully it would be minimal) to avoid the SCT. I have followed this blog for a while and was really optimistic that the Iclusig would do the trick for you.
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