Dear Josh,
Thank you for your thoughtful updates. I am very grateful that your brain MRI showed no mets which is wonderful news
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I agree with Ivan that it is important for you to obtain more information about the possible lung met, to compare your most recent and previous scans, to discuss the scans with Dr. Federman, and to closely follow the lesion. Like Olga, I also question the purpose/wisdom of you beginning to take Pazopanib, especially since your disease appears to be relatively stable at this time. Based on my personal knowledge of other ASPS patients who don't participate on this Board but who I am aware of who are/have taken Pazopanib, Pazopanib has unfortunately thus far not proven to be successful in providing significant tumor shrinkage and sustained disease stability for at least four of the Pazopanib ASPS patients who I have followed, with three of them having heartbreaking disease progression, one of them concerningly having lost contact and not responded to my private messages during the past eight months, and one of them having recently now tragically lost his courageous battle. I of course understand that each patient may respond differently to different drugs and treatments, and thankfully a couple of the Pazopanib patients on this Board seem to be having a successful response thus far, but it seems that at this time Pazopanib is still too unproven for you to begin taking it during a time of relative disease stability and when other treatment options are available to you. I certainly don't mean to upset or frighten you with this information, but because so little documented data is available at this time about ASPS patient response to and results with Pazopanib, I feel an obligation to share any information that I have found through my constant and extensive research and networking because it is important for everyone to be aware of as much anecdotal treatment information and results as possible before making critically important treatment decisions. Additionally, due to the known risk of possible rebound and disease progression when TKI drugs like Pazopanib are discontinued, it does not seem like a good plan to begin the drug for 3-4 months and then discontinue it for several weeks for laser resection which could possibly result in aggressive disease progression during the time that you aren't taking the Pazopanib. I think that this is certainly a concern which needs to be addressed and discussed with Dr. Federman.
I Hope that your new lung lesion proves to just be benign scar tissue from your laser resection, and I will be anxiously awaiting Dr. Federman's review and opinion about it. In the meantime, please take care Josh, know that my special thoughts and very best wishes are with you, and keep in touch with the Board as you are able.
With deepest caring, healing wishes, and continued Hope,
Bonni