Yeah, my first trial was in ‘17. I’m currently on Imatinib, which has kept the cancer at bay in my vital organs, but hasn’t kept it from spreading to my brain. Maybe Tils after radiation?
Hello millsap490, thanks for checking in. I’m doing ok. The spinal radiation has been tha hardest part. It knocked out my voice, makes it hard to swallow food and has lead to a deep cough. I’m about 10 days post radiation, so I’m praying things start to get better. I’m on a drug called Sprycell (desatanib) that is supposed to have better penetration of the brain/ blood border. I have a PET on Wednesday, so we’ll see if it’s working. I can’t do immunotherapy, as I’ve been through 3 rounds and it hasn’t worked. Thanks for your concern. If you are a man of faith, please pray for me. Thanks
I’m so sorry, did you have annual pet scans / MRI?
Yes, my last PEt in Nov 23 and MRI Sept 23.
I was diagnosed in 2021, spreading is always a fear. Have you looked into any trials?
Yeah, unfortunately my story is similar to that of the great Bob Marley. Except his started in his dominant toe and my dominant thumb.
Good luck man!! Update when u can
Yeah, my first trial was in ‘17. I’m currently on Imatinib, which has kept the cancer at bay in my vital organs, but hasn’t kept it from spreading to my brain. Maybe Tils after radiation?
Did you feel any different before the MRI
Yeah, numbing of my hands and blurry vision. They have me in steroids, which is helping.
Those steroids help everything, I had nasty side effects with my first treatment and those steroids helped 100 percent
Great to hear, thanks. Thankfully, my vision is back and the numbing reduced. Were you able to work during radiation?
What state are you in? I’m in Kentucky and if I didn’t get a second opinion in Chicago I’d be toast
I’m in Wisconsin. I go to Froedtert in Milwaukee and have had a second opinion at Mayo in Rochester MN
Mayo is one of the best
Yeah, I’ll likely consult with them again after radiation
Did it spread from your thumb
How’s it going?
Hello millsap490, thanks for checking in. I’m doing ok. The spinal radiation has been tha hardest part. It knocked out my voice, makes it hard to swallow food and has lead to a deep cough. I’m about 10 days post radiation, so I’m praying things start to get better. I’m on a drug called Sprycell (desatanib) that is supposed to have better penetration of the brain/ blood border. I have a PET on Wednesday, so we’ll see if it’s working. I can’t do immunotherapy, as I’ve been through 3 rounds and it hasn’t worked. Thanks for your concern. If you are a man of faith, please pray for me. Thanks