I hope everyone is feeling good - mentally and physically! I have been pursuing the trial with Dr Rosenberg at NCI that cured Judy Perkins and another of stage 4. The first inquiry it was only in my bones. They needed a 1cm tumor that could be harvested. So, after my follow up scan with Mets to liver, I reached out. Those Mets were smaller than a half cm. But the one on my scalp is 1 cm. They gave me follow up questions and info. For example, you stay with your current oncologist. You would do this trial sort of in between meds. It requires a 3 week stay in Bethesda. Then prior to implant, you do one round of chemo to set the environment. I was interested —all in. Well, because I have an autoimmune disease of my biliary ducts, they said it was too risky. So, while I can’t participate in trial, I hope it can get approved quickly. I think this is what will help me. So I’m in a funk dealing with that rejection for moment.
Separately, been on afinitor and exastamene a month. In the past 2 weeks, I wake in the morning with my left hand fingers cramped. It’s painful and feels swollen but there is no swelling. Google tells me it’s arthritis but I’m convinced it’s linked to my meds. If it’s the only pain to deal with fine...it goes away about an hour after waking up. I’ve also had bad headaches. I’ve previously been a migraine sufferer. Dr ordered brain mri but I declined. I’ve got no other symptoms and honestly don’t need to get worked up about that scan. I know I have a tumor at my C5 and think at night when I lay that it’s hitting a nerve. Maybe I need an adjustable bed...
In case you wondered, I’m 47 years old! Hoping to shake my funky feelings. Love and hope to you all. ❤️