Tuesday, April 23, 2013
Update on Mark Perkins
Dear Friends and Family,
Once again, It has been quite a while since I provided an update. A lot happens in between, but the most relevant information is basically what comes from CAT scans. I recently had another MRI scan. Seems I will have them generally on a 3 month schedule
The short story:
1) The radiologist reports the lymph nodes are overall "stable" and that the tumor is responding appropriately to chemo. My oncologist sees this as good news. Even so, the radiology reports are difficult to understand, some of the data might seem to point to the contrary and my oncologist admitted yesterday he is unclear on some of the specifics of the report himself.
2) I will have an endoscopy next Tuesday to obtain sufficent sample amount of the tumor to see if the tumor matches to any of the 236 recognized gene mutations. If it matches to one and there happens to be a drug for that mutation, it might be utilized at some point in my treatment.
3) My current treatment is FofFiri, it was Folfox. The difference is they swapped out oxalyplatin to irrinotecan in the mix. This happened in late January. The reason was to try to avoid neuropathy in hands and feet. That didn't exactly work. I have had increasing neuropathy effects subsequent to the change. My last Oxalyplatin was late December. Frustrating that there is no clear path to address the neuropathy, both from how to lessen effects and whether the true culprit is the oxalyplatin of the past, or 5FU.... which has no other replacement drug.
4) Overall, my main physical issue is the neuropathy in my hands and feet and secondly the fatigue that comes from the chemo. Still, I am able to do many things physically. I was able to visit Oahu at Mom and Al's invitation and generosity, went scuba diving one day and snorkeled basically every other day as well that I was there. Water is a great place for me to be, I'm very bouyant! :)
5) I haven't been all that happy with my current oncologist at UCSD. Too much to comment on here, but I am looking into other oncologists in the UCSD system and potentially moving into another system.
I continue to receive cards, words of encouragement and messages of daily prayers going up for me from so many christians that either know me directly or have become aware of my situation. I thank you all for this and know that my updates are being passed on beyond this group to fellow christians in various cities and states. Thank you all for your love, encouragement and prayers.
If anyone you know wants to be added to my direct email updates, feel free to have them contact me with that request.
The picture attached was taken just days before my diagnosis last August. We now have another grandchild, Austin, who was born to Zach and Adrienne. That makes three boys for them. My aunt Geviene says any mother raising three sons gets an automatic ticket to heaven. :)
Well, I just finished another day at the infusion center and will be back in two days to take my pump off. Time to vacate the chair for the next patient.
Love,
Mark
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