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October 29, 2014 at 12:29 pm #22220msue5Participant
Recently had Pet/Ct 16 months post Ipi and the node in rt axillary has grown slightly and pelvic node remained the same. There was one complication that may have influenced the results. There was extravasation of the radio tracer which means most of it infused into the arm and not the vein. My oncologist explained that my right axillary node basin received most of the overflow. Catherine Would you check with the scientific board about the reliability of a scan when this happens? If my scan results are reliable then IPI is still doing its job. I have never been NED but stable is great! I have been going to PT to regain some strength and stamina that I have lost due to 8 major surgeries in less than 4 yrs. I still struggle with neuropathy pain in left leg where I had CLND and Flap reconstruction to groin. It is better on Neurontin but some days still incapacitating. I am getting Botox injected into my rt abdominal muscles Nov 7 in hopes it will decrease abdominal muscle spasms that are a result of having the rectus muscle moved during flap reconstruction. If there’s any left they can put it in my face!This will be done under ultrasound. Hope everyone is well as can be. I am so thankful to have options for fighting this disease. Stage 4 for 2 yrs now and still going strong. Well I am working on the strong part!
Mary SueOctober 29, 2014 at 12:48 pm #65746Catherine PooleKeymaster
I’ll try to find that out for you Mary Sue. You are indeed strong and resilient and awesome! Indeed, you’ve been through so much and still have your sense of humor. Keep up the good work!October 29, 2014 at 1:48 pm #65747AnonymousGuest You are indeed awesome Mary Sue and yes, stable is good.
With that in mind, have you considered PD1 with the idea of killing it off for good?
JeffOctober 29, 2014 at 2:38 pm #65748RJoeyBParticipant
Sounds like overall positive results, congratulations! With respect to:msue5 wrote:
There was one complication that may have influenced the results. There was extravasation of the radio tracer which means most of it infused into the arm and not the vein. My oncologist explained that my right axillary node basin received most of the overflow.
I had an experience with one of my PET scans a couple of years ago, where the initial injection of FDG tracer infiltrated the vein in my hand. It hurt like crazy! I’ve lost count of PET scans — every three months for 4 years now, so at least 12? — but they always ask if there’s any pain when they’re infusing the FDG and I always wondered how it could possibly hurt; I found out that day. The bruise covering the top of my hand lasted weeks. Anyway, what ensued was a mad consultation among the radiologist, physicist, and PET tech, calculating how much FDG was still in the injection machine, how much was in the IV tube, how much was in my system, and how much may have “escaped” into my hand, along with the extra time elapsed for the radioactive decay. They have calculations to account for most of it, but I have to believe in cases like mine (and yours) that the precision goes down, making the PET still useful for identifying hot spots, but less so for accurately assessing progression or response in relation to prior scans. Hope that makes sense.
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