I had my regularly scheduled PET/CT on Friday February 27th……and the Xeloda has stopped working. I have disease progression. This has come at such a shock. My last scans were perfect with stable disease. The Blood Guy and I were not expecting this at all and are quite disappointed. This was going to happen, we knew that, just not this soon…..
It’s a 2 page report but here are the highlights:
Abdomen and Pelvis: No abnormal foci FDG activity is identified. There is patchy infiltrates in the liver with no dominant focus identified.
Musculoskeletal: Several lytic lesions are stable in apperance. There are new lytic in several vertebral bodies (vertebrae). A new lytic lesion in the posterior T2 vertebral body measures approx. 11 mm. with a maximum SUV of 3.7. A new lytic lesion in the right T12 vertebral body with an SUV of 3.7. A new 12mm lytic lesion in the L4 vertebral body with an SUV of 4.2. There are several new lytic lesions throughout the pelvis. A new lytic lesion in the right ileum with an SUV of 6.4. A new lytic lesion in the left anterior superior acetebulum (hip socket) with an SUV of 5.3. (please read SHIT, SHIT, SHIT #7 to understand what SUV means)
So The Blood Guy calls me at 10:33 pm on the Monday after the scan. I, of course, already know the results but am so thankful he called. First thing he says is how this sucks. Xeloda has stopped working. He had looked at this scan side-by-side with the past scan, pulled the radiologist too and is just shocked at the progression,. He asks if I’m in any pain and I haven’t had any bone pain for awhile. the only pain I’ve been experiencing is with my fall in my left hip. We quickly discuss that and both agree that that is muscle/tendon/ligament pain. Not bone pain, I know the difference.
I ask about my labs and tumor marker (not that they heve been helpful before but….). He doesn’t have them in front of him and tells me he wants to see me in a week to discuss what to do now. I ask him about the liver infiltrates. He says he was focusing on the bone lesions but will take another look. 2 days later he looked and wants me to have a liver MRI and tells me to prepare myself for possible liver mets.
Liver MRI was scheduled for last Monday. Longest 5 days ever. MRI late afternoon on Monday and I want to knmow first thing Tuesday. I’m emotionally prepared for liver mets and have prepared my family and friends for this too. I’ve got a treatment plan in mind and 2 pages of questions for The Blood Guy. Total game changer
And then the MRI comes back ok. MY LIVER IS OK! She’s mad as hell right now and showing it. She is working overtime and tired. I have a toxic liver with fatty infiltrates. They are a protective mechanism in someone who is extremely healthy. Except I have cancer. Like I said, she is mad and tired. I just had a break with 5 weeks off chemo. Appearantly she needs more time off… LOL! Unfortunately, there is no break in the near future.