Hey all!! Once again, I'd like to apologize for not updating more frequently... life just gets in the way sometimes! So, I'll start with the update that I should have posted in March, because I had a PET scan done then. My doctor wasn't convinced that the scan would be clean with all the activity I had on the previous one, so she ordered another one. What's a little more radiation anyway right? Anyway... that scan came back, and it was the best scan I'd had in YEARS. There were only three spots that lit up, and the SUV on them was so low that they were only considered to be inflammation. Once again, couldn't believe that I actually got good news. The word remission wasn't used, but basically it looked like the cancer wasn't active and that the Opdivo kept working even though I hadn't been on it since June. I continued just going for monthly blood work. I also had testing done to see if my adrenal glands had bounced back at all since I've been on a steroid since August. We were hoping that we could reduce the dosage that I've been on, because long term steroids suck. So yeah, that was a big fail. My pituitary gland is definitely damaged, and those adrenals will not be bouncing back. Steroids for life!
So, my amazing nurse practitioner thought that we should do another PET three months after the one I had in March just to check and see how things are looking. I had that done on Friday. I also had my first mammogram (not fun!) because I'm at high risk for breast cancer due to the radiation I had to my chest. I went up to RPH today to have blood work done and see the doctor to get the results of my scan. Mammo was negative (yay!), but unfortunately the PET was not. There were three spots that lit up. They're still pretty small at this point, but one of them is quite active. For those of you that like details... there's one lymph node (left paratracheal) that measures 1 x .8 cm with an SUV of 8.2, another node (left hilar) measuring 1.2 x 1 cm with SUV of 5.5, and the most active is in front of my aorta... a "dominant lobulated prevascular mass" measuring 3.3 x 3 cm with an SUV of 14.3. For reference, an ideal SUV would be less than 3. So those good old cancer cells are back at it again. On the plus side, it's all still limited to my chest and hasn't spread to any other areas of my body.
So, you may be wondering what's next... that would be another biopsy. They have to confirm that it's still Hodgkins. This time instead of a needle guided CT biopsy I'll be having an endobrachial ultrasound guided transbronchial needle aspiration. That's basically a fancy way of saying that a pulmonologist is going to stick a tube down my trachea to get samples of the affected lymph nodes to biopsy. Sounds fun doesn't it? Then assuming that it's positive for Hodgkins I'll most likely start immunotherapy again. There is some discussion as to whether it will be Opdivo or Keytruda, but I'll probably stick with Opdivo since it worked for me in the past. And it's not like it's going to make my adrenal insufficiency any worse, so there's that.
So, that's everything in a nutshell. Could be better, could be much worse... but I'll get through it like I have every other time. And I'll update after I have the game plan figured out for sure. XOXO
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