Well hello there!! It's hard for me to believe that it's been so long since I've posted an update on here, but I was taking the "no news is good news" approach, LOL. So that means that it doesn't take a rocket scientist to figure out that an update after such a long break means a little bit of bad news. So I guess I'll start with a brief recap of things since my last post.
I ended up continuing on immunotherapy (Nivolumab) for a full two years on it's own before we decided to stop. It's still not viewed as a curative treatment, so the plan was just to monitor things with regular blood work and CT scans to make sure my remission was holding. And it did, for a pretty good stretch. My last treatment was in October 2020, and everything continued to stay stable until the CT scan that I had at the beginning of March. That scan unfortunately showed two spots that had increased in size by about 1 cm each. I then had a PET scan done a couple of weeks ago to check to see if there was activity or if it was just scar tissue. Bet you can't guess which one it was!
So now on to the fun part... Biopsies! My doctor explained to me that due to the locations, my scan would need to be evaluated by both interventional radiology and pulmonary to decide which spot could be accessed better (and by which method) to get a good sample. I don't have the best history of successful biopsies, so there's that. He also said that he wanted me to get another bone marrow biopsy done. I was thrilled to hear that because they're so pleasant to have. Oh, and he also wants me to go back up to Roswell to re-establish care up there which will most likely entail discussing other treatment options. Those options (aside from a clinical trial if there are even any going right now) will most likely be CAR-T cell therapy or an Allogeneic stem cell transplant. Neither of which are on my want-to-do list at any point in the near (or distant) future. As long as there aren't any surprises from my biopsies, the plan will probably be just going back on Nivolumab infusions since it's been pretty successful for me in the past.
All that being said, tomorrow is my bone marrow biopsy and aspiration, so that will be fun. And I just heard this afternoon that the radiologist looked at my PET scan and said that he felt that the spots were too small for him to successfully biopsy, so that means the CT guided needle biopsy is off the table. If pulmonary doesn't think they can get to the spot (there's only one accessible for them) with a bronchoscopy, then I may be looking at another VATS (surgical) biopsy. That's a super fun one, but at least I know they'll get what they need. It's frustrating that I even have to get one because the odds are extremely low that it's something other than Hodgkin's, but I don't make the rules, LOL.
So, I think that about sums it up... If you've read through my babbling this far, thank you! I appreciate any positive thoughts you may want to send my way!! I've got an appointment in a week to go over my bone marrow biopsy results, so I'll post another update then. ❤️❤️❤️
