The Real Thing

I had a 3rd Signatera test last month. It was also positive. Did I already tell you that? It’s all a blur…I changed oncologists last week. I really like Dr. Joyce, and her nurse is probably my favorite medical professional I’ve worked with throughout this whole experience. But IU Health is a nightmare. I can’t get through to anyone, I can’t get test results, the department is understaffed and overbooked. It’s a mess. I now get all of my care through Community South in Greenwood, which is an MD Anderson affiliate. Dr. Agarwala is my new oncologist. I saw him last year for a second opinion.

He is willing to order a chest/abdomen/pelvic CT. He is willing to order future Signatera tests. He would not push me to do either, and he would prefer I discontinue the tests. The only change he is making at this time is doing an ultra sensitive estrogen test every few months. He said in his experience there are lots of women my age who have “chemopause”, but after a year they regain some ovarian function. If tests show my estrogen levels increasing, he will add an injection to shut down my ovaries on top of the hormone suppression meds I already take. He also switched me from Venlafaxine (which is an antidepressant) to vitamin E for my hot flashes. The venlafaxine was a low dose, but I still have to wean off of it to be safe. That said, I’ve only been on the vitamin E for a couple of days and have already had major improvements!!

I am considering not doing the testing or the CT scan and signing up for the clinical trial in Ohio (it’s a Yale study). They would do both, but I would receive a lot closer monitoring in the context of a clinical trial. I am also considering doing one more test (through my oncologist, not the study) after I’ve been on suppression for 9 months. If it’s still positive, then I will do the CT. If the test is negative, I will not do the CT and not test again unless they make major advancements in this field. I don’t know yet which I want to do. 

For the most part, we’ve returned to normal life- at least until I have surgery next month. Although I may have shingles??

Nurse Jennifer thinks that’s what it is, but I’ve only had the one spot! It itched, then it hurt. Now, it’s mostly healed. Weird.

I hadn’t done an update in a while, so I thought I’d check in. Again, I’d really appreciate it if you could retweet that link.

Happy New Year!