First off, in completely not-even-remotely-related-to-cancer news I sang in front of people on Sunday. I was a part of a video recording session with Opera on Tap New Hampshire, and I will be sure to share the video once it's complete. But I gotta tell you, the bit of normalcy it provided (despite the distancing and masks whenever not singing) was really nice.
Now on to what you're all really here for-- I had my ultrasound yesterday morning to investigate why my uterus lit up like a disco ball on my PET scan. The results came back that I have three uterine fibroids, one of which may be pedunculated. Do you know what those words mean? Me either. One moment.
Uterine fibroids are noncancerous growths of the uterus that often appear during childbearing years. Also called leiomyomas or myomas, uterine fibroids aren't associated with an increased risk of uterine cancer and almost never develop into cancer. (source)
Pedunculated fibroids are benign (noncancerous) growths in the uterus. These fibroids are attached to the uterine wall by a stalk-like growth called a peduncle. The main difference between pedunculated fibroids and other fibroids is the peduncle. (source)
So beyond the obvious yikes and also ouch (and also the inevitable "oooh look this thing that only happens to people who menstruate isn't well studied, well understood, or easily solvable, what a surrrpriiiiiise") the take is, I guess, that it's maybe not related to my metastatic melanoma? I have not had a doctor go over these results with me yet, so I can't be sure until I do. But I have an appointment on Friday with a gynecology oncologist so I'll be keeping my fingers crossed here.
Between you and me, friends, I'd say they could take the whole damn uterus out and trash it.
It's been nothing but trouble since day one.
But I digress.
Yesterday afternoon I had my treatment training session at the Cancer Center. They sat me down and took us over the drugs, side effects, scheduling, and what to expect with the Double Immunotherapy Drug Whammy that I had chosen. Quick sidenote: this treatment plan is what will begin AFTER I see Dana Farber and may be subject to change. If DF has any clinical trials available to me we may do something else entirely. The big learnings from the session were:
I will be given two drugs, Ipilimumab (for obvious reasons I will refer to it by its brand name Yervoy) and Nivolumab (known by its brand name Opdivo), but the schedule will be four sessions of BOTH drugs (Yervoy first for 90 minutes, then Opdivo for 30 minutes) every three weeks. Once those four sessions are over they will stop the Yervoy and just administer the Opdivo every other week for, well, as long as it takes.
The first four sessions will be the hardest because of the fact that it is both drugs.
Once we learn how the drugs impact me (do I get super sleepy on day 4? super nauseus on day 2?) we can schedule the sessions in such a way so that they perhaps don't impact my life as much.
I should be on the lookout for side effects that show that the drugs are doing more harm than good, but I also should expect to live my life with a general feeling of nausea and fatigue. I also could potentially experience coughing or hoarseness in my voice (horror) but those would be bad and I'd have to call the doctor if I experience them.
There will be no limits on my activities, I will be only limited by how I feel. This will allow me to sing, run, exercise, etc. as long as I'm feeling up to it!
There is a dietitian at the Cancer Center that we can work with if I find my tastes have changed or if we need to manage any weight changes.
Of course, again, all this hinges on what I learn at Dana Farber. I am not interested in taking a randomized clinical trial, or anything so experimental that it won't be covered by my insurance or something. But I will be interested in hearing what they have to say about my case. Especially if they have any thoughts on the fibroids thing. The appointment there is tomorrow (Wednesday) so I will surely update with learnings after that!
Also here is where I'll be spending A Lot of Time if we go this route:
