We met with my radiation oncologist on November 7th and discussed treatment options for my right hip. He recommended a 5-course treatment over 5 consecutive days that shouldn’t produce any major side effects. Since I was (and still am) recovering from my last combo infusion of Yervoy and Opdivo on October 12th (plus the flu shot), we decided to wait till I was fully recovered and at least until after Thanksgiving. So I’ll be calling him eventually to set up an appointment to sign the consent and get the simulation done.
I was really impressed with the care I received from everyone at the Breast Center! I had the breast biopsy on November 14th, and the results came back the next day as melanoma – no shock there. There’s no big rush to treat it although I’ll probably have it surgically removed and just get rid of it while it’s still small (9mm). We might wait till after my next PET scan in February to make that decision.
My first scheduled infusion of Opdivo was withheld on November 2nd because I was still suffering from colitis. My second scheduled Opdivo infusion for November 16th was also withheld, even though the colitis was resolved, because my liver function bloodwork was wacky. The ALT normal range is 0-33, and my number was 362. Although it had been climbing through the fall (9 on 8/31, 21 on 9/21, 35 on 10/12, 61 on 11/02), it took a big jump this time. The AST normal range is 0-32 and my number was 205 after being 32 on 11/02. Together, this points to autoimmune hepatitis thanks once again to Yervoy. The prednisone treatment I thought I had successfully avoided was now back on the table. Starting Friday, November 17th, I take 60mg every morning through at least Tuesday the 21st. That’s when I’ll have the labs redone to see if I can start tapering off or not. The prednisone has me cranked up with extra energy and little sleep (guesstimating 3-5 hours per night), but it hasn’t made me extra hungry yet so I’ve been able to maintain my 25 lb. weight loss – yay me!
I completed my exercise sets six times over the first two weeks. Since Thursday I’ve already completed them three times – steroid energy for the win! Today I even completed a goal I’ve been working towards – I walked to the corner and back in 18 minutes. Now my sights are set on a half block roundtrip walk! It felt great to be outside!! I loved the smell of the fallen leaves and watching them swirl in the wind. I felt blessed just to be able to enjoy those simple things – nothing is taken for granted anymore!
We’ve got great momentum on the new Melanoma Support Group! The two women on the committee with me are fabulous and bring a wealth of insights and experiences. It’s amazing to hear how different our stories are and all we have survived! We are made of strong stuff – scars and all!! Our dates are chosen with a February start date, a room is being reserved, and the flier is ready for final approval. We have a great list of potential guest speakers that will certainly get us through our first year. I still want to create a survey to capture participants’ interests on meeting topics to be sure we’re addressing their needs, and an evaluation to gauge what we did right and on what we can improve from meeting to meeting. This fills my heart with hope – a gift we all can give to someone else!
If you made it to the end of another long post, thanks for being on this journey with me! Wishing you and your family a wonderful Thanksgiving together – make some memories!! We’ll have a full house and I can hardly wait!!