Prednisone Continued

My Opdivo infusions continue to be withheld due to my elevated liver function blood tests thanks to Yervoy causing autoimmune hepatitis (after colitis). I was down to 10mg of prednisone a day but my numbers jumped up a bit, so last Friday I had to start back on 60mg of prednisone a day for a week, then go to 40mg for a week, 20mg for a week, and then 10mg for a week (or longer), which will put me on track for infusion on January 4th. That was the plan till yesterday’s liver function bloodwork came back with an even higher number (295) than last week’s (152). So today I start five daily infusions of Solumedrol (methylprednisolone) in place of the prednisone, which should provide a faster response. Solumedrol is a potent anti-inflammatory steroid with greater anti-inflammatory power than prednisolone so it should knock down this autoimmune response, and I’m hoping for lower liver function numbers next week! I’ll start back on 60mg of prednisone Monday morning and have my liver function tested again.

Although I voiced my concerns about being off infusions for two months, my oncologist assured me that this is not unusual, and that the Yervoy is still working in my system. Plus, I had no new metastases in my last scan, just already existing tumors.

I asked about scheduling radiation on my right hip now that I’m feeling better, but my oncologist wants me to hold off till I’m on the Opdivo infusions. That gives me a reprieve till January, at least.

Last week I revisited the audiologist for a 6-month checkup on my hearing and ear tubes. I had to have the tubes inserted during my hyperbaric oxygen therapy treatments back in June. My hearing is good, and both tubes were still firmly in place. I asked about having them removed rather than continue to wait for them to fall out on their own (could take another six months!). My concern was how much it would hurt. The doctor said that some describe it as the worst pain they’ve ever felt, while others tolerate it well. He also said that women tend to tolerate it better than men. Well, I knew it wouldn’t be the worst pain I’ve ever endured, but I wasn’t too excited about having to deal with any pain on any level. I finally decided to have one tube removed to see how it went. The doctor said the left tube was a bit crustier and might be the easiest to remove. The shape of the tube is like a bar bell that has to be pulled/maneuvered out of the ear drum. Well, it did hurt and was uncomfortable enough that I chose to stop after one. Now, of course, I wish I had just gotten the right one removed too. Oh well. I go back in six months so, if it hasn’t fallen out by then, I’ll have it removed in June.

Exercise is still going well. I’ve walked as far as a mile, including yesterday, and I feel as though I have more endurance. Of course the prednisone has me in fairly constant motion. I’m increasing my reps, though I haven’t increased weights yet. Completing the exercises and documenting my progress gives me a great sense of accomplishment! I like feeling as though I’m doing something every day to become stronger and healthier.

The Penn State Cancer Institute Melanoma Support Group is all set for its first three meetings. The flier is ready to be printed, a Facebook group has been created (Penn State Cancer Institute Melanoma Support Group), I ordered some resources from the Melanoma Research Foundation to distribute, and I couldn’t be more excited! I created a meeting evaluation form, a survey to learn of members’ interests in meeting topics, and we have a great start on a set of resources to share that include books we’ve read, blogs we follow, and organizations, conferences, and websites we recommend. We’ll meet the first Tuesday of each month from 5:30 to 7:00pm in the Cancer Institute. The first meeting is in T2500 where Cathy Bryan, Cancer and Exercise Specialist, will introduce us to the research being done in the Exercise Medicine Unit (EMU), an exercise room located in the 2^nd floor infusion suite. The EMU opened in late summer 2016, and is part of the Schmitz Cancer and Energetics Lab. The mission of the Schmitz Lab: “The Schmitz Lab is leading a transformation in cancer care, by establishing evidence-based physical activity and nutrition interventions as the standard of care from the point of diagnosis forward, including active treatment, rehabilitation, and for the balance of life.” The most prominent study currently running in the EMU is the EnACT Study, Exercise in All Chemotherapy, an exercise intervention that offers an individualized exercise program for patients currently going through chemotherapy. With 50 patients currently enrolled, the goal is 250. This is the study in which I’m enrolled!

This month, December 17th to be exact, marks the 10-year mark since I was diagnosed with Stage II melanoma. I’ve been Stage IV for a few years now and can barely believe all my hubby and I have survived together! Just last year I was preparing for a December 22nd brain surgery! Our scars are our marks of struggle, strength, and endurance. Cancer doesn’t take a break, but is a journey full of twists and turns, highs and lows. Cancer has been a life-changing event for both of us. We continue to love and move forward through all of it. Together we are facing the future with great hope. I read this in the Lily Oncology On Canvas: Expressions of a Cancer Journey, “Living each day as though it was the most important day of your life is the strongest defiance that one has against the devastation of cancer. One may not always come out on top of the disease, but is always able to be victorious if each day of one’s life brings new wonders, joys, and triumphs.” Every day is a gift with a new sunrise and I feel blessed. Life is too short to be grumpy and miserable! I strive for happiness and good health, and a new day to celebrate life.

The Summer of HBOT

The longer I wait to post, the harder it is because so much happens each month! The trouble is that in the cancer world, if you don’t post regularly folks start thinking the worst. Well, we’ve put off “the worst” for a bit longer :-). I’m doing well!

In my last post I mentioned the bulge in my left pectoralis muscle and the discussion over possible treatments. Well, I ended up having radiation at the end of June. The radiation consultation was on my birthday with the planning session a week later. I had five treatments each day for five days (June 27-30, July 3). My left shoulder area still feels heavy as a result which I guess will dissipate over time. In my last PET scan, the “bulge” was getting smaller.

In May I began HyperBaric Oxygen Therapy(HBOT) treatments every weekday. During my ninth dive I experienced ear pain and had to visit an ENT doc to get tubes in my ears. Otherwise it’s been quite uneventful, thank goodness. From the time I leave the house till I get back home again, it’s about four hours. Next Tuesday is my 70th and final treatment. It’s been quite the commitment and the sacrifice of my summer. The good news is that it’s working (VERY slowly) and my wound is filling in. It won’t be completely skin graft ready by next Tuesday, but it’s gotten me a lot closer. I also had outpatient surgery last Friday to complete the debridement in areas that would have been too painful to debride while I was conscious, and to drill small holes in the exposed bone in order to encourage tissue growth in that area. I had this bone drilling procedure two years ago and it was quite successful then. My pain level seems much lower since Friday, and I even decreased my pain meds, going off the long-term pain patch Sunday night. Now my dressing is just wet-to-dry twice a day, which is a bit simpler. I do NOT miss the Mesalt dressing at all!! That bugger hurt!!

I had been on Keytruda infusions every three weeks since May 29, 2015 – over two years! While I’ll say that it kept me alive, it never got me to remission. Every PET scan, every three months, had some new suspicious area, inflammatory spot, and/or metastases. It was always small, but was always something worrisome. My last PET scan was the same way with a very small spot in my right breast and inflammation back in my right hip, so my doctor finally decided to change things up. My last infusion was a combination of Yervoy (ipilimumab) and Opdivo (nivolumab), both still immunotherapies like Keytruda. Yervoy stimulates T cells to fight melanoma and Opdivo allows those T cells to recognize melanoma and attack it. Good combo, right?! It was expected that I would get diarrhea from the change in drugs, but I didn’t. I also expected a full body rash from the Yervoy, which I’ve had by itself before. I didn’t get the rash, but I do get a new itchy red welt every few days. That’s it for side effects so far – very manageable! I’ll get a total of four combo infusions, and then be on Opdivo by itself depending on the next PET scan.

The great news is that my tumor load continues to be small. With new metastases showing up in every PET scan we’re devastated for about 24 hours because we’re always hoping for no evidence of disease. Then we get back in fight mode and remind ourselves of the small tumor load. We’re at least grateful for that! Sometimes I have to look at a ruler and remind myself how small mm and cm are!

So, coming up is my next combo infusion (#2 of 4) and finishing up the tissue growth in my wound so I can get the skin graft to finally close it! Remember, the initial surgery that started this wound was March 10th. It will easily be six months from that surgery till the skin graft is scheduled in late September (I hope!!). I’m hoping that my next post will be about the skin graft!

With the skin graft done, I’ll rejoin the gym and do that regularly to lose steroid weight and get strong. They know me there, so I know I’d be in good hands. I’m hoping that with the wound finally closed, I’ll be able to ditch the brace a few times a week to help strengthen my left side. I’m anxious to be more active, especially outside. This week I’ve had two people tell me that they think I’m moving better already :-).

Think good thoughts for granular tissue growth in the wound!!! I look for it every time I do the dressing change!