Liver Function Progress

I’m getting closer! Last week my liver function number was 67, and this week it’s down to 36! Normal is between 0 and 33, so I’m almost there. This week’s number is good enough to drop my prednisone dose to 10mg, and it puts me on track for infusion next week. The only changes I’ve made are taking 2 doses of Aleve each day to manage low-level pain, and I’ve been a complete teetotaler for the past few weeks instead of having an occasional glass of red wine or dark beer. I do miss my nightly glass of red wine! Oh well, small sacrifice if it’s making a difference. I’m hoping the lower prednisone dose will let me lose my steroid “moon face,” get my tastebuds back, and decrease the sensitivity in my teeth.

I started with a new physical therapy practice last week, and my exercise regimen has doubled. The therapist is hooking me up with a hand specialist for a consult to see if they think any improvement can be made with my left hand function. She’s also given me contact information to have my left foot/calf brace re-evaluated for one that might allow for more ankle movement. All of this exercise has me feeling good!

I also had my first acupuncture appointment last week and go again today. It went really well! She used 15 needles, including 4 in my right ear for PTSD, for the trauma she said I’ve been through with cancer treatments – interesting. She put needles around both elbows and ankles, and I think there might have been one on my left shin. I was very comfortable and relaxed throughout the appointment. I had been having terrible cramping in my right foot and ankle almost nightly that would wake me up and get me out of bed to do stretches and massage. The last time that happened was the night before my first acupuncture. I haven’t had any of those episodes since! The other change I’ve noticed is that I’m dreaming a lot more. I’m anxious to discuss those changes with her today.

We hosted a Super Bowl party with friends and family. The planning and preparations were fun, keeping me busy with games, a points pool, and Philly food (cheesesteaks with Amoroso rolls and whiz, soft pretzels, and Tastykakes). Everyone seemed to have a good time, and the Eagles won!!!

The first ever Melanoma Support Group meeting is in the books! Patients and caregivers came, and our program was well-received. We’re on our way! This makes me SO happy!

This week I’m on the dreaded PET scan diet for 3 days – low carb/low sugar. I’m always sick of eggs and strawberries (only fruit allowed and limited to 10/day) after these 3 days! However, I seem to have a better attitude about it this time around because I know I needed a diet reset. My weight has been slowly creeping up since Christmas, and this will start the decline that I hope to continue. Once I lose the 8 pounds I’ve gained since Christmas (already halfway there), my goal is to lose at least 14 more.

The PET scan and brain MRI are both scheduled for this week, and our fingers are crossed for no new surprises. As long as my tumor load stays low, we’ll continue to have hope and wait for the next research breakthrough that might finally get me into remission. Cheers!!

 

Recovery Mode

Earlier this week I met with my surgeon to check on the skin graft’s healing. The “islands” of skin coverage are larger. He wants me to leave it exposed to the air as much as possible so it dries. I’m also supposed to gently wash it with Dove and a washcloth to debride some of the gunk. He’ll check again in a month.

After that appointment I met with the Cancer & Exercise Specialist (exercise physiologist) working with solid tumor patients on a research study, “Exercise in All ChemoTherapy (EnACT)”. The purpose is to learn if one-on-one exercise counseling will help one become more active, resulting in fewer side effects, less cancer related fatigue, improved quality of life, and improved function. She’ll provide a customized exercise prescription to follow and chart at home. The program includes cardiovascular exercise, strength training, balance training, flexibility and range of motion, and relaxation and rest. It was a no-brainer and I signed the informed consent.

Thursday was my PET/CT scan with labs, oncology, and infusion (1st Opdivo only, w/no more Yervoy) also scheduled – a long hospital day. Bill had to wheel me to nuclear medicine because I was too weak to walk that far. I had been feeling ill since my last combination Yervoy-Opdivo infusion 3 weeks prior, so I wasn’t feeling very hopeful about the scan results. Immediately after the scan I scarfed down two granola bars (I actually felt hungry!), and then we checked into the Cancer Institute.

After the scan and check-in to the Cancer Institute, we met with the exercise physiologist. She reviewed my notebook with all of the PT exercises I’ve done, and tried out a few exercises with me. She’d prepare the exercise program and deliver it to me while I was in infusion later that day. She also provided me with some equipment to use at home to do my exercises.

Scan Results: Overall, big picture, the results were fairly better than I expected because there was nothing new. There were two “old” things that need attention. First is the right outer lower breast nodule that was 8mm and mildly FDG avid 3 months ago, and is now 9mm and moderately to intensely avid. It’s still small, but moving in the wrong direction, so it was recommended to follow-up with ultrasound. Second is a new intensely avid linear lucency in the right hip that appears as a fracture. Since the rest of the right hip showed slight metabolic improvement, x-rays were recommended to rule out a fracture.

Right Breast Ultrasound Results: Because it had been 6 months since my mammogram, which was clear, I had a 3-D mammogram and ultrasound. It was confirmed that it’s a small solid tumor, but cannot distinguish between breast cancer or melanoma. I’m scheduled for a quick biopsy on the 14th to help make that determination which will decide treatment options.

Right Hip X-ray Results: “No radiographic correlate for abnormality in the anterior column of the right acetabulum seen on PET/CT.” In other words, no fracture!

Because I was still suffering the side effects of the Yervoy-Opdivo combo infusion from 3 weeks ago, my oncologist withheld my Opdivo infusion – I’ll start in 2 weeks. He prescribed a higher dose (60mg/day) course of prednisone to try and break me out of this sickness cycle and end the diarrhea. Well, my appetite improved a bit during Thursday afternoon. I woke up Friday feeling a bit better and decided to wait and see if I would have another episode of diarrhea before starting the prednisone (I really don’t do well on it!). I’m still waiting for that episode, knock on wood, so I haven’t taken any prednisone yet. I’m certainly not ravenous, but I’m trying to eat a little more and actually feel hungry at times, and I haven’t lost any more weight. I’m also finally starting to get some sleep, which the prednisone would have fully robbed from me. So I think I’ve turned a corner and am improving. The exercise feels good and I think it has helped my mood and ability to sleep. At least I’m not a constant lump on the recliner anymore!

My thyroid function had a bit of a change from low functioning to higher functioning, so my levothyroxine dosage was decreased. Yervoy had effected it 3 years ago.

This coming week we meet with the radiation doctor to review all of these results. There’s no urgency in immediate treatment, so we’re inclined to let my body continue to recover a bit longer. We’ll see what he recommends and go from there.

I finally made the move to begin a melanoma support group at the Cancer Institute. The nurses put me in touch with two other women with a similar interest and they’re both onboard to help. We meet for the first time on the 13th. This is something I’ve been wanting to do for years, and it gives me a great feeling of purpose!