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!

Last update for 2014

It’s been two months since I last posted. When I’m feeling well, I don’t like to post to the blog because I don’t want to think about infusions, doctor appointments, scans, etc. However, I also don’t like to post when I’m not feeling well, because I don’t like admitting that’s the case. I had a bit of both going on the last two months, so I kept putting off the next post. Enough procrastination! I want to start 2015 anew and put all of the 2014 cancer stuff behind me, so here’s the update.

I finished my 4th and final Yervoy infusion on December 2nd. At my oncology appointment that day, I learned that my thyroid was functioning a bit on the low side and got a prescription of levothyroxine to take care of that. I had only started feeling tired, so this was a quick and easy fix. My doctor had previously said that this might be a side effect I would experience, and had actually seen it as a positive thing since other patients who had the thyroid effected seemed to also have the best results from the Yervoy. So YAY! However, I started with a headache during my 3rd infusion on November 11th, and it never went away. He ordered a brain MRI right away since melanoma can be so darn tricky. Fortunately, the scan was clear but did show that my pituitary gland was enlarged and that is what was causing the constant headache. I was put back on prednisone, and had relief within hours! How wonderful to be headache free!! Of course the prednisone also helped with the rash I had been fighting since the 1st infusion. (Side note for those suffering from the rash: My dermatologist recommended “soak and smear” for treating the whole body rash. Soak in plain water for 20 minutes, get out of the tub, don’t dry off at all, and immediately smear steroid cream over your body. Put on an old pair of PJs. Repeat nightly as often as needed. I saw relief in 4 days.) The prednisone made me ravenous and full of energy, so I gained back the pounds I lost after being on prednisone the last time but also accomplished a lot every day being the energizer bunny. Four or five hours of sleep a night was about the max. Now I’m down to only 1 prednisone a day for another week, so my appetite and sleep have finally normalized. All in all, the side effects were doable and I was able to function throughout. When I say function, I mean travel, babysit the grandkids, go out to eat, take long walks, etc. We didn’t sit very much!

I’ve made some big changes to my diet, moving away from most meat and really amping up the vegetable intake and using mostly organics. It hasn’t been a difficult change at all, and I’ve been surprised at how little I’ve missed meat. I also think eating more veggies makes me feel better. I make my own green smoothie in the morning, and I’ve found that’s really a great way to start the day. I love Indian and Thai cuisine, so I often have that for lunch. I’ve tried some new recipes (mostly soups so far – mushroom barley and tomato basil), and want to start the new year trying some more new dishes. I enjoy cooking when I feel well and am not exhausted after work. I’m planning to start the new year with Whole Living’s diet recommended by Ann. It looks like the perfect way to reset after the crazy holiday eating.

Next week I have my second appointment with the only integrative medicine doctor in the Hershey Medical Center system. We’ll review the blood work he requested and see what recommendations he has for me. I also contacted the Block Center for Integrative Cancer Treatment, and am gathering up the information they have requested so I can schedule a visit there in a few months. Their book, Life Over Cancer, has been a great resource for me. My oncologist and his nurse are on board!

My next scan is scheduled for January 27th. If I’m finally in remission, I’ll be shocked. I’m actually not expecting to hear that – maybe I’m just trying to protect myself from being disappointed. It’s been two years since I’ve been in remission and it hasn’t been all doom and gloom. Except for the hospital stays for the IL2 treatments and recovery, life has been really fantastic! My plan is to treat my melanoma as a chronic disease and keep working to prevent it from spreading. It’s what I’d have to do even if my scan is clear. I need to make my body inhospitable to cancer, which means I still have more changes to make to be the healthiest I can be. That’s my New Year’s resolution! Here’s to the healthiest you can be too! Thanks for all of your support during the past year – we couldn’t have done it without you!!