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!!

 

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Oh January!

It has been over a month since my last post, and I could just write “ditto” and be done! My Opdivo infusions are still being withheld due to an elevated liver function, I’m still exercising, and the new Melanoma Support Group is still on track for its first meeting February 6th. I’ll fill in a little bit (or a lot!).

The highest number for my liver function was 362 on November 16th. It dropped weekly until December 12th when it peaked again at 295, a lower peak. Then it dropped weekly until it peaked again on January 18th at 197, an even lower peak. Last Thursday, January 23rd, it dropped to 82. Normal is between 0 and 33. I’ll have it checked again this Tuesday – bets on a peak or lower? Of course my prednisone dose is continually adjusted based on the number – back up to 60mg/per day when the number peaks, and lower dosages in between the peaks. Right now, since the number dropped, I’m at 20mg/day. The goal is 10mg/day with a “normal” liver function to make me eligible for infusion in February.

Christmas happened since my last post and it was wonderful! Anytime we have our family together, I’m happy. My taste buds weren’t working, but I prepped, baked and cooked anyway. I had so many cookies in our home! The prednisone kept me moving! We went to the library with the grandkids to see the train display, and got to spend quality time enjoying them. It was fun watching how much they enjoy playing with each other. We even got to be part of a new puppy adoption which was the sweetest thing ever! Welcome to Libby, our new grandpuppy golden doodle!

We also took a short trip to Topsail and Raleigh to celebrate a grandchild’s 8th birthday. We stopped in Salisbury on the way down to visit with Steve and Em, and enjoyed our new favorite Italian restaurant only minutes from their home. The beach is a magical place of healing, except when a stomach virus goes through your son’s family! Our granddaughter was sick just before the trip, and then our son got sick that Sunday, our grandson Sunday night, and our daughter-in-law on the way home Monday. We were still able to enjoy each other and the puppy, the sand, ocean sounds, shelling, seeing dolphins,  finishing a puzzle, reading, and watching the Eagles win! Bill and I made it home Wednesday before we both got a mild case over the next two days.

I’ve kept up with my exercises except for two weeks when I felt too sick – sinus infection (prescribed Augmentin but given generic – Amoxicillin) and stomach virus. I had to call to have the prescription extended after 10 days because I still had no sense of taste, my teeth still hurt, and I still had ear pain and sinus pressure. The extra 4 days ran out, and it’s still not gone, but better. I think doing a sinus wash nightly is helping a lot.

I met with the exercise specialist, and she suggested that I just do one exercise per day instead of trying to do the entire set. What a difference that made! My mindset changed from “I can’t do this because I don’t feel well enough/I’m too tired/I have too much pain” to “I can do this one easy thing.” After doing that “one easy thing,” I was often able to do one more, and then one more. Now I’m doing several exercises each day and working back up to the full set every other day. The one thing I haven’t been doing is walking – first it was too cold outside, the sidewalks were snowy/icy, and then too much pain. I guess I’ll have to join the mall walkers!

The exercise specialist also encouraged me to try a Tegaderm dressing on the deep scab that remains on my right leg wound. This clear dressing basically seals the wound and softens the scab. She used to play softball and always had painful brush burns that healed by using this dressing on them. The scab is quite painful and is taking forever to heal, especially with the prednisone. So I started Tegaderm, showering and changing the dressing when it becomes “goopy.” I use the handheld shower attachment and really spray the heck out of the scab. Then I blot it dry with a 4×4 and apply a new dressing. It’s working!! The pain has lessened and the scab is slowly softening and reducing in size bit by bit. March 10th will be a year since the surgery that created the wound! What a journey!

I was surprised by a lot of right hip pain this past Tuesday and Wednesday. I blamed it on over doing it on Monday and causing extra lymphedema. Knowing I shouldn’t take Tylenol because of my elevated liver function, I called my oncologist’s nurse to learn if there was anything I could take to get some pain relief. She said that Tylenol will mask the pain, but Aleve or ibuprofen will actually lessen the inflammation causing the pain. I’m taking two Aleve a day and it has helped tremendously!

I’ve started back into crafting. Being creative helps my mood. I was actually able to do some cross-stitch on a plastic canvas. It’s not as neat as I used to be able to do with two hands, but it’s not horrible. I saw a collage another patient completed using the greeting cards she had received, so I got out my bags of cards and cut out inspirational sayings, birds, flowers, dragonflies, sunshine, and hand-written messages of love, encouragement and support. Next I plan to arrange them on a canvas so I can look at it and feel the collective love! I’ve also painted more rocks and just collected even more to start painting this week. After the threat of snow is gone, I’ll place them around the walkway at the Cancer Institute. I also have a small Christmas tree I want to make with my daughter using my mother-in-law’s jewelry. She loved Christmas so I hope this will become a fitting keepsake.

I have my 3-month scans scheduled for February 9th, and infusion (hopefully!) for February 13th. As usual, there’s a lot of hope focused on the results! Decisions will be made on potential radiation at that time.

In the meantime, I’ve set up a new physical therapy consult with our neighbor, and I’m going to try acupuncture for the first time this week. Something is bound to help! Onward!!

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 2nd 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.

Recovery Going Strong

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!!

 

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!

Tests, Rehydration & New Meds

On Thursday I had an x-ray series of my abdomen, looking for a blockage, and turned in my stool sample kit. I learned fairly early that there were no red flags in the x-rays, but the cultures would take a bit longer. Thursday night was a turning point: could I make it till morning and try to get an appointment with my primary physician, or should we make the trip to the ER? After a week of feeling ill with no relief I was getting scared. I try to not let every new ache or pain have me think the worst (spread of cancer), but this was wearing me down. I could see and hear the worry in my hubby too. We decided to wait. (In hindsight, I need to lose my fear of the ER and go. They’ll get the tests done and get answers. Good advice I received was that the earlier you go in the day the better. We probably should have gone Wednesday morning.)

Beginning when the doctor’s office opened at 8:00am I called every two minutes until someone answered. I was able to get an 11:00am appointment. The physician assistant I saw was excellent. She had already viewed my x-rays and checked on the three stool tests – negative for c diff, and others were still pending. However, based on the white cell count, she didn’t expect any problems there. My blood pressure was normal but my pulse was elevated. She took my blood pressure again, first seated and then standing, because she suspected dehydration. After listening to my heart, lungs, and stomach, and pinching the skin on the back of my hand, she recommended that I get IV hydration and Zofran (anti-nausea med). She was going to have an ambulance pick me up and take me to the ER, but we asked if it was possible to have it done in the infusion room at the Cancer Institute – a place where we knew we’d feel more comfortable and where we knew the nurses. She coordinated with my oncologist’s PA and they made it happen – very grateful!

Kudos to the nurse who had to start an IV in dehydrated me! One stick and done! The fluid was cold, even with a heated blanket folded over my arm. Two hours later I was happy to sit in our sun-warmed car and head home. I was able to sit upright with less stomach discomfort already. I slept in our bed, actually slept!

This morning I was still tired but knew I had to get up to get some food in my stomach so I could begin a short course of prednisone. I started with Zofran, then drank an Ensure and ate two graham crackers, followed by the prednisone. Still feeling cold I snuggled on the recliner under a blanket and fell asleep. Around lunchtime I ate a small dish of Jello and drank some Gatorade. Mid-afternoon I had some soup. I still have no appetite at all, but I know I need to stabilize my weight and stay hydrated.

So, finally some improvement! I have a way to go to build up my strength (yet again!), develop an appetite, and lose the diarrhea, but today was a good start.

Yervoy Side Effects

From https://www.yervoy.com/side-Effects: “The most common side effects of YERVOY include tiredness, diarrhea, itching, rash, nausea, vomiting, headache, weight loss, fever, decreased appetite, and difficulty falling or staying asleep.” I’ve already had the itching and rash side effects, so I guess that left all the rest for after the 4th and final treatment. Luckily, knock on wood, I haven’t been vomiting. What I still have since Thursday night are tiredness, diarrhea, nausea, minor headaches that come and go, fever, decreased appetite (as in no appetite) with corresponding weight loss, and difficulty falling or staying asleep. I’m either sweaty or chilly, especially throughout the night, which might be fever-related?

Last night I pulled out Dr. Block’s book, Life Over Cancer, to search for some solutions. To offset the diarrhea, it suggests to drink lots of filtered water to stay hydrated. Sip small amounts of clear, room-temperature liquids throughout the day. To maintain the electrolyte balance, eat fish, bananas, and potatoes, as good sources of potassium, and crackers and pretzels because of their sodium content. Diarrhea-fighting foods include rice porridge, tapioca, barley broth, miso, and potato-based veggie soup. Some other foods that might help are white rice, cream of rice cereal, refined white flour products such as white bread and noodles, eggs (not fried), low-fiber veggies (peeled cucumber, peeled potato, peeled zucchini, mushrooms), and low-fiber fruit (applesauce, grapes, peeled peaches, bananas, mandarin oranges, tangerines, melons, mango, plums). Bananas and applesauce are the fruits of choice because they contain pectin. Eat small, frequent meals and snacks.

I am waiting for a callback from my oncologist’s nurse to see if there is anything else I can do to offset these side effects besides chewing a GasX tablet four times a day and taking Omeprazole. . . After a few back and forth messages, orders are now in for me to pick up a “kit” from the lab tomorrow to provide them with a stool sample, and to get an x-ray to rule out any blockage. In the meantime, I’m wondering if I might need a higher dose of my thyroid medicine (initially needed after taking Yervoy a few years ago). I’m going to message my oncologist now in case I could have blood taken while I’m there tomorrow. It’s time to get to the bottom of this so I can begin feeling better.