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.

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.

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!

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!!

Treatment Plan Continues

I had my first radiation treatment last week, and will have my 2nd Yervoy infusion and last radiation treatment this week. The planning sessions (1 consultation and 2 planning sessions) took longer than the actual radiation treatment. It was decided to radiate the lung rather than the leg because it was easier to be precise aiming for the lung tumor (long story). I’ve had no noticeable side effects from the radiation, and am experiencing only occasional, mild stomach/abdominal side effects from the Yervoy. So far, so good!

We’ve got to enjoy our grandaughter’s 6th birthday party with all of her school friends, our great niece’s baptism, and Frozen on Ice with two of our grandchildren (with a fun-filled overnight stay). That’s just two weekends worth of good times!

We started on a 6-week walking challenge through work last week, so I’ve been doing more walking. It feels SO great to be outside doing something active. Today we took a car ride up the river to Fort Hunter, then continued to Susquehanna University where we had lunch at BJs. From there we headed to Peters Mountain and hiked a little on the Appalachian Trail (AT). We plan to go back to hike a bit longer with better preparations. Heading down the mountain, we stopped at another AT crossing and walked around the stream that flowed through the area. Heading towards home, we checked out Marquette Lake which looked like a great spot to take the grandkids fishing. Our last stop was Memorial Lake next to Fort Indiantown Gap, which is a larger lake and also looks like a good fishing possibility.

It was a gorgeous day, and I’m happy to feel good enough to be active and enjoy day trips like today’s.

First Yervoy Infusion

This afternoon was my first Yervoy (ipilimumab) infusion, and it went quite smoothly. Yervoy is classified as a monoclonal antibody which is a “targeted” cancer therapy. Because it targets only specific cells, it may cause less toxicity to healthy cells, rather than chemotherapy that can be toxic to all cells.

When I had my interferon infusions at my first cancer center a little over 6 years ago, we all sat in reclining chairs in a big circle in a large room. At Hershey, I have my own little “room” with a curtain, a bed, small table, closet, and a couple of chairs. There are windows to a courtyard where I could sit outside. I didn’t want to be in the bed, so it was fine for me to sit in the chair and, when a recliner became available, I was moved to that room. I lost the view outside, but was much more comfortable in the recliner.

I had my lab work at 2:45 and went straight from there to the infusion lab, so I was early for my 3:15 appt. Till the room was ready, the paperwork signed and faxed to the pharmacy, and the IV started, it was close to 4:00. It was a 90-minute infusion and then a 10-minute flush, and we were out of there around 5:45.

Yervoy has side effects (most common are fatigue, diarrhea, and itching) that, if I get them, probably won’t show up right away. Some side effects could occur weeks or months after I finish the treatment. All I was given prior to the infusion was ibuprofen – no Benadryl or anti-nausea meds – and I feel fine. I actually could have taken my laptop and gotten work done rather than watch mindless daytime TV and lose a few more of my dwindling sick leave hours. Now I know. Next infusion is in 3 weeks.

Have I mentioned how happy I am to be at home?!

Ending one treatment and beginning another

It’s been quite a journey since I received my first pathology report of malignant melanoma back in December of 2007. I’ve had multiple surgeries including a sentinel lymph node mapping and biopsy and lymph node dissections, 19 treatments of intensive interferon, isolated limb perfusion at U Penn, 9 months of leukine shots, and finally high dose interleukine 2 (IL2) with temozolomide (TMZ). I made it through two courses of the IL2 and TMZ and was scheduled to be readmitted to the hospital for the third course to begin tonight. However, for the second scan in a row my disease is stable, and this treatment is too harsh to only get stable results. Stable is great because it means the cancer’s progression has been stopped, and Monday’s scan even showed that a tumor in my lung got a bit smaller and has less intensity (from black to gray on the printout). But it’s still not good enough to go through a third course. I feel as though I’m a bit too happy about not having to go through the third course, but it really was rough and I was quite stressed about having to go back into the hospital. It’s quite freeing to be sitting at the kitchen table with the screen door open right now!

The next step, which has been plan B for awhile, is to begin radiation on my leg and go through four infusions of ipilimumab (Yervoy). The infusions will be three weeks apart and will last about 90 minutes – all out-patient. That begins September 29th. I’ll know more about the radiation treatment and schedule after the consultation (still to be scheduled). Although the Yervoy has side effects, they’re all manageable and nothing like the IL2. It’s expected that I’ll be able to work through it all and feel good. I’ll get scanned about six weeks after the last infusion, so that would be sometime in January.

The oncologist explained the IL2 and TMZ as pressing the gas pedal down with the brake on. The Yervoy will release the brake. He has been administering Yervoy for about 3 1/2 years, and has seen Yervoy able to be more effective after a patient has gone through IL2. So I’m going into this treatment with an advantage. Add the radiation into that, and we expect to knock the cancer out! My volume of cancer remains small, so this is doable!!

We now have a new plan B and C, so if any cancer cells are left after this treatment, there are still more options. It’s nice to have options! My surgical oncologist told me that all I need to do is live long enough and the right drug will come along. Another new drug just received FDA approval last week (pembrolizumab – Keytruda), and the research continues for even more effective therapies.

Except for the IL2 treatments, I had a great summer and feel terrific. We feel immense gratitude for all the love and support we continue to receive – it makes ALL the difference! Thank you!!