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.

Final Countdown to Skin Graft

Today my neurosurgeon reviewed the August 15th brain MRI, and everything looks great! At least one part of my body got a clean bill of health. Of course, the lesion eliminated brain matter, and that’s gone for good so my left-side weakness persists without any change. However, I can get stronger and get an occupational therapist consult to see if there’s any hope for improvement with my left hand. Goal: gym membership after skin graft is sufficiently healed – middle of October?

I also had a wound appointment today. I successfully completed 70 hyperbaric oxygen therapy treatments, and they definitely helped. The wound specialist said I’m ready for a skin graft! She’d like to give the wound another week to continue growing granular tissue, so I think I’ll be scheduled for surgery in two weeks. Two years ago the operation took about an hour and a half, and I had a bolster dressing on for 5 days. I’m so anxious to have this wound from my March 10th surgery finally closed!

I’m encouraged by the newest drug, LN-144, to hit the FDA’s fast-track. However, it looks like a tough one to tolerate with just over half of the patients experiencing serious side effects. Even though they’re still recruiting, I don’t know if I’d be eligible since my tumor burden is low. I’ll definitely be discussing this with my oncologist in two weeks. He has another drug he’s considering as a plan B, so I have to get that name and check it out.

I’ve tightened up my diet a bit and want to visit a holistic doctor to build a better plan. While I know it’s extremely difficult to get into remission when you’re at Stage IV, I also know I’m not doing enough to get myself there. I must lose this steroid weight and get my diet and supplements figured out. I need a plan I can stick to for the long haul. So far I’m down 13 pounds!

Here’s to attainable goals, continued hope, and a lot of fight!

Summer Treatments

It’s been a busy summer and I just didn’t want to ruin the fun by using up any summer minutes writing about cancer. So I didn’t! Now, so much has happened, that I really need to get caught up here. I’ll try to keep it as short as possible. I’ll begin with a timeline and then fill it in with a few comments.

• June 8 through June 12 – low-dose radiation treatments to my lungs
• June 18 – oncology clinic and Keytruda infusion
• June 20 through June 27 – Topsail Beach vacation!!
• July 9 – oncology clinic and Keytruda infusion (and James Taylor concert!!)
• July 11 – 5K (I finished last) and swim party with all the kiddos
• July 16 – brain MRI
• July 19 through August 2 – our Alaskan adventure!
• August 6 – Keytruda infusion
• August 25 – PET scan
• August 26 – oncology clinic, femur x-rays, and Keytruda infusion

Coming up:

• August 31 – brain MRI and scheduling radiation
• September 1 – scheduling gamma knife treatment (probably)
• September 16 – oncology clinic and Keytruda infusion (every 3 weeks for as long as it’s effective)

The radiation treatments really knocked me back down to sofa duty, eliminated my appetite, effected my swallowing, and just had me feeling generally sick for a good two weeks. I still had no energy and no appetite at the beginning of our beach vacation, but the ocean and grandchildren have healing powers and I was back to myself by the end of the week. The vacation was fabulous, and so was James Taylor!

My family and a lot of friends did a 5K for melanoma research. I finished last, but I did it – pretty remarkable! It really shows that you have to keep moving, no matter what. I felt the effects for days, but it was worth it.

The July 16th brain MRI showed a new spot in the very same area as the one that got zapped June 4th. The doctor believed it was from the same incident and wanted to wait to see if any others appeared before he scheduled me for another gamma knife treatment. OK by us – it’s not something you want to do more times than necessary.

Our 2-week Alaskan adventure was one of the best trips ever! We saw such amazing scenery and animals/birds/plants and did so much! We had such a blast and, with all the walking we did, I felt stronger every day. On July 31st, I did another 5K, felt so much stronger, and saw a whale just behind the ship (and was NOT last!).

This week’s PET scan had mixed results, but it was an encouraging report overall. The difference in my body’s scan appearance from May 21st to Monday is quite remarkable and gives us a lot of hope! The lungs are much improved, but the pelvis lymph node and the tumor on my lower right leg are still active, and I have a new sclerotic lesion on the head of my left femur (thigh) bone. My oncologist explained that size and activity of metastases will increase as they’re being attacked by Keytruda, so I can expect to see a mixed result. He said that it’s important to stay the course, because he believes the treatment is working! He ordered x-rays to take a closer look at my femur and, after I told him I wanted my leg tumor removed, ordered radiation to attack it. The combination of radiation and Keytruda seems to increase effectiveness.

After Monday’s brain MRI and meeting with radiology, and Tuesday’s meeting to review the MRI results, I’ll know my schedule regarding radiation and gamma knife treatments.

I’m still following a vegan diet as closely as I can, and I have lost more weight (now down 40 pounds and a full dress size or two). I feel great and I love fitting into clothes I haven’t worn for years! Hope is a wonderful feeling!!

We have been through so many ups and downs, but keep each other strong. Thank you for your continued positive thoughts and prayers! They help to keep me strong when I’m struggling to feel well, and keep my hopes and faith high. I’m fighting strong because of you!!