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.

Last Combo Infusion & Skin Graft Update

This past Thursday the surgeon checked my skin graft and said that there are islands of the graft that have taken. I still have to redress it daily but can drop the wet-to-dry step. He also said to let it air out as I’m able so it dries a bit. I’ll see him again in almost three weeks.

Thursday was my last Yervoy/Opdivo combo infusion (4th of 4). After this I’ll only get Opdivo every two weeks (easily tolerated and a much shorter infusion). I also got my flu shot. Although the only side effect I had experienced up till now was a slight decrease in appetite, that changed Thursday night with an entire lack of appetite and chills that kept me awake till 1:30am. Yesterday I still had no appetite and added a second dose of omeprazole to try and ease the belly bloat and constant burping (didn’t work). The chills started earlier around 5:30pm and I couldn’t get warm. We finally took my temp – 102.9F. I took two extra strength Tylenol and that helped a bit. This morning was the same story: bloating, burping, no appetite. Then my body added an episode of diarrhea – grrreat. These are all common side effects of Yervoy that I was fortunate to avoid through the previous three treatments.

To make sure I am doing all I should to control side effects, I talked to the on-call doctor. Sounds like I’m doing everything right except I should increase fluids. If I worsen or feel that I cannot manage at home, he suggested I visit the ED for lab work. However, without examining me, his best guess is either the Yervoy catching up with me, or the Opdivo (immunotherapy) ramping up to interact with the flu vaccine. Makes sense.

Tonight I took the Tylenol around 4:30 before I got the chills, and it seems to be helping. I do NOT feel horrible, just slightly under the weather. Chocolate Ensure, hot tea and a daily banana are sustaining me. I have survived much worse than this! 😁

Onward and looking to a better week ahead!

What a difference a month can make!

In my last post, I had just come home from the hospital with an accordion drain. I was a permanent fixture on the same chair with my leg propped up on a hassock and a pillow. I still had no appetite, very few drinks were palatable (especially water), and things were still unsettled in my abdominal area. I got back on the visiting nurses’ schedule and, besides taking my vitals, all they needed to check was my drain site and my foot. I was still losing skin from my leg and foot, but the foot had some major peeling going on, even at the pressure sore, the tips of each of the toes, and the sole. Vasolex was recommended, and my oncologist gave me a prescription – this ointment seemed to do the trick with helping to peel the dead skin away and also provided some pain relief.

The night after Christmas I moved from the chair to finally sleeping in my bed again, propped up on a mountain of pillows. I had to stay on my back due to the drain, and I needed my head elevated to keep my stomach somewhat settled.

I had the drain in until December 28th, and its removal made the biggest difference in my mobility (Note: having an accordion drain removed is a piece of cake – no pain at all!). I felt like I could be more mobile, and started trying to do a little more each day. I was finally able to take a shower. I was finally able to put on a pair of blue jeans which also made me happy, especially since they had more room in them than before the surgery. I was able to stand a little taller.

I made an appointment with a new primary care physician, just to have someone take a fresh look at ALL of me, instead of just my right leg. To combat my loss of appetite, she prescribed a 30-day trial of an anti-acid reflux medicine, omeprazole, in case I was having silent episodes. I’m near the end of the 30 days and, whether it’s the medicine working or simply more healing has occurred, my appetite has slowly come back. I’ve especially noticed it the last week and a half as I’m craving Indian food, soft pretzels, and chocolate (strange combo, I know!). Luckily, I’ve kept off the 20 pounds I lost. It was one of the worst ways to lose it, and I’m going to make it a positive by keeping it all off.

I went back to the surgical oncologist at U Penn on January 7th for a checkup. Nothing new from that visit. He’d like to see me back in three months.

Work started back up January 2nd, and I worked from home till January 8th. It has taken a while to get back into the swing of things and I feel my motivation building every day. I don’t get quite as tired as I did the first couple of weeks. I can honestly say that I’m happy to be back in the office.

This week I started the leukine therapy of self-administered shots (two weeks on, two weeks off for a year). The first night, Wednesday, I had severe chills and a fever that lasted about five hours. Thursday night I gave myself the shot at 7:15pm, took two Tylenol at 8:15pm, and was in bed with a heating pad at 8:30pm. That went much better. Last night I did the injection right before bed, took two Tylenol, and snuggled up with the heating pad. Either I slept through the side effects, or there weren’t any.  One good suggestion I read on a bulletin board is to use an ice cube to ice the area just before injecting. Since the hardest part is the needle stick, I’m going to try the ice cube tonight. I’ll have this all figured out in another day or two.

Starting next Friday I’ll work with an occupational therapist who is a lymphedema expert. I have three visits scheduled with her. I’m hoping that will begin to help relieve some of my leg swelling and pain. Walking is still difficult on uneven ground and uphill, but I’m doing steps and making progress. As the day goes on and my leg swells more, my limp increases. Control the swelling, and strengthen my leg are what I hope to accomplish with therapy.

My oncologist recommends a balanced diet, but I’ve been reading a lot about how diet might help me fight cancer. I’m eating and/or drinking antioxidants every day, and have become a yellow curry (tumeric) fan, and a green tea fan. I’m working on a perfect smoothie recipe to jump start my morning that includes organic baby spinach, yogurt, blueberries, and other assorted fruits. I’ve cut back on sugar. I’m still reading and contemplating more dietary changes, and have a Mediterranean diet book to help with that. I’m also reading Anticancer, A New Way of Life. I’ll figure out something that Bill and I can maintain over time and enjoy. Boosting my immune system is the goal.

So, a little over ten weeks since the isolated limb perfusion, and I’m finally feeling more like myself. I hope I keep feeling good during the leukine treatments (so far, so good). A piece of good advice I read is to treat this as a chronic disease, not a death sentence. I’ll just keep treating it, keeping all of my doctor appointments, scanning and testing, dieting, and hoping. Can’t say enough about a great team of doctors, fabulous family and friend support, and hoping!