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 “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!

Skin Graft Success!

I had my second appointment with the wound specialist yesterday (post-graft) to remove the modified bolster. The graft has taken! What a long road this was! Cue happy tears!! Now I need to do a daily dressing change: xeroform cut to fit in the wound, damp 4×4 fluffed, dry 4×4 fluffed, ABD pad, gauze wrap, compression sleeve. I need to send her a photo on Friday and then a week later just to be sure nothing funny is happening with the site. Next up will be a visit to the surgeon in two weeks or so. The pain level will continue to drop as the graft heals. I’m allowed to increase my activity level as tolerated which will increase the blood flow to the graft region and continue the healing.

The donor site is completely dry but the dressing has not yet begun curling at the edges. As the skin below scabs, it will push the dressing off. It’s still a bit tender, so I continue to wear baggy shorts.

Yesterday I made more juice from twelve carrots, four apples, one lemon, and a generous slice of ginger which made three pints. I drank half a pint of juice, a fruit smoothie (blueberries, kale, ground flax seed, banana slices, almond milk, and Activia), and a mug of herbal tea. Last night I woke up with severe indigestion! What a night! I’m back on omeprazole and will take it easy on my healthy drinks till my body can adjust gradually. So far today (it’s noon) I’ve only had a cup of coffee and water, and I’m not hungry at all. One step at a time!

Bolster Removal

Yesterday was one week post skin graft and time for the bolster removal. My blood pressure reading did not reveal the nervousness I felt! Two years ago a bolster removal was so painful I felt faint, so I had them recline my head so I couldn’t watch. There was definitely white-knuckle pain as the staples were removed, but I got through it. Once the wound specialist said the graft looked really good, I asked to sit up so I could see it too. It looked great! The right edge was a bit loose, so a modified bolster dressing (no stitches or staples) was applied and is to stay in place till my appointment next week which will give it more time to heal. Directions are to keep it still and raised till then.

I juiced by myself this week (no veggies escaped the chute!) using nine carrots, three apples and a generous slice of ginger. It made two full pints which I’ve already finished. I liked this better than the first formula. With another five-pound bag of organic carrots in the house, I’ll be making more juice today. I almost crave it and definitely miss having it in the refrigerator!

Moving forward: Today I hope to complete an outline (to do list) to take what I’ve learned so far in the Chris Beat Cancer modules that I’ve just completed, and in the book Brain Maker: The Power of Gut Microbes to Heal and Protect Your Brain – for Life. There is a lot of new information in them and I need to figure out what makes sense for me right now. With another PET/CT scan coming up in November, October is a good time to get started and see if I can at least incorporate changes that reduce inflammation and maybe even help restore more function to my left-side. I have an appointment at the Anticoagulation Clinic on Monday and want to discuss increasing my servings of dark green veggies, Right now I’m only allowed three servings a week and that’s not going to be enough going forward.

I ordered and received Sir Jason Winters teas and have already added them to my daily hydration. I learned that adding lemon to your herbal tea increases absorption! I’d like to keep some cold brewed in the refrigerator so I’ll drink it during the day. I had a cup before bed last night and was up till 2:00am!!

I’m still waiting for clearance to start back at the gym and I can’t wait!

Thanks for all prayers, good thoughts and sprinkles of pixie dust to continue this healing!