Yervoy Side Effects

FromĀ 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.

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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! šŸ˜

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!

Two Days Post Skin Graft

Two days post surgery: Last night I was upstairs preparing for bed when I noticed a spot of blood on the floor. After cleaning that up I needed to find the source – wound or donor site? The wound had some drainage, but no blood, so I dressed it with a clean ABD. Then as I unwound the ace bandage from my thigh I saw that this was definitely the source. The plastic sticky covering was leaking at one side. I needed Bill to check on the post-op instructions for me since they were downstairs. As the most devoted partner in all of this, he left the Penn State game to come to my aid! The instructions said in case of leakage to remove the plastic covering and replace it with Xeroform. Now how many homes have a supply of Xeroform at their disposal?! Uh, that would be us!! It sounded familiar and, after looking it up online, I had Bill check our past leftover surgical supplies to look for a foil packet and there it was! I cleaned up the site with 4x4s, applied the Xeroform, and we wound my thigh back up with the ace bandage. Done!

Pain meds: Yesterday I dropped the Motrin after the morning dose and started back on my “normal” dosage from pre-surgery. That worked out just fine yesterday. Today, whether it’s from bothering the donor site or just typical two days post-surgery happenings, the pain is a bit less tolerable. I will probably add the Motrin back in at my 3:00 dosing time – no need to be a martyr!

Juicing: The idea is to increase my servings of organic fruits and veggies without chewing all day. Today Bill and I used the Breville Juice Fountain Plus for the first time. I used a juice formula fromĀ https://www.chrisbeatcancer.com/ ( all organic): 5 carrots, 2 celery stalks, 1 small red beet and its greens, slice ginger root, 1/2 lemon (or lime), 1 apple (calls for Granny Smith but the store didn’t have any organic). It made just over a pint of juice. Two ingredients I was missing were turmeric root and a clove of garlic, but it was a good start. I tasted the beet and celery most strongly, so I think I’ll add more carrots and apples next time. Also, since I have to peel the lemon for this juicer, I might use a whole one next time. The juicer was easy to clean up, but it’s definitely a two-person operation since I can only use my right hand. I put handfuls of the fruits/veggies in the chute and Bill put the chute cover on ( after we blasted a red beet chunk into the air!!). I’ll double or triple the recipe next time (tomorrow?) so I have juice for a few more servings (days?).

Another juicing recipe I’d like to try is the Gerson Carrot Apple Juice: equal parts carrots and apples. Three large carrots equals one apple. I’ll need to find organic, or at least no-spray, Granny Smith apples since the tarter fruit is best.

I did a lot of standing for the whole juicing process, so I’m back to sitting mode with my leg raised to prevent swelling that could negatively affect the graft. Bill is outside being a lawn warrior and I wish we could be working side-by-side. I absolutely love working outside in my flower beds! Hopefully next year will have me back doing more of the things I love! Dare I hope for long walks, swimming and gardening? I’m trying my very best!

Skin Graft Done!

Yesterday we had to be at the outpatient surgery center by 7am. We had to wait over two hours till they wheeled me back to the OR. The surgery took about an hour, as expected, and the surgeon was very happy with the result. The donor site was my right thigh again, 3rd donation from that same area. It’s wrapped in an ace bandage till Monday, and I’ll leave the dressing underneath it in place as it dries. Normally this is the area with the most pain – feels like the worst brush burn ever. However, I have no feeling at the surface from the middle of knee on up due to the lymph node dissection years ago. The surgeon said he took a very thin slice of skin and I guess that’s why it’s pain-free so far. What an unexpected blessing!

The wound/skin graft is painful and I’m keeping it tolerable with alternating Tylenol and Motrin every 3 hours while I continue my normal pain meds. When I woke up in recovery, the wound had the bolster dressing and nothing else on it – just a yellow dressing stapled around the wound! We were concerned with potential bumps or scrapes, especially getting in/out of the car and getting dressed/undressed, so the surgeon added an ABD and ace bandage for protection. I took the ace off this morning and taped the ABD in place. I must keep my leg elevated and still till the bolster removal on Friday. I’m on an antibiotic, Keflex, for a few weeks as added insurance that nothing interferes with the graft taking hold.

This morning I have a few windows open to enjoy the fresh air until it gets too warm. The birds at the feeders are entertaining me, as well as our resident chipmunk and squirrels. Murphy the cat is keeping me company till Bill gets home from work.

I made a healthy organic butternut squash soup with onions, carrots, and apples the night before surgery so I’d have lunch ready for the week. There was a lot of chopping and slicing involved, so I was very thankful for Bill’s offer of help! He took over the cutting board and went to town! The cinnamon makes it taste like Fall, and the cayenne gives it a bit of a kick. Yum! Tomorrow we’ll try juicing with our new (used) Breville juicer!

Even though I don’t feel like reading or watching TV, I guess that’s what I have to keep me entertained this week. I might try doing cross stitch or painting more rocks for the Cancer Institute’s walkway. I can do upper body exercises and figure out a seated yoga routine to do daily. Lots of possibilities to keep me seated and my leg elevated!

Onward to a successful graft healing!!

Learning Never Ends

It’s only Wednesday, but I’ve already done so much learning this week! It has raised a ton more questions, which is a bit frustrating but also motivates me to learn more. It all started with news from the Melanoma Institute Australia on their clinical trials of COMBI-AD: Dabrafenib (Tafinlar) with Trametinib (Mekinist). It’s a BRAF inhibitor, and that’s the tumor gene mutation I have. Most research is done on the NRAS mutation because it’s more common. They’re also doing a trial called CheckMate 238 which compares Nivolumab (Opdivo) to Ipilimumab (Yervoy). Those are the two drugs I’m currently taking.Ā “These clinical trials show we now have ammunition to prevent melanoma spreading and progressing, which until now was a critical area of disease behaviour where we had no control,” Professor Georgina Long, the institute’s conjoint medical director, said (http://www.sbs.com.au/news/article/2017/09/11/we-now-have-ammunition-breakthrough-fight-against-melanoma).

There’s another study, KEYNOTE-022, in Phase 2 that is testing Pembro (Keytruda) with the addition of Ā Dabrafenib andĀ Trametinib: seeĀ http://ascopubs.org/doi/abs/10.1200/JCO.2016.34.15_suppl.TPS9596Ā andĀ https://clinicaltrials.gov/ct2/show/NCT02130466. So, thank goodness for continued research!

Also this week I started watching Square One modules fromĀ https://www.chrisbeatcancer.com/. Module 1 opened last night and a new one (10 modules in all) opens each night at 9pm and is only available for viewing for 24 hours. Module 1 basically boiled down to this – your body (and your diet, lifestyle, environment) created cancer and your body can heal it. Your choices matter. Make your internal terrain inhospitable to cancer. You are what you eat. There’s no magic bullet – small changes will not lead to big results. You need to commit to at least a 2-year hard core life change to heal and reduce the risk of recurrence.

In addition to Chris’s testimony (13 years cancer-free), there are other patient testimonies on his site with links to resources, products, etc. I was especially interested in the story of Bailey O’Brien who beat Stage IV melanoma (also my stage). She has her own website here:Ā https://www.baileyobrien.com/. After she reached a dead-end with traditional therapies, she looked into alternative therapies and traveled to Mexico for treatment. She is now 6 years cancer-free! I have followed her links to Gerson Therapy and Coley Fluid. Although she went to CHIPSA hospital, it closed in 2013 and has since reopened under new management. She seems to be recommending the St. Andrews Clinic now, also in Tijuana, Mexico.

Other resources I’m still reading include:

http://gerson-research.org/

Beta Glucan (supplement) – supercharges your immune system?

The Truth About Cancer

Believe Big

I’ll have a few new questions for my oncologist next week, and then it might be time for a phone consult with the Block Center. I think it’s been 2 1/2 years since our initial visit.Ā Here’s to learning!