Needle Biopsy Results & HBO

This week we received the needle biopsy results of my left pectoralis muscle – positive for melanoma. This was devastating for about 24 hours and then we got ourselves back into fighting mode. We met with my oncologist yesterday, and the decision was made to wait until after my next PET scan. Because this met is so deep within the muscle, it would be like having a lumpectomy if it was to be removed surgically and would involve a hospital stay. It’s possible to have radiation, and that doctor is also being consulted along with two surgeons by my oncologist. We’re waiting to see if it’s an isolated tumor or if more pop up in the next three months. This way, we’d do the surgery once and get them all. It seems like a logical decision. In the meantime, I’ve already received a call that my radiation doc wants to schedule a consult.

My oncologist also made changes to my prescriptions to help me manage the pain which hasn’t lessened. I now have an extended release drug, something to help my left knee, and am continuing with all of the short-term drugs I’ve been on. Hoping something works!

I had a different experience in the hyperbaric oxygen therapy (HBO) session today. It was my 9th “dive” and as soon as the nurse turned on the pressure I realized that I couldn’t pop my left ear. The pressure was building and I was beginning to feel pain. I tried everything to pop it with no luck. The nurse reversed the pressure and got me out of the chamber as quickly as possible. The doctor was there to check my ear and he announced it as a “T1”. He said there was redness and even a little blood. I had to be sent home with instructions to pick up some Afrin and use it at bedtime. I also have to take it along to treatment tomorrow. I had some congestion last night, but my ears felt fine this morning. Now, my left ear is still closed. If I can’t resolve this, I’ll need to get tubes in my ears. Sigh.

Over the weekend I had to switch to using Dakins (bleach solution) in the dressing because the pseudomonas was back in my wound. Tuesday morning I learned that Dakins kills granular tissue! Last night I stopped the Dakins and went back to using the Mesault (sodium chloride). I’m hoping my dressing change tonight shows that it was the right move. Two steps forward, three back!

Since I’m running out of insurance-covered physical therapy sessions, today was my last session for my left knee. It’s still giving me problems (patellar tendonitis), so I’m going to request a referral to an orthopedic doctor who might be able to recommend a different brace that works better with my knee but still helps with foot drop.

In happy news, Bill and I were able to pull off our daughter’s nursing graduation party! Of course, Bill did 99% of the preparations outside and inside and I did the planning. Our daughter-in-law and my mother were HUGE helps in the kitchen making delicious food and keeping the kitchen in tip top shape! We couldn’t have done it without the extra help!! Our daughter’s friend, Courtney, did the decorations which made it look like a party. Our youngest son brought along his amazing mac and cheese and was part-time grill master. Our oldest son helped get the grill back on the deck, made grocery runs, picked up my parents, kept an eye on the kiddos, and helped behind-the-scenes. Our son-in-law was an amazing lifeguard. I still ended up being on my feet too much, but it was worth it for a really happy, celebratory day!!

Slow Progress Continues

Since my last post, my hubby and I were able to take the most wonderful vacation which we both needed. We began with a stop in Raleigh and then headed to Savannah for two nights. We visited Clearwater and the Phillies training camp, and then spent almost two weeks on Captiva Island, FL. Talk about paradise! The weather, flowers, beach, bird-watching, and shelling were all spectacular! Being able to spend time with friends was so much fun! Heading home, we stopped in St. Augustine for two nights, and then back to Raleigh and finally home. I’ve had fun doing crafts with all of my beautiful seashells. Having a break from being a cancer patient/caretaker was most welcomed!

Reality didn’t waste any time though with infusion on March 9th followed by out-patient surgery on March 10th which finally removed the soft tissue tumor from just below my right knee. The surgeon showed me the tumor, and it looked like a perfectly round brown marble. Good riddance! He was able to fold the skin edges and close the C-shaped incision with stitches. However, because the site had been previously radiated, the skin was still brittle and the blood supply less than ideal. All of the skin died and I was left with a gaping hole with necrotic (dead) tissue. It seems that no one expected that outcome. The wound is a good candidate for the vacuum pump I previously used, but I refuse to go through that horrible ordeal again. Fast forward to today – I have gone through three rounds of antibiotics (two of Keflex/Cephalexin and one of Bactrim), had stitches removed, visited dermatologist who took a culture and suggested Duoderm as an alternate (easier) dressing, had follow-up with surgeon who said “no” to Duoderm because it keeps the wound too wet, and had visit with wound specialist who said hyperbaric oxygen therapy might be an option (she’s asking my surgeon and oncologist). I have to do twice daily wet-to-dry dressing changes which includes removing the dressing, washing the wound, blotting dry, applying Santyl ointment, and redressing. They all agree that this is going to take months to heal. It has been quite painful and has impacted my mobility (limping on both sides now). Finally unable to take the constant pain this week, my surgeon recommended alternating Motrin and Tylenol every three hours which has provided enough relief to make it bearable and allow me to sleep better. I’ll revisit the wound specialist next week when she’ll debride (remove) the dead tissue to promote healing. Fun times!

After our vacation I had two additional physical therapy sessions. The therapist was impressed by how much my exercising in the heated pool at Captiva Island had improved my side-stepping, high steps, and especially walking backwards. Because I was halfway through my insurance-covered visits for the year, we decided to discharge me and I joined their gym. Now I go to the gym at least 2-3 times a week and have already increased weights and reps, and have increased my speed on the treadmill from 1.2 to 1.8 mph. However, I still have a death grip on the handles! I walk 4/10 of a mile, and then do stretching and the various machines. I’ve noticed the biggest difference in the strength of my left arm and shoulder.

Yesterday I had my oncologist check my left knee because of continued and worsening pain with steps and walking. There also appears to be some fluid buildup. I’ve been hyper-flexing it for 9 months now, so it’s no surprise that it’s sore! He suspects patellar tendonitis and suggested a knee support and icing. I think I’ll also try eccentric decline squats at the gym tomorrow and ask about using the stationary bike again. I guess I have to try and do even more to strengthen my quads.

My garden is started and the spinach, carrots, and basil have already sprouted. It takes me forever to do the simplest things, but I’m persisting and will finish planting this weekend (red beets, zucchini, snap peas, lettuce). I still need to buy some tomato plants. I’m not planting any Swiss chard this year (pretty but hated it!), and I still have kale and butternut squash in the freezer.

I’ve been terrible with my diet ever since gaining so much weight on the steroids. My plan is to do a better job with meal planning, eliminate added sugar and carbs, drink more water, and start losing this weight. It will be easier once the carrot cake I baked for Easter is gone! If I can steadily lose 2 pounds a week, I’ll be happy.

My next brain MRI and neurosurgeon follow-up is next week, and then my next PET scan is May 11th. These two visits will build the summer plan to continue the fight.

New Challenge

Well, so much for the trifecta of adding the T-vec injection to my radiation and Keytruda treatments! I’m glad I gave it a go, but I only made it through two T-vec doses because I ended up with flu-like symptoms each time that took almost two weeks (each dose) to overcome. With each dose I woke up during the night with fever, aches and pains, and nausea. I wasn’t able to keep anything down for a few days, and then I had to regain my strength and appetite. As if once wasn’t enough, I did it again with the hope that it wouldn’t be as severe, especially if I pre-medicated. The other factor was that with my first dose of T-vec I also had a first dose of Xgeva to fight against potential bone loss from my radiated left hip tumor, and its first dose can cause severe aches and pains. Well, there was no Xgeva injection with my second dose of T-vec, since I get Xgeva every six weeks and T-vec every three, which we hoped would lessen the side effects. While the aches and pains seemed to be less severe, with the nausea it wasn’t enough to continue with injections. We switched to radiation to zap away the leg tumor since I’ve had good responses to radiation in the past. I had four treatments one week apart in July and the tumor has spent the rest of the summer melting away – it’s a beautiful thing!

The New Challenge began very subtly on July 4th. I sat down at my laptop to type and experienced weakness in my left hand – my fingers didn’t want to fully cooperate. I actually checked the mirror for any facial droopiness and did the tests to check for stroke. Luckily, no stroke symptoms, but I knew something had changed. Over the next few weeks I noticed a change in my balance and the weakness grew to encompass my entire left side. Brain MRIs confirmed edema on my brain’s right side around the site of last year’s (June and September 2015) gamma knife treatments for a brain tumor. The post-tumor site did not light up on my March PET/CT scan (“no FDG avid focus or suspicious lesion”), but had a change in my June PET/CT scan (“Hypodense lesion of the periventricular white matter superior to the right lateral ventricle is increased in size measuring 2.5 x 1.6 cm without FDG avidity, likely representing focal edema within the location of known metastatic lesion best seen on prior MRI dated 4/18/2016”), and the doctors don’t know whether it’s radiation necrosis (dead tissue from the 2015 gamma knife treatments) or tumor growth in the exact same spot. The “spot” has grown from 1.4 cm on July 11th to 1.7 cm on August 5th to 1.8 cm on September 2nd, so at least the growth is slower! (Note: 1 cm = .393701 inch) However, the perilesional edema has decreased, likely related to the steroid treatment I’ve been on since July 29th. I started with high doses of steroids (16 mg/day) and have been weaned down to 4 mg per day for the past few weeks. Today that dose has been reduced to 2 mg a day for a week and then down to 1 mg a day from there on out. I’m quite ready for this reduction and hope to potentially regain some of my tastes and smells!

Why now? It’s been a year since my gamma knife treatments. The doctors are puzzled too. It’s possible that the immunotherapy I’ve been on every three weeks since last June (infusion treatment #22 yesterday) has had some effect. No one knows. The other unknown is whether the “spot” is radiation necrosis or tumor growth with no way to know without a biopsy (unless it lights up on the October 5th PET/CT scan). Hopefully it’s radiation necrosis and the continued steroid treatment will continue to lessen the edema. Time will tell! (I wish I had more patience!!)

The plan moving forward: I’ve met with my neurosurgeon and discussed laser interstitial thermal therapy as a best possible treatment. Resection is another option but is more invasive – we still need to discuss this as a viable option since my oncologist seems to favor this. I favor less time in the hospital! A decision might be made after the PET/CT scan plus another brain MRI (October). My neurosurgeon, radiation oncologist, and oncologist have all been discussing my case and keeping up-to-date on test results. The ultimate decision will be between my neurosurgeon, Bill and me.

For now I’ve been busy with occupational therapy (OT) for my hand and arm movement, and physical therapy (PT) for balance, gaining strength, and walking. OT has helped to regain some finger movement and grip strength, and PT has improved my gait. I’m not sitting at home wringing my hands, but am enjoying each day for whatever gifts it brings and every day delivers if I allow myself to be open to it. I’m quite thankful!!

Treatment since May 13th (thank goodness I retired!):

• 6/01 – labs, doctor, infusion plus 2nd (and last!) T-vec injection
• 6/07 – dermatologist
• 6/22 – PET scan, labs, doctor, infusion
• 6/24 – radiation oncology appt.
• 6/30 – radiation simulation
• 7/07 – radiation planning
• 7/11 – brain MRI
• 7/11 – 1st radiation of right pretibia
• 7/13 – labs, doctor, infusion
• 7/18 – 2nd radiation of right pretibia
• 7/25 – 3rd radiation of right pretibia
• 8/01 – last radiation of right pretibia
• 8/03 – labs, doctor, infusion
• 8/18 – occupational therapy (OT) begins
• 8/23 – OT and neurosurgery appt.
• 8/24 – labs, doctor, infusion
• 8/25 – OT
• 8/26 – physical therapy (PT) begins
• 8/29 – OT
• 8/31 – PT
• 9/01 – OT
• 9/02 – brain MRI and radiation oncology appt.
• 9/07 – OT and PT
• 9/08 – PT
• 9/13 – OT
• 9/14 – labs, doctor, infusion

As always, my thoughts and prayers are with those fighting the fight and with those for whom the fight is over.