PET Scan Results

I had my 3-month PET scan on October 5th with some encouraging, though mixed, results. The most important is that the “right posterior frontal periventricular white matter hypodensity” in my brain showed no FDG avid lesion or activity. What this means is that it is NOT new tumor growth in the same spot where I had two gamma knife treatments last year, and IS radiation necrosis (dead brain matter resulting from high dose radiation). In Life Over Cancer p. 328, Dr. Block wrote, “…when the radiation damages a cancer, there is collateral damage to normal tissues. The normal tissue responds as it does to any injury, igniting the inflammatory response. Which inflammatory condition results depends on what kind of tissue the radiation hits.” With me the problem is that the necrosis is causing inflammation which is causing edema which is causing my loss of taste and smell and my left-side weakness. We could just wait and see if things gradually improve, but that also runs the risk that they could get worse. Right now we think that most, if not all, of my symptoms are reversible and we want that to continue to be the case. The neurosurgeon still thinks that laser ablation (laser interstitial thermal therapy) is the best option. We did discuss Avastin, Trillin, and Hyperbaric Oxygen Therapy briefly. I asked, “If the tissue is already dead, how can you make it “deader”? It seems that the necrosis is drawing in other tissue and growing. The laser ablation would stop this process, eliminate the inflammation-causing area, and allow the edema to dissipate. So I think we’re all in agreement to move forward with this procedure, but first there is a new development I would like to have resolved over the next few weeks.

The PET also found a “new intensely FDG avid subsolid and subpleural nodule in the left upper lobe measuring 1.1 X 1.2 cm” with “an adjacent focal intensely FDG avid linear opacity in the anterior aspect of the left upper lobe.” Now one thing to remember is that not everything that shows up as FDG avid is necessarily cancer – it could also be inflammation and/or infection. My oncologist isn’t convinced that this is cancer, but he ordered a needle biopsy just to be sure. Our daughter works in that department, and asked a doctor who performs the biopsies to review my scan. He agrees that this does not present as cancer, but more as an infection and recommended a course of antibiotics (Moxifloxacin Hcl 400 mg) followed up with a CT scan in 2-3 weeks. So that’s what is happening, and I’d like to have this resolved before the laser ablation surgery. If I end up needing the needle biopsy and it is cancer, then it’s just time to schedule more radiation to which I’ve responded well in the past.

The scan also showed a new lesion in my right acetabulum (pelvis cavity where hip socket fits); uptake in my right supraspinatus muscle, right arm, forearm, hand muscles, and right anterior leg muscles; and uptake in the right gluteal minimus and medius muscles. This is all likely strain/tendinitis due to me compensating for my left-side weakness. Makes sense, right?! I’ve been going to OT and PT and exercising at home. My right side is definitely over-compensating for my left side!

Finally, the scan showed “interval decrease in size and metabolic activity of mildly FDG avid soft tissue nodule in the lateral right leg measuring 1.2 X 0.6 cm.” Previously this nodule was intensely avid and measured 1.7 X 1.1 cm. This is the area just below my knee that was radiated in July. The right arm tissue lesion also continues to decrease in size, now down from 6mm three months ago to only 3mm (1/8th of an inch). The arm was radiated in February when it measured 1.1 X 1.3 cm – now it’s only millimeters in size instead of centimeters!

With all of this inflammation, I turned to my Life Over Cancer book again, redoubling my efforts to reduce my inflammation. I checked my lab results, and my CReacProt was high both September 14th (1.53mg/dL) and October 5th (2.28mg/dL). (C-reactive protein is a marker of chronic inflammation – Dr. Block likes to see this less than 1.0mg/L.) I’m making sure that I’m getting plenty of omega-3s (canola oil, pumpkin and sesame seeds, deep cold water fish, walnuts, flaxseeds) and omega-6s (olive oil, almonds, Brazil nuts), and adding more of the Healthy Dozen food families to my daily intake (carotenoids, cruciferous veggies, allium, roots and rhizomes, leafy greens, fruits, sprouted seeds and cereal grasses, medicinal mushrooms, probiotics and prebiotics, essential fatty acids, sea veggies and algae, vitamins and minerals). The simple additions are cruciferous veggies, tomatoes, garlic, salmon, turmeric, soy, green tea, flaxseed, and fruit.

My steroids are almost at an end! I’m now taking .5mg/day for a week, and then .5mg every other day for a week. Two weeks and I’ll be steroid free! I hope the “moon face” and extra weight will soon be gone!

Yesterday I picked up my left lower leg metal brace which inserts into my shoe, extends behind my leg, and attaches via velcro just below the knee. This helps me to kick up my toes, keep my heel down, and decreases the hyper-flexing of my knee (which makes it really sore!). I’ve been wearing it at my PT appointments, but today is my first full day with it. I hope to gain some additional stability with it and increase my distance with less pain.

Big update, but things are still manageable and looking up! Cheers!

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.