PET Scan Results & New Treatment

I’ve had lots of appointments in planning for healing my surgical wound, which they’re now calling a radiation wound since the radiation I had for the tumor back in July is the reason for the tissue damage and the reason it won’t heal.

I visited my family doctor (ended up being a physician’s assistant, but he was great!) for my left knee pain since it’s no better and is really impacting my mobility. After a thorough exam, he recommended an x-ray and prescribed additional physical therapy just for the knee and Meloxicam to reduce inflammation. The xray results: Findings: “There is mild narrowing of the medial joint compartment and tricompartmental marginal osteophyte formation. No joint effusion. No fracture. No lytic lesion.” Impression: “Moderate degenerative change of the left knee” I’ve already begun the physical therapy sessions to strengthen my quads, something I’ve been trying to do for months. I’m even going without my brace every other day to try to strengthen my ankle and knee. Next step will be to see an orthopedic doctor.

I had a consult at the Center for Wound Care at the Rehab Hospital for hyperbaric oxygen therapy (HBO). Apparently my wound is a perfect candidate for HBO since this kind of wound has the most success with that treatment. I needed a CT scan of my lungs and a current echocardiogram to be approved.  My echocardiogram was clear with little change from 3 years ago. My lungs were clear in the PET/CT scan I had yesterday. My wound care specialist prescribed Ciprofloxacin Hcl 500mg for 10 days to combat the pseudomonas infection. She also prescribed Neurontin (Gabapentin 300mg), starting me on the lowest dose for the nerve pain I have in my right lower leg.

I’m scheduled to begin HBO on Monday morning. I need to arrive 30 minutes prior to my treatment to prepare. That means changing into a 100% cotton gown. I’ll also be checked by a doctor for clear lungs, temperature, and blood pressure. Then the hospital bed is rolled into the chamber for treatment to start. First the pressure is increased gradually for 10 minutes as though I’m scuba diving 45 feet down (they call it a dive). I’ll need to pop my ears. Then I’ll breath 100% oxygen for 45 minutes. I get a 10 minute break by wearing a mask to breath “regular” air for 10 minutes to avoid oxygen toxicity. Then I’m back to the 100% oxygen for a final 45 minutes. The process is completed by decreasing the pressure over 10 minutes and I’ll need to pop my ears again. I’ll be checked by the doctor once more, and that’s it. There are a lot of things to avoid prior to each treatment: no lotions, makeup, hair products, deodorant, jewelry, perfume, etc. New nail polish needs to be applied the Friday before a Monday treatment so all fumes are dispersed. It’s very specific! I can watch Direct TV (no HGTV though), listen to music or watch movies with CDs I bring along, etc. I think I’d like to listen to books on CD. If anyone has any good ones, let me know. I need to visit my local libraries to check out their selections.

The HBO requires quite a time commitment! They have recommended 40 treatments (insurance approved 30). I will go 5 days a week (Monday-Friday) for 8 weeks, hopefully. Initially I may feel more energized and the therapy may even reduce my pain. We’re hanging a lot of hope on this!!

The PET scan was good overall. The only thing that needs to be investigated is a small bulge on my left pectoralis muscle. It’s suspected that it’s a result from my arm exercises, but we’re going to be cautious and check it out. I have a needle biopsy scheduled for next Thursday under local anesthesia to learn whether it’s melanoma or not. If it is melanoma, it will get radiated and I’ll be done with that. If it’s not melanoma, then I will have No Evidence of Disease (NED) for the first time in years!!! It would almost be a miracle!!! All fingers and toes crossed!

Pain management and exercise are at the top of my to do list. Thank goodness for my wonderful hubby – I could not do this without his constant support and love! He is my rock and, with him, we can do this!! I also greatly appreciate the encouragement I receive from my blog readers! There are days when it’s your motivational messages that keeps me going! Many thanks and love!!

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!