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!

Last update for 2014

It’s been two months since I last posted. When I’m feeling well, I don’t like to post to the blog because I don’t want to think about infusions, doctor appointments, scans, etc. However, I also don’t like to post when I’m not feeling well, because I don’t like admitting that’s the case. I had a bit of both going on the last two months, so I kept putting off the next post. Enough procrastination! I want to start 2015 anew and put all of the 2014 cancer stuff behind me, so here’s the update.

I finished my 4th and final Yervoy infusion on December 2nd. At my oncology appointment that day, I learned that my thyroid was functioning a bit on the low side and got a prescription of levothyroxine to take care of that. I had only started feeling tired, so this was a quick and easy fix. My doctor had previously said that this might be a side effect I would experience, and had actually seen it as a positive thing since other patients who had the thyroid effected seemed to also have the best results from the Yervoy. So YAY! However, I started with a headache during my 3rd infusion on November 11th, and it never went away. He ordered a brain MRI right away since melanoma can be so darn tricky. Fortunately, the scan was clear but did show that my pituitary gland was enlarged and that is what was causing the constant headache. I was put back on prednisone, and had relief within hours! How wonderful to be headache free!! Of course the prednisone also helped with the rash I had been fighting since the 1st infusion. (Side note for those suffering from the rash: My dermatologist recommended “soak and smear” for treating the whole body rash. Soak in plain water for 20 minutes, get out of the tub, don’t dry off at all, and immediately smear steroid cream over your body. Put on an old pair of PJs. Repeat nightly as often as needed. I saw relief in 4 days.) The prednisone made me ravenous and full of energy, so I gained back the pounds I lost after being on prednisone the last time but also accomplished a lot every day being the energizer bunny. Four or five hours of sleep a night was about the max. Now I’m down to only 1 prednisone a day for another week, so my appetite and sleep have finally normalized. All in all, the side effects were doable and I was able to function throughout. When I say function, I mean travel, babysit the grandkids, go out to eat, take long walks, etc. We didn’t sit very much!

I’ve made some big changes to my diet, moving away from most meat and really amping up the vegetable intake and using mostly organics. It hasn’t been a difficult change at all, and I’ve been surprised at how little I’ve missed meat. I also think eating more veggies makes me feel better. I make my own green smoothie in the morning, and I’ve found that’s really a great way to start the day. I love Indian and Thai cuisine, so I often have that for lunch. I’ve tried some new recipes (mostly soups so far – mushroom barley and tomato basil), and want to start the new year trying some more new dishes. I enjoy cooking when I feel well and am not exhausted after work. I’m planning to start the new year with Whole Living’s diet recommended by Ann. It looks like the perfect way to reset after the crazy holiday eating.

Next week I have my second appointment with the only integrative medicine doctor in the Hershey Medical Center system. We’ll review the blood work he requested and see what recommendations he has for me. I also contacted the Block Center for Integrative Cancer Treatment, and am gathering up the information they have requested so I can schedule a visit there in a few months. Their book, Life Over Cancer, has been a great resource for me. My oncologist and his nurse are on board!

My next scan is scheduled for January 27th. If I’m finally in remission, I’ll be shocked. I’m actually not expecting to hear that – maybe I’m just trying to protect myself from being disappointed. It’s been two years since I’ve been in remission and it hasn’t been all doom and gloom. Except for the hospital stays for the IL2 treatments and recovery, life has been really fantastic! My plan is to treat my melanoma as a chronic disease and keep working to prevent it from spreading. It’s what I’d have to do even if my scan is clear. I need to make my body inhospitable to cancer, which means I still have more changes to make to be the healthiest I can be. That’s my New Year’s resolution! Here’s to the healthiest you can be too! Thanks for all of your support during the past year – we couldn’t have done it without you!!