Update on my weird MEL…

7/31 I had my second infusion of IPI/NIVO. 10 days later I was in the hospital with severe colitis – over 30 stools a day! It took 10 days for the Dr.s to agree to give me an infusion of Infliximab – an Immuno Suppressant. Once they did the diarrhea lessened, then stopped, and I was discharged 2 days later. Unfortunately, once the Infliximab wore off 3 weeks later I had a recurrence and I was again hospitalized and needed a second infusion. Fairly rare I’m told, and my Kaiser ONCO group had never had a pt. that required hospitalization at all, let alone someone with a recurrance. sheesh. I don’t like being their guinea pig! they did refer me to the JHU Melanoma Center GI specialist who had seen a LOT of these cases, but wouldn’t refer me to the ONCOs there. That’s where I want to go, especially because my melanoma seems to be both diverse and fickle…

New CTs were taken during my second hospitalization, and they showed two new tumors in my spine. An MRI showed that one had completely invaded the T11 vertebrae, causing a stress fracture, and then created a tumor-like growth outside of the vertebrae to the left of the sheath that surrounds the spinal cord. The other was in L4, but this had not progressed outside of the bone. In addition, the lymph node in my rt. groin had grown by 2CM!

The 3.5 CM node in my right lung had shrunk to 1.1 CM, so everyone was confused! Around that time I learned that I was BRAF positive. So both were good news!

All the Drs were puzzled about how I could be seeing results in one tumor, growth in another, and new tumors… all at the same time. They aren’t interested in discussion this too much… other than “reminding me” that patients often see tumors flare before they start to regress….

yeah yeah yeah, but growth, regression AND new sites???? It’s ODD, and they agree. Seeing spinal lesions is also weird, as that is usually a late-stage development. Go figure.

I opted for radio therapy treatment on T11 and on the lymph (which is very painful) in the hopes that it could stop the tumors from growing while I weaned off of Prednisone (I was at 80MG daily) in order to get started with the BRAF/MEK targeted treatment. During the 10 day treatment the lymph became very inflamed, with two dime-sized areas on my leg about 2 inches away (10 o’clock and 2’oclock) looking particularly red and painful. Upon completion of the radio therapy on T11 I received high-dose treatment on the lymph.

I saw no particular improvement from Radio therapy. While I couldn’t directly monitor growth of the tumors on my spine, the painful “twinges” I started to get have increased in frequency and intensity over the weeks since they were first identified. The only subtle improvement I may have seen is a reduction in the redness/inflammation around the lymph, but even that is debatable. I was prescribed a topical painkiller, and Tramadol – an opiod pain killer. I didn’t want to go there, but OTCs were no longer cutting it and I felt I needed something in my arsenal in case the pain became overwhelming. I tried taking it during the day and found it made me so drowsy that I really wasn’t able to work or drive if need be. About 2 weeks ago I got a Medical Marijuana license approved and I tried some things that the dispensary had to offer, but even on the lowest dosage of a capsule stated to be 3/4 Sativa and 1/4 Indica and prescribed to let me sleep, I remained WIDE awake, but all I could do was sit in a recliner playing solitaire and watching NFL football (GO RAVENS!) because I was clearly “stoned”. Sigh. I’ve been told it is a trial and error method to find what works for you in the dispensary, but remember you are paying full price for “prescriptions”, so it’s expensive when something you try doesn’t work for you, or can only be used when your pain is bad enough that you don’t care if you are with it anymore. Sigh.

Fast forward 7 weeks. I had another PET, which confirmed that the lung nodule was “dead”, in that it remained the same size, but it’s SUV was 1.1. Lymph had grown. T11 and L4 tumors flared, but L4 tumor (untreated by Radio therapy) had not grown outside the bone but had caused another stress fracture. It also had an SUV of only 2.1, so it looks like something contained it. T11 (treated by Radio therapy) had grown by 1cm and had an SUV of 4.4. New areas showed up: one on my liver, one in a lymph node in my stomach. Both of these had SUVs under 4.2, but were classified as “equivocal” because they didn’t seem to have formed a true tumor… like smoke, but no fire. Radiologist said my test results were “challenging”.

So, today is my first day without steroids – I feel some much more like myself! Onco has ordered the BRAF/MEK drugs, and I’m expecting a call from the ONCO pharmacy who manages things on that front. Hoping that this targeted therapy works for me without serious side effects, even though I over respond to all medicines, the docs want to start me on full standard dose. We’ll see…