August 15, 2015- Assessment is Finally Over

Well, there wasn’t much to report for quite a while and I was out of town for a time, so there has been silence on the blog. Behind the scenes there was much back and forth over scheduling and then rescheduling a needle biopsy to confirm whether or not the lung mass seen in my CT/Pet Scan was a melanoma or something else. Additionally, during this time my husband and I joined extended family members on a glorious, previously planned trip to Peru, which included Macchu Picchu and the Amazon rain forest. I must say, I originally thought the vacation was scheduled at the worst time for my illness, but it turned out to be the best timing ever! I was able to totally relax, forget about health issues, and have fun with my fabulous family. I hiked every day like crazy, at high elevation, long distances, and even up a mountain, with no problems at all. The trip was a real gift for my mental and physical health. Peru is a clean and beautiful country with wonderful people. There are ancient indigenous ruins everywhere, history, and the rain forest was beyond description. It was an amazing trip in every way.

Back to the tedious melanoma, I ended up having a needle biopsy performed at UCSF a couple of weeks ago, just two days after my return from vacation. I chose UCSF over Stanford because UCSF had the capability to run additional genetic testing on the tissue collected due to the clinical trials offered at UCSF. This would allow more targeted treatment options. A couple days ago I met with the UCSF oncologist, and indeed, the lung mass is a melanoma. The genetic results haven’t yet come back. This oncologist recommended I enroll in a clinical trial where I take a drug combination of Nivolumab (anti-PD1) and Ipilimumab (Yervoy). This is a highly effective treatment, though the side effects might be rather uncomfortable (aren’t they always!). This doctor was recommending I start next week, though I’m still doctor/hospital shopping. I’m not thrilled with UCSF for a variety of reasons, and can get the same treatment from another facility. I currently have an appointment with a well respected oncologist on Monday who practices at a private hospital in San Francisco. This oncologist comes from the highly esteemed MD Anderson and he has access to the same clinical trial recommended to me by the UCSF oncologist, and more. We’ll see. Either way, I’m moving forward on getting rid of the melanoma. Yay! Things are finally moving from the assessment phase to the getting-rid-of-it phase. Frankly, I’m ready to be done with this whole thing, Ha ha! Heck, my immune system fought the melanoma off for almost 16 years, so I just need to get things going again. No room for complacency in my internal immune world! No laying down on the job, girls!! It’s back to boot camp for you!

Thanks for your continued support, good thoughts and prayers. This is just a bump in the road and soon enough I’ll be past it!

Hello world!

For those of you who don’t know, this little saga all started on May 21, 2015 when I had a little seizure in my kitchen. It was, interestingly, preceded by an intense sense of Deja Vu, which it turns out is a phenomena generated by the brain’s temporal lobe, where my irritated brain tumor happened to be located. The tumor, luckily, was located in a really good location, outside the Mata dura (Latin translation- Tough mother!), against the temporal lobe, back near the occipital lobe, between the upper and lower parts of the brain. Luckily again, no actual gray matter was involved. Doctors originally thought it was a meningioma and would be an easy fix, just Cyberknife it or surgically remove it; then I’d just get on with life. Well, it has now evolved into this annoying, attention seeking, all-about-me melanoma! Such a hassle! I really had different plans for my summer! On the super positive side, the alerting seizure timing was absolutely perfect. It occurred just a few hours after completing my last final exam of 3 junior college classes, plus I was home, not driving or engaged in any other activity that might have complicated things. Additionally, the brain tumor was caught really early when it was still very small (1 cm in size), and it was located in a part of my brain that didn’t really do much anyway! I should say, at least I haven’t been using it much, so haven’t missed it! All great news!!

I’ve been getting amazing care at Stanford. I had my tumor removed a few weeks ago, and the surgery went well. Easy peasy. The little area was irradiated last week using a Cyberknife procedure where magical photon rays were shot into my brain. I highly recommend Cyberknife. I got to restfully relax for half hour stretches on a table listening to New Age Music over 3 days; kind of like a spa treatment, but without the skin toning benefits. To my midwestern relatives – I highly recommend cancer treatments offered in California! 

Last week I also got to have a full body CT/PET Scan to search for any additional internal imperfection that might be lurking anywhere inside. Weirdly, it turns out I have something called polycystic kidney disease which is congenital (thanks Mom and Dad!). I’ve got cysts all through my kidneys and liver and have likely always had them. I am completely asymptomatic and have passed all my blood, urine, blood pressure tests with flying colors, always. If you did an internet search on it you might see dire health warnings and my relatives could start worrying they need to change their weekend behaviors just in case I need one of their kidneys in the future. No worries! My oncologist says I likely would never have known I had this condition unless I’d been in a car accident or had some other reason for a scan. Turns out we find out all kinds of internal oddities that we all have been living with forever, when we go looking for stuff. As to other, more melanoma related issues, they also found a small cluster, about 2 cm in size, of something my right lung. This area did light up (radioactive sugars injected prior to the scan collect in tumors and the brain- high feeding tissue), as a cancerous tumor might, but the radiologist and the oncologist thought it wasn’t as bright as a melanoma likely would be. It could be that this little cluster is a group of benign cysts, nodules, whatever. The oncologist is going to needle biopsy it next week, and based on the results, we’ll develop a plan. I don’t think the biopsy includes New Age Music, but it is still way better than a colonoscopy, so I’m all over it! Ha ha!

As to future possible interventions, there are lots of immunotherapy drug options available because of the amazing new advancements in cancer research over the last decade, particularly the last few years. Apparently, melanomas are the most, or at least one of the most, popular cancers in the research world these days. Strengthening a patient’s immune system to fight their own cancers is the prominent treatment model and melanomas respond well to this type of intervention. Pretty cool! That’s definitely a different model than was used to develop chemotherapy treatments, which have also benefitted so many people. Those who know me well, know that daily green smoothies over about 6 months completely and unexpectedly cured my medically controlled asthma of 45 years. Amazing health improvements can happen! Needless to say, I’ve cleaned up my already pretty clean diet, and, sigh, will be actually following through with daily exercise!

For those who don’t know and might be interested in even more medical minutia (yawn), I did have a lentigo maligna melanoma removed from my nose over 16 years ago. It was done at UCSF using Moh’s surgery and the margins were clear. I’ve been religious about dermatological skin checks every 6 months to a year since then, and though I’ve had precancerous (non-melanoma) areas burned off or removed, I’ve been fine. The Stanford neurosurgeon and oncologist are both mystified as to how or why, after all these years, I had this new melanoma brain tumor develop. Why didn’t it develop back then? Could it be that there was just 1 cell that moved there and grew super, super slowly over 16 years? I figure that whatever kept the tumor at bay for 16 years will kick back in again and keep things in check for another 16 years, though I’m actually counting on another 30 years. It could be that it was a total one-off. As noted earlier, I’m super lucky!

I feel good, healthy, and positive. No anxiety or worries. Life is good!

I hope you are all having awesome summers. Keep checking in and let me know what you are up to. I bet lots of cool stuff!

Now, I’m off to putter in the garden and go bath these stinky dogs of mine!! Happy 4th of July!!