I haven't updated in far too long. I always think I don't have enough to write about to do more frequent updates, but then I end up with like 10 pages worth of updates and I appreciate your patience if you are actually reading the whole thing. I will break this into sections and try to do a "too long; didn't read" short summary at the very bottom for those of you who freely admit that they were never elected to read.
Worldwide NET Cancer Awareness Day / Fundraiser
As I have mentioned before, Neuroendocrine Cancer is a rare disease, and my particular disease is an even more rare subset referred to as High Grade Neuroendocrine Carcinoma (HG NEC) which is more aggressive and almost always progressed to stage 4 by the time it is discovered, reducing patient outcomes. Much of this late diagnosis is due to continued mis-diagnosis as other chronic issues, as doctors are taught to "think of horses if you hear hoofbeats" or in other words if it looks and sounds like a common illness it probably is.
I say all of this to ask that friends and family join me in helping to raise awareness for this disease and help patients get diagnosed sooner and more accurately by sharing some of my posts in the coming weeks.
I am also considering having awareness/support Tshirts and/or bracelets printed with zebras on them and something about Neuroendocrine Cancer. My sister Kathryn would make the design and I promise it will be awesome, because she is awesome. The Tshirts would be $20 each and bracelets $5. If you are interested and would DEFINITELY buy a shirt and/or bracelet please let me know as I would need to have minimum quantities guaranteed before I commit to an order. All proceeds of these items will go towards my medical bills, which are currently in excess of $10,000 because my insurance plan year ended June 30, just after my first couple rounds of chemo, meaning I have had to meet my deductible twice in less than 6 months.
Carboplatin and side effects
As most who read my last blog know, I was switched to Carboplatin instead of cisplatin due to increasing side effects including some irreversible hearing loss. I tolerated the first round of this quite well, especially compared to round 5 of cisplatin. I still have ear ringing (and am getting hearing aids), fatigue (but not all day every day for 3 weeks), and increasing neuropathy. My new hair growth is starting to fall out the past couple days. The main side effect that got better is I didn't really lose my appetite this time. But maybe not so good, I gained back 6 lbs in 3 weeks after remaining fairly stable at every 3 week interval for nearly 6 months.
Fatigue continues to be my worst ailment, I would even say the fatigue is worse than permanently diminished hearing. I can get hearing aids. I can ask people to speak more loudly or spell words or write things down. I can cope with it, it is annoying but it isn't debilitating. Fatigue doesn't go away until it is ready, no matter what you do. It is unpredictable day to day and situation to situation. I could be feeling great all day and then suddenly, when I least expect or want it, it could hit me like a semi truck. I get winded walking into the next room, I can barely hold my eyes open. My brain doesn't seem to want to funtion properly. I lay on the couch, and all I can think of is how much I would like to eat a sandwich or a bowl of cereal, but I can't even imagine summoning the energy to walk to the kitchen, let alone standing long enough to prepare a meal.
SCAN RESULTS - MRI / CT
As many of you know I had an new brain MRI and chest/abdominal CT done last week Thursday (10/14). Yesterday I had my appointment with my nurse practioner to go over the results and discuss next steps and the outcome was quite good, medically speaking.
The brain MRI continues to be clear, which is terrific news. The CT also showed that my lungs are also still clear and that there is no new growth anywhere else! As for the existing tumors, the primary tumor on the pancreas shrunk ever so slightly. Several of the liver tumors also came in a little smaller as well, with any that didn't shrink at least remaining stable. No individual tumors were called out as having gotten any bigger compared to July.
Like I said, medically speaking this is very good. I know I should be happy about this, my medical team certainly is. I should be over the moon jumping for joy. Many of my new friends have not been so lucky in the recent past, and I feel awful and selfish about the fact that these good results have me in a state darkly contrast to that of my July results. Back then, 75% reduction in area. I cried thankful tears of joy. Today, when I heard the results I had to hold back my tears because they were of anger and disappointment.
I try to keep a positive attitude as much as possible, but I probably took it too far, got my hopes too high. I kept convincing myself that today they would say "there is nothing there, it's all gone" or "it was all an awful mistake, there was never anything there to begin with" The reality of my life, though, is that in my case even zero reduction is cause for celebration, so long as there hasn't been growth and I am able to tolerate side effects with a decent quality of life.
So the path continues onward. 3 more rounds of Carboplatin and etoposide, spaced 3-4 weeks apart. I started the first yesterday after receiving the news and will finish up right before the new year, and have another scan session mid-January.
TL;DR version:
1) NET Cancer day is November 10. Please share my posts on Facebook as it approaches to raise awareness. Also, let me know ASAP if you would definitely buy a tshirt for $20 or bracelet for $5 to help with medical bills so I can put thathe plan in action.
2) New drug carboplatin felt less harsh but I am still getting hearing aids and fatigue is the absolute worst and most depressing part of this treatment.
3) I got the first updated measurement scans since July last week and results yesterday. Results are good with several small shrinkage anden no new growth, but I was still sad about it because it isn't gone completely.
