“My job is to stay alive long enough for the medicine to outrun me and I am not going to be unnecessarily buoyed or unnecessarily depressed by someone else’s experience. I have my own fight to fight.” Elizabeth Edwards

Plan C Part Two

From Jan's Sunday Punch blog.

I've had both sides of my liver radiated with microspheres since I posted last. I was in Kenner, LA last week having the left side done after the right side was initially radiated in August. I struggled with the steroids, depression, night sweats, flushing and nausea, but eventually started feeling better when it was time to have the left side done. The doctors had me do a CT scan here in Austin so I could bring it with me. I picked up the results of that CT scan on Friday evening so I could have it when I left on Saturday morning. I read the radiologists report and the damn results of the scan showed the tumor had grown. Crap. (insert photo of me shaking clenched fists). It wasn't a huge amount of growth, but any little bit at this point sucks. And I couldn't talk to anyone about it until Monday at 8 am. Nice.

I did get to speak with a nurse at the NET clinic in Kenner on Monday morning. There are several reasons the test might have shown an increase in the tumor size and after talking to the doctor on Wednesday before the procedure we determined I needed to get through the whole treatment then we could do more extensive tests that are more comprehensive. The doctor initially said I would probably have an easier time with the left side. We talked about side-effects and how the instant the microspheres hit the tumor they start working so the tumor, as it dies off, gives off lots of gunk (hormones) causing the night sweats, flushing, etc. Not much to do about it but stick it out. After the procedure was over he mentioned he needed to speak to my cousins who were waiting for me. The hot doctor had decided at the last minute to give me a larger dose of the radiation. I responded with "so I won't really have an easier time with the left side after all?" and he replied "yeah, not so much" as he waved his surgical mask and rode off into the sunset. I was sedated so everything had this sort of ethereal, bad movie feel to it.

So I'm off again. I'm moody, crabby, sensitive, emotional and sometimes don't particularly care to be around other people. The nurse said it would pass and I'd probably feel better again by Christmas. Sounds great to me. I'm thankful for those patient folks I work with. The ones who are unsure they should step into my office, but do it anyway and usually with a big smile on their face. Thanks for making me feel normal when everything else isn't normal at all.

The radiology team at Ochsner was great and plenty funny. Lots of Cajun accents behind those masks which made it hysterical while I was in the twilight zone. One nurse asked if she could take a photo or two while I was being prepped for the procedure since the senior nurse was leaving in two days and trying to train everyone on how to do the prep for this type of procedure. Since I was already zinging along on sedatives I said, "sure, no problem..." I hope like hell I never see those photos on any social media sites because they were not a good look for me. That's all that needs to be said about that.

Thanks to Julie and Lee Ann for taking the trip with me and babysitting me while I came out of sedation. Thanks Karen for chauffering me to and from Fannett. And a special shout out to cousin Dana who brought butterfly bandages over so we could get the bleeding near my femoral artery to stop. Sounds a lot more dramatic than it really was. She has a cool head. Love love love to you all.

I'll keep you posted on any further developments, but really at this point I'm just a crabby cry-baby who can be seen laughing hysterically at times. This adventure does still slightly resemble a Fanny Flagg novel or maybe just a bad Lifetime Movie made for television.

smak
jan

Plan C Version VI

From Jan's Sunday Punch blog.

I'm happy to say we finally have a plan for now. Plan C version six. Yes, version six (embolization, study, surgery, chemo-embolization, transplant, oops no surgery—microspheres). I leave for Kenner, LA on Monday to have a procedure that will inject radiation in the form of microspheres into the arteries/veins that carry blood to the tumor. The spheres will hopefully create shrinkage havoc for the tumor. One similar to the Wicked Witch's demise in the Oz movie. The ideal result would be enough shrinkage that would allow a surgeon to consider resection. Most likely, this treatment will occur in two phases, six weeks apart.

Here's a little bit about microspheres: SIR-Spheres (brand name) are tiny polymer beads (about one third the diameter of a strand of hair) that are combined with yttrium-90, a radioisotope that emits pure beta radiation. Y90 (yttrium-90) has a “half life” of about 64 hours, that is, every 64 hours the level of radiation falls by one half until it is effectively gone after 2 weeks. The radiation from Y90 penetrates an average of only 2.5 mm (approximately 1/16 of an inch) in tissue. After injection into the artery supplying blood to the tumors, the spheres are trapped in the tumor’s vascular bed, where they destroy the tumor cells by delivering the beta radiation. The radiation is targeted to the tumor and after 14 days the majority of the radiation effect has occurred. SIR-Spheres are considered a regional treatment as the radiation is directed to the liver and does not affect other organs in the body (hopefully). Since the SIR-Spheres are biocompatible they can remain in the liver without posing any danger to the patient.

Unlike conventional external beam radiation, which can only be applied to limited areas of the body, SIR-Spheres selectively irradiate the tumors and therefore have the ability to deliver more potent doses of radiation directly to the cancer cells over a longer period of time.

So we, Cousin Julie, Dad, Bev and I, head to the Big Easy (Kenner is a suburb of NOLA) on Monday, August 16. The whole treatment process is a two-day outpatient experience (Aug. 17-18). We should be back in Winnie for recuperation by the 19th. If you're in the neighborhood, I'd be happy to whip you in a game of cards. But call first in case I'm in a crabby mood.

That's the plan. I'm excited about focusing on this strategy. I'm glad I learned tons this summer about my options, especially understanding what Plans D and E might be. I'm hoping for the best, again. Thanks for the support and the great notes.

I'll keep you posted and will publish photos. It ought to be an interesting adventure.

smack, jan

Many Opinions

From Jan's Sunday Punch blog.

Hey whatsup? I won't act innocent like it's okay I haven't posted in a long time. I know, I know, a blog is about timely communications... I truly appreciate all the the notes from folks checking on me since my last post.

I've spent the last few months researching and visiting specialists. I'm waiting on the third surgeon to determine if he can do surgery. If not, I've got to determine what the second best option will be. The scenarios: y90 Microspheres, bland embolization and the third is Peptide Radio-Receptor Nuclide Therapy (P.R.R.N.T) treatment in Europe. All have their benefits, and challenges in terms of side effects and insurance. When a treatment plan is determined, I hope to work in parallel with the Mayo clinic to determine if I qualify for a liver transplant.

I'm trying not to freak too much at the delays and the time it takes for everyone to weigh in. I'm also trying to keep it all straight in my head since everyone who weighed in has a different opinion or "idea". I'll keep you posted.

Here are a few observations from the last few months:

1. This tumor takes up 60% of my liver. Fortunately this has not changed much since my diagnosis in 2008. My expectation until this statistic was presented to me by Dr. O'Do at University of Iowa was 40%...tops. Imagine my surprise.
2. My brother David is a wimp about bland food and believes this is the only thing all restaurants in the midwest serve . Next time we'll need to pack a bottle of cayenne pepper sauce for him to have when the whining starts.
3. Midwestern folks refer to parking garages as ramps. Sure, I knew about stuff like pop meaning soda, but it would have been good to know this before we tried to find a place to park at U of I. Not to mention the added drama of David trying to maneuver a minivan. (Thanks for going with me Dave)
4. Not every CT scan requires an enema so it's a good idea not to keep asking "am I going to have to have an enema" every time you have a scan. People look at you funny and say stuff like "do you really want one Ms. Kiker?"
5. The people I met in Minnesota were some of the nicest. Sharon and I were certain the Mayo Clinic was heaven. (not really heaven, but you know what I mean...impressive)
   
6. On several occasions at Mayo, Sharon had to be retrieved from the rotating doors used in every building at the facility. I thought she had become more sophisticated about moving doors since her move to Austin back in 85, but maybe she's reverted back to her country ways after moving to Kyle? (thanks again sister for going with me to MN)
7. Being trapped in a room or car with my dog after he farts. If the the noxious gas he produces was some sort of miracle tumor shrinking treatment, I'd be cured. If there had only been a warning label on his little dog ass before I...
8. I am the 2010 World Cup Phase 10 Champion.

I'll keep you posted when that final surgical opinion comes in. Thanks again for the notes, calls and prayers.

love, love, love,

jan

ps. Thank you Carolyn and Minarovics for insisting (guidance, suggestion, hammer?) on a trip to Mayo. You were right. They are willing to consider a transplant. Thanks again.

Blogpost: Oh the Possibilities...

From Jan's Sunday Punch blog.

Sheesh. I know it's been a long time since I've posted. It's not because things have been boring. Quite the opposite this time. I'll try to shorthand the events of the last three months. I saw a neuroendocrine/carcinoid cancer specialist in Kenner, LA. Recommended "debulking" the tumor in my liver by taking out as much as possible. What? Surgery back on the table? Really? "Yeah it's risky and yes there may be complications, but your best chance at any shot of resetting your clock is to take the damn thing out. Oops, we can't take it out, so let's take out as much as possible and treat the rest with chemo on the spot. We'll take out your gall bladder, the other little tumor you never talk about, and feel around for the primary tumor while we're there. And by the way, this thing is huge."

Wow.

I went back to Houston and talked to my docs at MD Anderson. The recommendation was still, no surgery. No way. Chemo-emobolization or a study to "slow down" the tumor growth, but no surgery. They didn't seem to be supporters of debulking.

Shit. That's quite a difference of opinion. One of the top specialists in neuroendocrine tumors versus the number one cancer hospital in the world. Who the hell's going to make this decision? I opt to see another specialist. Not necessarily a tie-breaker, but to reinforce the recommendation of surgery. I leave for the University of Iowa in Iowa City to visit this specialist in early June.

Meanwhile, more testing to determine the logistics of a possible liver surgery. Not quite a done deal yet. For instance, how much liver must be left for me to survive? What are the vessels like? What type of strain is the tumor having on my liver? Is surgery really feasible? The answers to all these questions, and more, will be determined by any number of 64-slice CT scans, MRIs, etc. I've also been to a couple of support/awareness meetings and met other folks with this type of cancer and even some that have had debulking liver surgeries and more. Great people with plenty of good advice.

And that's where I'm at now. Teetering on the brink of information overload. Testing and waiting. I think, either waiting for a time to make a very hard decision or maybe I won't have to make a decision after all. Maybe there really is only one option after all the testing is done. Nothing happens very fast except the speed at which my mind can produce irrational and desperate thoughts. So for now, I'm willing a tumor to stop growing, drinking wheatgrass again and trying not to think too much. I also see Dr. BAH frequently for much needed advice. I'll try not to wait so long to update the blog again. Thanks, as always, for the constant support and prayers.

pow,

jan

oh shizzle.

From Jan's Sunday Punch blog posting.

Stability didn't last as long as I'd hoped. I was going for 25-30 years, but obviously not on that particular drug study. The tumor increased a bit in size on my last scan Feb 26. I was promptly removed from the study and the search for Plan C is currently underway.

Dr. F initially suggested a bland embolization. It's invasive and one I'd hoped we'd use as a fallback plan. Dr. F found a couple of drug studies as well. The studies are testing drugs to see if they effectively slow the growth of tumors while controlling the two main side effects of carcinoid syndrome. This time not so much about shrinkage, but control or slowing down the rate of growth. All are good options.

Cousin Julie and I are scheduled to see a Neuroendocrine Specialist in Louisiana today. We made the trip last night after a couple of weeks of mad shuffling to get biopsies, scans and test results to the offices here in Kenner, LA.

I'm not sure what the day will bring, but I'm hopeful and thankful I have options. It's been difficult to get my head around not being stable. "Hopeful" was harder to get to this time. It may be because there doesn't seem to be any interesting drug studies right now that could produce the shrinkage I need without risking growth. The options start being embolizations or other procedures I don't fully understand or haven't researched yet. But that's okay, that's what I'm doing now. "Hopeful" is back. It never actually left, but just needed to move out from under frustration and fear.

I understand there may not be a "silver bullet" out there for me yet, but I'll take a few strategically aimed pezzizles at this point.

I'll keep you posted. smak,
jan

Blogpost: Happy in the New Year

From Jan's Sunday Punch blog posting.

Happy New Year. Everything's been going fine. Or at least everything I'm going to write about in this blog. (see explanation of gastrointestinal tract from Benched blog) No, no new tumors, just occasional discomfort. I had to skip one dose of Avastin in January because of a gnarly sinus infection, but I did get back on track in February.

Still stable. Feeling fine. We are restaging at the end of February to determine if the tumor is indeed staying the same size. My postings have been less frequent because I'm quite boring as far as the cancer goes and that's a good thing.

What's been going on? I traveled to Scotland for the New Year and had a great time. Lot's of castles, beaches and snow. No problems with meds or angina while there. Enjoyed a Scottish beer for New Years and later in the trip a vegetarian haggis. Not for the faint of heart. Very soon after my trip in mid January, I adopted a dog named Mozes. Or maybe he adopted me? He's beautiful and brilliant. He keeps me busy, entertained, and he doesn't seem to give a shit about cancer. I quite often imagine his internal voice saying, "What do you mean you don't feel well? Getupgetupgetup, let's go, it's time for our walk m'lady." (This happens at 5:30 am every morning.)

I'm busy at work, pottery class and always, always trying to win a lottery. Whether it's the one with the big money or the one where the doctor says "it's gone." That sums it up. I'll check in after my restaging/measurement.

smak,

jan