May 1, 2015 (Fri) – Life is a Box of Chocolates…

OK, say it with me now: and you never know what you’re gonna get. That’s kinda the way it works in the lung cancer world – you look right ForrestGump_Chocolatesand get smacked on the left. Or you look straight ahead and get rear-ended. This particular time, while expecting, but hoping against, a particular result, I actually was not surprised. I got that chocolate nougat I thought I was picking out. Not a particularly tasty morsel but not a surprise either.

These past two weeks have been incredibly packed with stuff. From the Breath of Hope Walk two weeks ago, to a Rotary volunteer gig at the Humane Society last Saturday, to the Moores Cancer Center fund raising gala later that same night, finding time to update my blog has been a challenge. Right now I am 37,000 feet in the air, probably somewhere over Missouri, en route to the the Lungevity Hope Summit in DC. I figured this would be the only chance I have in the next couple of days to update everyone on my latest scans. But, as before, don’t expect a lot of cutesy graphics as I am writing this on my iPad and I was not about to spring for $19.95 for airplane wifi access. This will have to wait until I check into my hotel and I can can tweak and upload it.

As you know, last Monday morning I had my every-six-weeks double-your-pleasure set of scans: a quiet, hot-flash-accompanied CT scan of my lungs, which only took about 10 minutes, and a clanging brain MRI, that, unfortunately lasted about 30. But the good news is that it only took them two sticks to get an IV in me this time. That’s a 100% improvement over my last four-jab visit.

The next day I e-mailed my onc-doc to get the results. Surprisingly I got an email fairly quickly in reply from his nurse who indicated that he was out of town that day. However, she was very accommodating in faxing me the write-ups from both scans. Felt kinda weird reading my own results without going over them with my doc.

We have good news, and not-so-good news. The MRI on my brain came back with no change. No growth, no shrinkage, still there (whatever it is – more on that later), but not gobbling any further real estate. So no treatment plan at the moment for that puppy, er, fuzzy. I’ll take that.

However, the CT indicated continued slow growth in several fuzzies, in and around my lungs, just as the last test showed. And this time a new area of “suspicion” popped up: a spot on my kidney. OK, that was not the nougat I was expecting. But it is what it is, whatever that is.

Tuesday afternoon I met with my radio-doc to go over the MRI results. Although he likes to give me the news himself, he has finally accepted the fact that I find ways of getting my results before he can inform me. He was a bit bent out of shape because he had ordered a hi-rez version, and my regular onc-doc had ordered a standard one in direct contradiction. Of course, the scan-docs ran the basic one and the image was not as good as they wanted. Advice to other survivors: question everything. This occurred once before and I should have double checked before the scan to be sure they were doing the right kind. You have to stay on top of the details in your treatment. Do not make assumptions (as I did this time) because, well, as you know, ass-u-me.

Bottom line, he agrees that not zapping that bad boy makes sense now since it hasn’t changed. I think he regrets not convincing me to nail it the last time when he was certain it was an active fuzzy that needed blasting. So no need for that second $550 opinion right now. I’ll save that for if/when there is doubt about my treatment.

On Wednesday, I met with my lung-onc specialist at Moores who went over the results of the kitty-scan. Yes, things are still progressing (still hate that word) but at a reasonably slow pace. Slow enough to keep me in the trial for at least the short, perhaps longer, term. The kidney spot was a surprise as she hadn’t picked up on that in the write-up which she only had done a quick scan herself. Apparently that spot has been there, disappeared, and then come back over the last 9 months. But it was never pointed out previously. Although she is not overly concerned about that newbie, since she is not a kidney specialist, she was going to present it to the “tumor board” at Moores that meets weekly to get another opinion.

Bottom line #2: I am staying the course with no change in treatment for another six week increment. Nice to at least not have that hanging over my head for a few weeks despite the obvious concern about the direction things are going.

But as many of you are aware, there are a bunch of new treatment options out there coming to a city near you. Preferably to one near me. I asked my long-onc how long I might be able to continue the treatment plan I’m on before having to switch to something else assuming the same rate of progression. I was expecting maybe July or August. She said January. Really? Now that was very encouraging.

Obviously things can change and that estimate might go up in smoke, but I felt a little better after hearing that. Plus my A-Team drug, AZD9291, very likely will hit the market before the end of the year because it has shown to be so effective and is getting fast tracked. Once that happens, they can take me off the trial and prescribe the drug. That will be handy because they can then add other treatments in combination that they cannot do now because of the strict clinical trial guidelines. And if that kidney spot really is a fuzzy, they can zap it then. Right now that would get me kicked out of the trial.

In a directly conflicting opinion versus my radio-doc, my lung-onc is 95% certain that spot in my head is the result of tissue necrosis. Now that is a word that sounds just like it means – dead tissue. Otherwise it would imagenot have remained stable. Amazing how two different docs can have wildly conflicting opinions. Advice #2: question everything. Oops, that’s the same piece of advice. Just goes to show how important it is. Nobody knows everything and certainly different docs do not always agree. Obviously you have to be be your own advocate.

OK, now the fun stuff. Last Saturday my wife and I were invited as guests to the Moores Cancer Center fundraising gala. They raised imagealmost $2mil in one night! Now I know some of that was prearranged but it was still amazing. Proceeds will be going to additional immunotherapy research, perhaps one of my options in the future. Here is a picture of me and Kim, obviously enjoying ourselves.

Finishing this up from my hotel room in Arlington, getting ready to head up and meet a bunch of other lung cancer peeps. My heart’s a fluttering.

Business as usual. Day at time.


9 thoughts on “May 1, 2015 (Fri) – Life is a Box of Chocolates…

  1. Thank you for this post Craig!! My father-in-law, 20 years ago a heavy smoker, is in the process of discovering what “a spot on a C-scan” means … Caught on a routine scan to look at his aorta after bypass surgery several years ago. People our parents age don’t seem to ask many questions and sometimes think doing so is insulting to docs they are depending on. We are going to have to have a conversation in the next week about how important it is to ask LOTS of questions and fervently advocate for yourself. I am constantly researching the latest approaches to cancer treatment and what looks promising and near term vs. a few years out. I don’t think there’s been a more hopeful time for people living with cancer of all types … Amazing strides in just the last few years!! Stay strong and hug my cousin for me!

  2. Thanks for the update Craig…. Daily positive thoughts continue for you! Enjoy your weekend. What a wonderful opportunity for all of you to meet each other.
    Chin up and straight ahead!!

  3. You continue to amaze me Craig…..taking the time to update your blog when you could have been sleeping or watching a movie on a tiny seatback screen while crammed into a seat waaaay too small for even shorties like your wife and I. Sounds like you are being forced to enjoy the good chocolates along with the duds. No doubt your blog has helped/is helping many. Thanks for the update and as ALWAYS, positive thoughts being sent your way. Enjoy your weekend Craig and glad your conference is in Virginia and not Maryland.

  4. I’m a tad confused (nothing new) but have decided to invest in A-Team stock and if I make any $$$ donate to cancer research, lol!
    Our family has supported Norris Cancer Center
    for over a decade and advances in that time span seem miraculous to me. Keep the faith as you are amazingly resilient!

  5. Hi Craig. We think about you every day. Thanks for keeping us informed. Have a great trip and win this battle! Love, Mike and Ann

    Sent from my iPhone


  6. Sounds like the decent news outweighs the uncomfortable news. “Tissue Necrosis” – who would have ever thought those two words would have such a loverly ring.

    I hope you learn a lot and party hearty in DC. Wish I was there too.

    As for me, I’m awaiting biopsy results to see if I get to join a CO-1686 trial. Would that be the C-Team?

  7. Thanks for the update Craig. Have a great time on your trip. Lot’s of new options in your future, and just think, you helped raise the money to support the research. Good on ya as they say in Austrailia.

  8. You are making a difference in this world, Craig ~ Keep doing great things for yourself and human kind 🙂 In 2005, the basic scan ordered by my dr almost killed me bec they couldnt see everything that was there in my lung – it should have been a hi res>>> ALWAYS a hi-res ,,,, I learned a valuable lesson when you are in a serious health situation …always get the Dr to order the Hi – res! #getthedamnfuzzies! (ok Ill get down off the soap box now) Hugs!

  9. Great news about your friend upstairs. We just had another small spot pop upstairs too. We are watching it also. They aren’t sure what it is.
    I await lots of info from the conference. Can’t wait to see if any videos are on lungivity.
    His luck Craig
    Martha in Iowa


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