Slow, but steady. The results are in from my recent CT scan and 40% resolution has eased on up to 45%. A significant five percent, as the negative side effects (gastrointestinal issues) from LDK378 have increased in intensity as well. Dr. Shaw and I had spoken about possibly moving my dose back down to 400 mg if there had been no incremental improvement in tumor burden.
The Radiology Report is less cheering, although certainly is not what I would characterize as a bad report. It reads:
IMPRESSION: Persistent groundglass opacities in the anterior and inferior left lung and along the right minor fissure. The opacities in the left lung are slightly more prominent. There are no definite new lesions.
It’s all a curious algorithm; this response/non-response thing. “Tumor size has traditionally been estimated from bidimensional measurements (the product of the longest diameter and its longest perpendicular diameter for each tumor)” (quoted from an article in the Japanese Journal of Clinical Oncology) Basically, a linear measurement, which is quite dependent upon the outside diameter of a lesion, is used to estimate volume. Baseline measurements are taken at the onset of a particular treatment, and response (and/or stability or progression) is assessed by comparing successive scans to the initial chest CT. Evidently my earlier 40% (https://lifeandbreath.wordpress.com/2011/12/14/big-four-oh/) was not the cutoff for partial response but rather exceeded it. I should have done my homework. From Wikipedia:
Evaluation of target lesions
- Complete Response (CR): Disappearance of all target lesions
- Partial Response (PR): At least a 30% decrease in the sum of the LD of target lesions, taking as reference the baseline sum LD
- Stable Disease (SD): Neither sufficient shrinkage to qualify for PR nor sufficient increase to qualify for PD, taking as reference the smallest sum LD since the treatment started
- Progressive Disease (PD): At least a 20% increase in the sum of the LD of target lesions, taking as reference the smallest sum LD recorded since the treatment started or the appearance of one or more new lesion
Odd as well is the 5% increase in response coupled with the possible area of greater consolidation noted on the radiology report. Which to me illustrates the limitations of any sort of quantitative measurements; it is all seems a bit hypothetical/ best guess sort of stuff. Data collection. Bottom line, my lungs feel and sound pretty darn good.
The numbers on my labs are closer to normal as well; the oral iron supplement I began taking several weeks ago is helping.
The one concern of the moment is my liver enzymes, transaminases-SGOT and SGPT.
So what is a transaminase? From MedicineNet.com: The transaminases are enzymes that catalyze chemical reactions in the body in which an amino group is transferred from a donor molecule to a recipient molecule. (!)
SGOT is an acronym for serum glutamic oxaloacetic transaminase and SGPT for serum glutamic pyruvic transaminase. Just in case you wanted to know. What is really relevant is that they are enzymes in the liver and elevated values of either can be an indicator of liver inflammation.
My SGOT/SGPT values were ever so slightly elevated the entire time I was on crizotinib. When I went off treatment they fell to normal levels, but soon after my first dose of LDK378, the levels again became slightly elevated. After my dose went up to 500 mg, the values began to rise again. My SGOT level peaked at 84 a week ago and is now down to 67. The normal reference range for SGOT is 9-32 U/L (units per liter of serum–the liquid part of blood). My SGPT was at 79 last week and this week topped out at 102. Normal reference ranges for SGPT are 7-30 U/L.
Hopefully the SGPT has peaked and will start to go down. In the meantime, a glass of wine in the evening is not an option. Sadly, we’ve been invited to a wine tasting party this very weekend (for the oenophiles out there, all with a rating of 93 or above). When I asked Alice (Dr Shaw) if I’d be able to participate, she said, “Wine tasting is just sips of wine, right?” “Well…” I replied, “it can be done that way”. So I’ve been given clearance to slosh a bit around in my mouth. Just like the real sommeliers. I don’t believe I’ll be able to bring myself to spit it out though; that just wouldn’t be right.
life and breath: outliving lung cancer 
Dearest Linnea,
While I am thankful that the results are so encouraging, I must confess that, as a wine snob, the “sloshing” would prove more challenging, even under the best of circumstances. Still, I wouldn’t want to contradict Dr. Shaw’s recommendations. May each sip bring greater healing!
Blessed “Sloshing!”
Tracy
Tracy, I believe I did indeed sip my way to greater health–feeling fabulous.
Linnea
So happy to hear your promising news. Enjoy your wine tasting, and being with new friends.
Cheryl
Cheryl, thank you and hope things are going well for you.
Best, Linnea
can’t imagine wine tasting being a light weight sport 🙂 I am glad to hear that you have received good news; things are moving in the right direction, and that is always a good thing with this beast. sending love
Lorraine, I’m feeling stronger and hence more hopeful each day.
Love, Linnea
Congratulations on the further improvement. I hope the opacities will be less prominent again next time.
If though the measurement they’re using might understate the actual improvement, any further improvement, overall, is a good thing. Keep up the good work and do what you can to keep your liver happy! (Not pickled-happy, of course — healthy-happy.)
Craig, with cancer, pretty much all news is good news as long as it’s not bad news (does that make any sense?) And no pickling occurred as a result of my nightlife 🙂
Linnea
Linnea, What great news – that the LDK is definitely working! Stuff the percentages, go with the direction and how you FEEL. Surely a couple of sips and swallows for just one night can’t hurt … especially if Mr Parker gives it a >96 score. Life is for the living as you well know and have frequently advocated with great gusto previously … Savour those pleasures! Love, David
David, such fine advice all the way around. I also confess an enduring fondness for the particulars of your native tongue–ie: Stuff the percentages. Bloody lovely.
Love back, Linnea
Linnea, thank you for all the definitions. You are always educating yourself, and I’m proud of you. For a layman like me, it becomes confusing at times–but I’m trying to understand. Always read every word of your blog. Thank you for keeping me and others informed. I will continue praying for you until the day you are totally healed!
Love,
Carolyn
Carolyn, I am every bit a layman myself, and, as you have ascertained, educate as I go. Otherwise, there are times I would have no idea what I was writing about. And keep up the good work on my part 🙂
Love, Linnea
Hi Linnea- you rolled all good numbers, sounds like. The liver transaminases are hopefully just minor, transient issues. From what I remember, they had to get pretty darned abnormal before anyone got too excited. And those numbers on the wine bottles- well, they just argue a bit vociferously for slight sipping privileges. I am currently on self-imposed temperance (the sequelae of mourning; e.g., lovely acid reflux), so enjoy those 93-percenters for me! Continued good health my lovely dearest Linnea. I think about you every day and (literally) wish you well.
Joan
Joan, it is true that it is hard to get anyone concerned about labwork–even when all those flags look a bit worrisome to me. The good news (to follow!) is that most of those flags have been lowered, so I can calm myself as well. And I’m thinking about you daily as well–have you found any of those magical white sticks yet?
Linnea
Good news on the flag reduction!
And oh heavens, yes, you got me hooked. We are having a very mild spring, so the fates would have it, and right after your descriptive temptation I trotted down to the beaver dam. Turns out they have been verryy busy. So I now have samples!
Love,
Joan
If you have ANY respect at all for Blueberry Hill and parties down in the bistro, you will NOT (I REPEAT NOT!) spit out that wine!!!!! I mean really………………
Take care….we love you.
My dears, have you any, I mean any, doubt how I would proceed in such a situation? Our friendship has been built on more than a hill–values, common values are part of what we share.
Love, Linnea
spitting out wine – I thought that only happened when you were aiming
for someone or laughing really hard…. reading the medical stuff is often confusing for me but I clearly understand “Bottom line, my lungs feel and sound pretty darn good.” and to that I hold up a glass of wine and toast you
Amy, I’ve got swallowing pretty well mastered; my issue is hanging onto the damn glass. That’s the way in which I generally ‘toss’ my wine. And the bottom line is a good one. Love you girl.
Linnea
Knowing the participants at the wine tasting, I sincerely hope none of the spitting was thru the nose due to laughing too hard. Nonetheless a very high dose of endorphins can’t be all bad.
Sally, there was indeed a bit of chuckling. I tried to temper my comments to the company and got out of hand no more than once or twice. I will privately email you a photo of the happy host–as his left hand woman (my seat assignment) I can assure you he had some fun. The hostess was in fine albeit controlled form as well. We, bien sur, missed you.
Love, Linnea
Linnea,
So glad that you continue to feel so well and that you had another good report! I am very impressed with your grasp of all of that complicated science-y stuff. My head spins at it all, but I’m very glad that the bottom line is you’re doing well and able to enjoy a slosh of wine (or two.)
Would love to see you in person sometime soon. I’ve been busy training for The Boston Marathon… running for Team Lung Love! But never too busy to make time for you. Can we make a plan for one of your Boston Mondays??? Would love that if you’re up for it.
Lots of love,
Julia
Julia, so good to hear from you. I would love love love to make plans–I will get back to you in the next day or two (consult with Dave’s calendar). I might just have to spectate at the Boston Marathon this year; cheer on my good friend Julia and Team Lung Love!
Love, Linnea
I had never gotten to read this post, but I loved it even more than the last, more recent, to which I just responded. Definitely agree with the no spitting! Huh??!! What a waste!! Anyhow, so glad you’re feeling well! Wonderful news! Along with Aunt Carolyn, I continue to pray for you and your post continues to remind me and inspire me. Thanks for sharing!
Love,
Carol Ann
Carol Ann, good to hear we belong to the same school of thought (regarding spitting). Hope you are doing well and I appreciate your good wishes.
Linnea
Hello, thank you for writing this wonderful blog. My mother is also undergoing treatment for lung cancer. I was wondering if you would mind sharing the type/brand of iron supplement you are using. My mother recently began carbo/alimta and is slightly anemic. Her oncologist hasn’t suggested iron supplements yet, but I plan on asking about this at her next appointment later this week. Thanks!