One more week off drug. My enzymes continue their descent, with the AST/SGOT now in the realm of normal with a value of 41 and the ALT/SGPT at 100. It’s the ALT that needs to come down more, but the team is confident that I’ll be there by next Monday. The plan is to rechallenge with LDK 378 at a lower dose of 400 mg (the original dose at which I entered the trial).
Just as Dr. Shaw predicted, the radiology report from my scan reads: “No significant change in patchy groundglass opacities and mixed attenuation lesion in the left lung, likely corresponding to lung cancer. Stable two 5mm nodules in the right lung. Interlobular septal thickening in the posterior left upper lobe unchanged, likely represent(ing) lymphangitic carcinomatosis. Stable small pleural effusion.”
Lots of stables and a sprinkling of likely as well–likely connoting a pleasing if unlikely lack of certainty. I’ll just run with it…
I am just about done with the course of antibiotics and I feel the infection has cleared up. However, I am experiencing some new shortness of breath and Alice (Dr. Shaw) confirmed a wheeze in my left lung. Trouble maker, that one (the lung, not Alice). I’d like to believe I’ve just fallen out of shape as I’ve not been walking the past two weeks. I did ask about the possibility of a flare in my cancer while I’m off drug; a phenomenon that has been document in the wash out period for patients coming off tyrosine kinase inhibitors (targeted therapy for EGFR positive cancers). The answer was yes, it is possible but, she felt, unlikely. I can’t help myself. Some people are more comfortable with less information, some of us want to hear it all; the good, the bad and the ugly.
But, there is one very bright if momentary spot of sunshine. Grapefruit. I adore this particular citrus, and I hadn’t had one for four years. Grapefruit can interact in a potentially dangerous fashion with several cancer therapies and therefore is verboten. A week ago we received a bushel of oranges and grapefruit from David’s employer. This time, I didn’t have to look on with envy but could partake. Woohoo!
Glad you are feeling better and love the Royal Copenhagen plate you have your grapefruit on.
Johanna, my mum and stepfather gave me those dishes (my first matching set!) for Christmas.
Congrats on the improvement.
Oh, and BTW, I’m real jealous of that grapefruit you’re eating. 😉
Craig, thanks and eat your heart out 🙂 Living large I am.
I just found your blog and I really enjoy reading your story. Thanks for maintaining it.
I have advanced lung cancer, found out in May 2010 (Boo!). I too have “the alk”. I’m on crizotinib…since Septemeber. I’m very jealous of that grapefruit!
Kim, best of luck with crizotinib. I could give Craig a hard time about the grapefruit but I will just sympathize with you. A couple more days, and I hope to be ‘off’ grapefruit once again!
oops. I meant May 2011.
man, I’m rather jealous of the grapefruit myself! I can’t eat/drink etc etc anything with grapefruit either!!
Jem, yeah, it’s not just cancer drugs. Grapefruit is contraindicated for lots of medication. It’s a shame.
That grapefruit looks really appealing Linnea. Enjoy!
Beryl, thank you, I have!
so happy you will be back on your treatment soon ~ it’s always stressful to have those breaks and wonder what is going on in the interim. I have had a grapefruit in the fridge for a week and keep forgetting about it; I think I will make it breakfast tomorrow and send cheers to you! love you friend
Lorraine, I am eager to be back on. The grapefruit is a good consolation prize :()
A little encouragement on the liver enzyme front – I have been back on 400 mg LDK/d for 3 weeks; today’s labs showed ALT and AST normal and alk phos which had gone way high in me, now 240 so getting close to normal. So, from my study with an N =1, you should do fine when you go back on drug. Being off drug is scarey but my scan after the week off showed “stable to mild progression” with the usual radiologist double-speak so no huge rebound of disease. As Dr Camidge says, he’ll give me the benefit of the doubt and call it stable for now. Hopefully, you will be back on drug soon.
Gene, good to hear that you are doing well at 400mg and that the ALK phosphate is close to normal again. I will sleep a little easier once I am on again (not literally, I actually find the LDK gives me some insomnia–in addition to eating grapefruit, I have been sleeping like a baby this week.)
Hope you are better soon. I have progressed a bit on the Crizotinib and have been off the trial since Feb 8. A little scary, but I too have been relishing the grapefuit. Have had at least one a day–am ready to get back on the meds and off the citrus–even Texas grapefruit.
Ellen, progression is a heck of a way to have some grapefruit. Hope that you also get back on treatment and go cold turkey on the grapefruit soon.