I have a newly developed and profound sense of respect for my liver. The AST/SGOT is down to 53 (normal range is 7-30) and my ALT(SGOT) is 43 (normal range is 9-32). This constitutes a mild but entirely acceptable level of inflammation/irritation; the insult and injury has been forgiven. I savored my final grapefruit on Thursday of last week, and last night I started back on LDK 378 at 400 mg.
I experienced a small amount of cramping post dose and felt enough fatigue that I took a nap after breakfast this morning, but all in all, it is an uneventful rechallenge thus far. On Thursday I will have my liver enzymes checked at the local lab; to do so is not mandated by trial protocol, but both Dr. Shaw and I will feel better not waiting until next Monday for my weekly blood draw.
Better yet, Alice (Dr. Shaw) called with some additional news this morning. My tumor response from the last chest CT scan had again been reevaluated, and it has jumped from 45% to 62.4%, which is approaching the phenomenal c 70% I experienced on crizotinib. Now that’s what I call a sweet vote of confidence, or as Mary Poppins might say, ‘just a spoonful of sugar helps the medicine go down.”
Cancer, your little vacation is over. We’re back on track.
life and breath: outliving lung cancer 
I don’t understand all the medical terms but your post seems to be a good news, more hope, more fight but with your good mood, always…You are amazing!!!!! Keep going, keep fighting…you are such a model!!!!
Elisabeth, thank you so much. Fight I will.
Linnea
Yea!
Craig, I’m going to pwn this thing!
Linnea
Yes! I sure LOVE those kind of numbers!!!
I’m so happy, happy, happy!
Lots of strong Swedish hugs from Bremen!
Love, Anja
Anja, I always look forward to your hugs. Thanks so!
Love, Linnea
Linnea– your attitude and optimism are infectious! You are amazing! And I can so visualize cancer being kicked off its vacation!!! Yae!
Mel, no more vacay for cancer!
L
Linnea – Great news!
I on the other hand don’t have good news. I was in the Zalkori?Crizotinib trial at Sloan as I had told once a while back. Since Zalkori was approved and I was doing so well, I decided to drop out of the trial and even had my port removed. We had been watching a sopot on my liver for the past six months, but a recent CT scan showed substantial growth and spreading quickly. I started back on the dreaded chemo last Tuesday with horrible results. It appears that I had an allergic reaction to the Navelbine or Gemzar and have had flu like sysmptoms for a week now. Worst part was that some of the chemo leaked out at the IV sight and I have a severe and very painful chemical burn under the skin. If that’s not bad enough, my doctor is strongly suggesting tah I have a prot put back in. My question for you is – if you are Stage IV, your cancer has metastized someplace. Did the Zalkori have any effect on your metastized cancer? Sloan will soon start a trial for LDK378 and I am almost guaranteed a spot, but I have concerns based your experiences. Do you know about any outcomes of you fellow guinea pigs?
Larry, I am so sorry. Bad enough to have progression, but then to have a reaction to treatment coupled with a chemical burn, oy vey! I might go along with your doctor’s suggestion and get that port back in, even if it is just for the short term.
My cancer is metastatic, but it has stayed confined to the lungs, as is the probable course with BAC. Crozitinib (Xalkori) certainly did a number on the cancer (if you look back at my previous posts, you can see the before and after CT scans–my situation was not good prior to crizotinib). LKD has obviously also been quite effective for me. I would imagine your concerns are due to the fact that you have liver mets? I would just ask lots of questions; as long as your liver function is reasonable mets to the liver may not be exclusionary, but I really don’t know. What happened to me was an uncommon situation–elevations in liver enzymes are always a possibility with treatment, but they don’t often go through the roof. However, obviously the regenerative powers of the liver are phenomenal.
LDK might be a great option for you as well–I’m sure your oncologist will fill you in on the pros and cons. You asked about others–I don’t know of many (it is still early in the trial) but those participants I have met are generally doing well. In the meantime, good luck with your ‘standby’ treatment and I hope there are no more incidents.
Best,
Linnea
Larry, make certain you check out the reply below by Glen Burges, who has personal experience with liver mets.
Best, Linnea
Yay for being back on the cancer killing drugs! It’s got to feel good.
Kim, yeah, beats the heck out of just sitting there and doing nothing!
Linnea
THIS FRICKIN ROCKS!!!!!!!!
Amy, yes ma’am!
Linnea
Yeaaaaaaa A victory for one of us …. is a victory for ALL OF US
I can always count on your post to have a positive effect on me no matter what. BECAUSE YOU ARE SO POSITIVE IT JUST NATURALLY FLOWS OUT TO THE REST OF US..
Annie, thanks for your double dose of enthusiasm. And I assure you I’m not always positive, but I sure like myself better when I am.
Linnea
To answer the question about LDK378 and liver mets – I have had liver involvement from the time of diagnosis. Lesions have resolved with my various treatments including crizotinib but were present when I started LDK378, decreased in size and activity on the first post-treatment scan but no further improvement on the second. I had the same temporary elevation of liver enzymes as Linnea so the mets don’t seem to make a difference there. I asked Dr Camidge about overall response in trial participats on the LDK. Based on the limited data available at this point, it does not seem as high a response rate as with crizotinib but if your new tumor is also ALK positive, it is probably the best option we have. It may be dependent on the type of mutation in your resistant tumor so another biopsy might be suggested. I think that is probably on the horizon for me depending on next scans.
Gene, thanks for being the informed voice here. I believe one reason the results from LDK are not seemingly as dramatic and immediate as what many of us found on crizotinib has to do with the fact that we are not ALK inhibitor naive anymore. And those pesky additional mutations added to the mix don’t help either. Four years ago there were no targeted therapies for those of us with ALK mutations (and very few people identified as such), so to have actual treatment options feels a great luxury.
Linnea
Yeah!!! I love this news and I love your cancer-packing mood! Makes for a bouyant feeling all around and prompts a desire to celebrate! Celebrating,
xoCristina
Cristina, one should never deny the impetus to celebrate. I’m sure you will proceed in a fashion of which I approve (and am currently jealous) of. Cheers!
chicasvenska
yay, most awesome news~thank you for sharing it. I love that your cancer is getting it’s ass kicked by your treatments! Larry, I will keep you in my thoughts ~ it is so hard to say what treatment will work for who, and it seems that it is always a weighing of the potential for good outcome vs the potential for not so good outcome with this disease and the treatments.
Lorraine, I plan to give it a few well placed kicks for sure.
Love, Linnea
Great great news Linnea! And what a good trade for that little bit of grapefruit!
Joan đŸ™‚
Joan, it’s true. Shut one door (or bushel, in this case–so close but oh so far from its resting place in the cellar) and open another (bottle of magic pills).
Linnea
So happy for your fabulous news. You continue to be an incredible inspiration and force for all who know you.
Cheryl
Cheryl, I thank you for the support and the compliment. Hope you are doing well.
Linnea
We hope you can hear the cheer that went up from your Chapel Hill fan club!! Hip, hip hooray!! Rest a lot and keep eating David’s good food!
Dear Pat and Will, I heard you for sure. A few years of practice down in the bistro sharpens ones senses (you don’t want to miss a joke).
Love, Linnea
That is wonderful news. My husband and I love reading your posts. You are such an inspiration to us. I too got my dose dropped to 400mg and feel much, much better. Sooo happy for you!
Chrissy, thanks for the kind words. It would appear that for some of us 400 mg is the right dose. I’m glad you are feeling better as well.
Linnea
Linnea – A question – I noticed that you said you restarted your LDK378 “last night”. I was instructed to take it 2 hours after a light breakfast and not eat again for another 2 hours. I find this very difficult with the abdominal pain and nausea that follows the dose. Are you and others taking it in the evening so that you may feel better during the day? I have lost a good bit of weight because it is so difficult to make myself eat.
Gene Burges
Gene, yes, I take it at night as it is easier. And my oncologist had no trouble with that and as I indicated, several others do the same. You really don’t want to lose weight, so my advice (even though I shouldn’t give medical advice, so let’s just say it’s unofficial) is try taking it at night as well. Also, should that not help, I have significantly less side effects at 400 mg, and I know of at least two other trial participants who have come down to a dose that low (or lower) as well.
Best, Linnea
Thanks, Linnea. I am on 400 mg and hope to stay there as I need adequate penetration into my brain for the mets there. I’ll try the dosing at night and hope that will help. Hope your liver enzymes stay down. My AST and ALT have remained normal with me back on drug for 4 weeks and alk phos is still slowly trending downward – this week 220 from its high >1100 – so, hopefully yours will stay down, too.
Gene
Gene, good luck with changing the timing. I think it makes a big difference. And you know what, if you have to eat within the two hour window on either side of taking the medication (to stave off nausea), I say do it. When it is not your day for an appt. they are not taking pharmokinetics, so there is no way anyone can determine blood concentration anyway.Taking care of yourself and not losing more weight is the most important thing. I’m glad your AST and ALT are holding–I remain encouraged regarding mine.
Linnea
So awesome! This is thrilling, made more special by smelling the breath of fear.
One battle at a time!
Jazz
Jazz, I checked for updates on your blog and didn’t see anything. I hope that means you’re hanging tough and formulating your next battle plan. I’ve always been one who could appreciate the whiff of danger, but the truth is, I prefer to get my thrills other ways; skiing, walking on thin ice, you know. Being a cancer warrior is sometimes short on luster (a definite understatement).
Linnea