4 plus years stage 4 NSCLC with ALK mutation

Hi petes,
Welcome to Grace. I’m so very sorry your wife is dealing with this diagnosis.
Alectinib is definitely worth a try. Also alimta may be a choice especially if she hasn’t progressed on it

I’ve found it to be a very risky business to 2nd guess oneself after the fact. No one will ever know whether it was the drugs or the radiation that stopped your wife’s brain mets. I tend to believe that an assumption that it was a little of everything that did the job so there’s really nothing to regret. Sometimes the games we play with the mind are a very effective treatment for patients and loved ones, ;)

Another hopeful way to look at the new treatment is the fact that those who respond well to treatment tend to respond well to other treatments…responders respond.

All best,
Janine

Hi petes,

I am so sorry to hear of your wife’s LMC diagnosis, but it’s great that alectinib appears to have helped. As GRACE’s Dr. Doebele stated:

“I think LDK378 (ceritinib) does have better penetration into the brain than crizotinib, but we don’t have any data yet on whether LDK378 is good at preventing or delaying leptomeningeal disease. The most complete data published so far is from alectinib which showed good responses in the CNS that were quite durable.” – http://cancergrace.org/topic/leptomeningeal-carcinomatosis-and-crizotin…

Here are a couple of encouraging reports on alectinib treatment of CNS disease and LMC:

http://download.springer.com/static/pdf/234/art%253A10.1007%252Fs13691-…

http://theoncologist.alphamedpress.org/content/20/2/224.short

I hope her improvement with alectinib continues, and lasts a very long time.

JimC
Forum moderator

Hi Pete,

I’m sorry your wife’s symptoms suggest progression in the CSF. There is a new ALK inhibitor granted access Brigatinib (Alunbrig). It may only be available through the expanded access program, https://clinicaltrials.gov/ct2/show/NCT01947608?type=Expn&cond=nsclc&dr…

I believe Lorlatinib is also soon to be available through expanded access though it appears in the clinicaltrials site as not yet available, https://clinicaltrials.gov/ct2/show/NCT03178071?type=Expn&cond=nsclc&dr…

It’s probably obvious to you but for others reading let me say that the above drugs haven’t been tested for efficacy in Leptomeningeal carcinomatosis though there are growing numbers of people with lepto who’ve benefited from TKIs.

Chemo administered directly into csf (either by way of the spinal cord or into the ommaya reservoir). Problems with that choice include fairly high chance of severe adverse effects, less than stellar efficacy for most, and when give this route the remainder of the body is not treated as effectively as through IV.

I hope one of these pills will allow your wife much more life to live.
All best,
Janine

Hi beeg2017 and petes5960!
I am celebrating my 4 year survivor anniversary this month, ALK+, been on crizotinib, alectinib, and now showing progression to lymph nodes in chest, biopsy still ALK+, so don’t know what drug is next. But we are fortunate to have these and new drugs on the horizon. Best wishes for continued success to you both!!!!

Hi beeg,

We’ll certainly be keeping you in our thoughts for great results from your scan. Please keep us updated!

JimC
Forum moderator

Congratulations on the news! Enjoy the ride and plan on having alternatives in the wings when needed, several years from now!

Janine

Great news, beeg! We’re hoping the good response lasts for a long, long time. And as Janine said, by then there should be additional options if you need them.

Thanks for keeping us up to date.

JimC
Forum moderator

Hi Beeg,
I have a question regarding a remark you made about alectinib. You said that you are supposed to take it with fatty foods. I was wondering if they explained why , because my oncologist never mentioned anything about that to me during the past couple of years that I have been on alectinib. I totally would have done that had I known it would make the drug more effective! Thanks

Beeg, I am literally stunned that this information was not given to me. If it makes such a significant difference then why are patients not being told to consume the medication with a fat soluble meal? Thankfully your pharmacist told you. I was on alectinib for 2 years and am vegan with low fat diet, and I have had brain mets radiated, with new ones now, plus now progression to mediastinal lymph nodes. Have had a lung nodule in lateral left upper lobe for 4 years that nothing has helped shrink. But just managed. Even had chemo and radiation to the lung in 2016. I can’t help but wonder if I had been taking the medication properly if I would have had better results. So a change in drugs is next for me. Thank you so much for the link.

I Lessie and Beeg. I’ve asked our oncology pharma doc to comment on this. We should hear from her soon.

Lessie,

The package insert for alectinib states to take it “with food” in general though a “high fat” meal was shown to increase the exposure of alectinib and it’s active metabolite (that the drug breaks down into) by about 3-fold. So eating a fatty meal prior to alectinib could result in about 3 times higher exposure. This can be variable based on the fat content in each meals and usually dosing is based on just “with food” or “empty stomach” since maintaining specific fat contents for each meal for consistency can be difficult.

Basically, the bottom line is that fatty meals do increase the exposure of alectinib but could also result in higher side effects as well and I would not specifically recommend taking it with a fatty meal unless told so by your doctor. This would need to be considered if dose reductions are needed. The majority of efficacy studies were based on taking with food, not specifically high fat meals so by taking with food in general, you should still be receiving active amounts of the drug and were taking it appropriately.

Reference: Clin Pharmacol Drug Dev. 2017 Jul;6(4):388-397

Best Wishes,
Dr. Walko

Thank you for your prompt reply, Dr. Walco. And thank you for facilitating further information on this matter Janine. I was taking with food per the insert, so that was good. Beeg, wishing you continued success!!