4 plus years stage 4 NSCLC with ALK mutation - 1288552

petes5960
Posts:16

New and first time post. Wife diagnosed nsclc 7/2012 stage 4 ALK mutation. Now 57 never smoker and active exerciser. Full 6 treatments carbo/alimta and 1plus year alimta maintenance. Crizotinib about a year forced to ceritinib due to more than 25 brain mets and balnce issues. also at same time, whole brain radiation in 10/2015 mistake??? Brain mets size reduced and stable as of 6/2016. Was it radiation or ceritinib?? Bone mets in shoulder 2/2016 and palliative rad. Bone mets, in hip and spine with doc reading bone scan, 8/2016, believing size increase while our onc believes they are same as last scans. Wife is confused and short term memory loss noticeable along with fast lost of balance and now using walker with quick and long lasting fatigue. Onc doc says nothing to lose by trying alectinib at this point as it may help with bone, spine mets and brain mets which may be cause of balance and leg control. Alectinib to start after brain MRI scheduled for 9/14/2016 to check size of mets to check how alectinib works. Don't want to second guess but maybe no WBR until after use of ceritinib but with more than 25 fear was a factor. I believe she has lasted longer than expectations as mets were already in spine, ribs, adrenals, lymphs and behind retina at initial diagnoses. She has responded well with every treatment but wearing out. I know it could be affects of WBR but fearful of mets in spine causing issues also. Thoughts?? Thanks. Note that up till 10/2015 quality of life pretty good all things considered.

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Reply # - September 8, 2016, 06:35 PM

catdander
Posts:

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

Reply # - September 30, 2016, 04:25 PM

petes5960
Posts: 16

Wife had lumbar puncture and was positive for leptomengeneal metatsis. Again nsclc alk positive and began new alectinib therapy. Have seen marked improvement in 20 days with memory, balance and gait, along with positive weight gain. This drug, alectinib, much easier to tolerate than crizotinib and ceritinib. Very hopeful for some smoother days for awhile. Not many studies for us at this point but if anyone knows about prognosis with alectinib and how long efficacy pertaining to central nervous system please let me know.

Reply # - October 1, 2016, 09:48 AM

JimC
Posts: 2753

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

Reply # - October 2, 2016, 03:58 AM

petes5960
Posts: 16

Want to say thanks to you JimC. Read the positive links you sent and hope we are part of these groups too. But with so small numbers on the positive side I sometimes fall into the trap of fear because there must be many on the negative side. Anyway faith, hope and love and trusting in Christ for all things.

Reply # - March 10, 2017, 06:24 PM

petes5960
Posts: 16

Thanks much lessie. All is still stable, as stable can be. Wife is awesome in attitude and not quitting. Always moving forward. God loves us all...trust in him.

Reply # - June 30, 2017, 06:03 AM

petes5960
Posts: 16

HI all, was wondering if anyone has heard of anything available treatment wise after alectinib with leptomenigeal disease. Alectinib has been doing pretty good but I can see some slow changes with my wife's gate, eye focus, and hearing as well as a cough. My concern is the Alectinib is slowly becoming ineffective...note it's been 10 months since we started this treatment. We do have scans scheduled about 2 weeks but want to be prepared if needed. Thanks much and I know God has blessed us thus far as we keep moving forward...this has been 5 years since diagnosed nsclc stage 4. Thanks again.

Reply # - June 30, 2017, 01:57 PM

catdander
Posts:

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

Reply # - July 1, 2017, 08:04 AM

petes5960
Posts: 16

Catander, thanks much for info and I have read some on those 2 treatments coming. I also understand about the efficacy status regarding Lepto. I do wonder if some signs are due to WBR from 10/15. Sure We will know more after the scans next week. But again big thanks and I will be researching links you proviced. God bless!!

Reply # - December 28, 2017, 06:03 PM

beeg2017
Posts: 11

Hi Petes5960. I’m ALK+ as well. I was reading your forum post and wanted to get an update on your wife’s progress. I’m encouraged by her longevity. It gives me hope.

Reply # - December 29, 2017, 07:09 AM

petes5960
Posts: 16

Hi beege, all going great and wife remains in good spirits. Alectinib has proven to be an awesome targeted therapy. MRI and scans last week were stable, wife still has balance issues along with some sight and hearing problems coupled with getting easily fatigued. But know this too...faith in Christ and we always move forward and get out for walks, though often short. Grab a shopping cart and walk in a store if too cold. We hope you are and stay strong. And if you like let us know how you are doing. Thanks and God bless.

Reply # - January 22, 2018, 06:43 PM

lessie
Posts: 22

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!!!!

Reply # - January 22, 2018, 07:16 PM

beeg2017
Posts: 11

After my first 6 weeks on Alectinib I can honestly say I feel great. I’m back to my old self and have my wind back. I’m exercising again practically at full speed. I struggled a bit the first 5 weeks with dizziness and low heart rate. I’m still a bit constipated and have a touch of ring in my ears but both of these are minor and tolerable. The drug has added a few pounds to my weigh because it doesn’t work unless you take it with fatty foods. I bought a Fitbit and am tracking my heart rate, sleep patterns, water intake and calories. I got my CT scans today to see how the drug is working. I find out the results on Jan 24. Wish me luck!

Reply # - January 23, 2018, 07:36 AM

JimC
Posts: 2753

Hi beeg,

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

JimC
Forum moderator

Reply # - January 26, 2018, 10:05 PM

beeg2017
Posts: 11

Hooray! My scans looked great! The Alectinib is melting away the tumors and swollen lymph nodes. This backs up how I’m feeling. I asked the oncologist “does a quick strong response generally correlate with a PFS longer than the median”? The answer I got back was “generally yes”. So perhaps I will get more than 2 years from this drug! I’m riding a high now!

Reply # - January 27, 2018, 08:09 AM

catdander
Posts:

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

Janine

Reply # - January 27, 2018, 10:44 AM

JimC
Posts: 2753

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

Reply # - January 29, 2018, 02:37 PM

lessie
Posts: 22

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

Reply # - January 29, 2018, 05:34 PM

lessie
Posts: 22

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.

Reply # - January 30, 2018, 10:27 AM

catdander
Posts:

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

Reply # - January 30, 2018, 12:01 PM

dr walko
Posts: 102

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

Reply # - January 30, 2018, 12:39 PM

lessie
Posts: 22

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!!

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