4 plus years stage 4 NSCLC with ALK mutation

Portal Forums Lung/Thoracic Cancer ALK Inhibitors 4 plus years stage 4 NSCLC with ALK mutation

This topic contains 10 replies, has 4 voices, and was last updated by  petes5960 4 months, 3 weeks ago.

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September 8, 2016 at 4:47 pm  #1288552    

petes5960

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.

September 8, 2016 at 6:35 pm  #1288555    
catdander forum moderator
catdander forum moderator

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

September 30, 2016 at 4:25 pm  #1288816    

petes5960

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.

September 30, 2016 at 4:27 pm  #1288817    

petes5960

So as not to confuse anyone we began alectinib 9/10/2016

October 1, 2016 at 9:48 am  #1288820    
JimC Forum Moderator
JimC Forum Moderator

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-crizotinib#post-1266905

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%252Fs13691-015-0231-9.pdf?originUrl=http%3A%2F%2Flink.springer.com%2Farticle%2F10.1007%2Fs13691-015-0231-9&token2=exp=1475340964~acl=%2Fstatic%2Fpdf%2F234%2Fart%25253A10.1007%25252Fs13691-015-0231-9.pdf%3ForiginUrl%3Dhttp%253A%252F%252Flink.springer.com%252Farticle%252F10.1007%252Fs13691-015-0231-9*~hmac=2d98ed22f0aa451dbf83ac2daef0267d753995ae088c98c273f76cfe628c6a2d

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


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

October 2, 2016 at 3:58 am  #1288828    

petes5960

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.

March 10, 2017 at 2:09 pm  #1290317    

lessie

petes5960, Congratulations to your wife on 4 year survival!!!

March 10, 2017 at 6:24 pm  #1290320    

petes5960

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.

June 30, 2017 at 6:03 am  #1290947    

petes5960

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.

June 30, 2017 at 1:57 pm  #1290952    
catdander forum moderator
catdander 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&draw=1&rank=1

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&draw=1&rank=2

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

July 1, 2017 at 8:04 am  #1290962    

petes5960

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!!

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