Long Term ALK+ survivor with new brain mets

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April 5, 2015 at 1:27 pm  #1269136    

tallchap

Hi,

Bit of background on my wife:

Non Small Cell Lung Cancer – Confirmed ALK+

Diagnosed: 01/2010
Carboplatin/pemetrexed (6 cycles) – 06/2010
Maintence pemetrexed ( 4 cycles) – to 09/2010
Crizotinib (on trial)
May 2011 – Confirmed Brain Mets
Carboplatin/pemetrexed (5cycles) to 09/2011
Whole brain radio – 10/2011
Gemcitabine
Taxotere (to 04/2013)
Stereotactic radio to Brain (08/2013)
Carboplatin/ pemetrexed (post cycles 10/2013)
LDK 378 / Ceretinib (11/2013 to Present)

My wife is doing remarkable, practically cancer free from the next down. We got the results of a recent brain MRI during the week which shows more activity (mets) and swelling which is starting to show symptomatically (fatigue, balance, seizures) We are controlling the swelling through dexamethasone and are due to see radiology next week. However, I am not sure additional radiation is an option. Some study suggests alectinib can be used after ceretinib to treat brain mets?

Im aware that brain mets are unique to every person and treatment depends on location but is WBR second time round and option?

Thanks

April 5, 2015 at 7:24 pm  #1269138    
catdander forum moderator
catdander forum moderator

It may be an option to do stereotactic radiation to the new or progressing brain mets, it’s usually a more attractive option than a second wbr.

April 6, 2015 at 7:35 am  #1269141    
JimC Forum Moderator
JimC Forum Moderator

My wife and I had faced the same decision about repeat WBR, although in her case she also had significant progression elsewhere in her body. In response to my questions, Dr. West said:

“…repeat WBR is never something we’d undertake lightly, but I’ve done it, sometimes with very good results (I have a patient two years out from second WBR for lung cancer who I saw last week and continues to do well, with no changes in her head MRI just completed, terrific cognitive function (no complaints and clearly as smart as just about anyone), and who also had repeat WBR after less than a year from her first go-round with it. Certainly not a guarantee, but it gives an idea of what’s possible. In this situation of multifocal relapsed brain mets, we’ve had careful discussions, and I don’t believe any of my patients or caregivers who went down that road of repeat WBR ever regretted their decision (and all of them that I can recall having offered decided to do it), though I would have to say that not all had terrific results.” – http://cancergrace.org/forums/index.php?topic=9910.msg78833#msg78833

In the same thread, he also said

“The patients in whom we’ve needed to and have done repeat WBR have been few and far between — in fact, I could count them on the fingers of one hand with digits to spare. And yes, they’ve been selected, because the ones who were progressing in the brain but also had a more marginal performance status left us feeling pretty convinced that a focus on supportive care was the right path to follow. It’s probably misleading for me to make any general statements about what happened with 3 or 4 patients over the past 7-8 years. I mentioned that I have one who did and continues to do well, but I don’t think I’ve had another patient who has done repeat WBR over the 18-24 months, so I just don’t think it’s feasible to speak to much beyond what’s possible. I wouldn’t want to make a hard sell. [continued]


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

April 6, 2015 at 7:35 am  #1269142    
JimC Forum Moderator
JimC Forum Moderator

[continued from previous post]

”I don’t recall a patient debilitated by side effects from it, but we’re covering so few patients over so many years that I just can’t recall many details of the courses of many patients going back more than the past 3-5 years.

To me, the key issue is whether the pace of disease seems set more by the intracranial than extracranial disease. In that sense, if liver metastases are growing faster than brain lesions, I think it makes a strong argument for focusing more on the systemic management. And again, this is presuming that a person is both feeling well enough to pursue more treatment and is motivated to do it, for unclear benefit.”

Good luck with whatever path is chosen.

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

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