ALK +, taking Ceritinib for 15 months, brain met just grew substantially - 1263508

kirkwood4
Posts:6

Just saw oncologist. One brain met grew substantially to 1.5 centimeter. Several smaller brain mets may have grown marginally (over 20 total, only some may have grown). Did a poor job taking Ceritinib last 3 weeks. So growth in smaller mets may revert to stable assuming I more carefully take every pill. 6 month waiting list for new Pfizer drug. Two options being considered. Targeted radiation for the one larger met. Whole brain radiation. Have heard negative stories about WBR over longer term (for example the grace videos from Santa Monica) and am inclined towards targeted radiation. Age 46. Looking for examples of patients who got WBR 2-5 years ago and are still basically doing ok. Description of what kind of symptoms they have. Or perhaps a Dr. perspective on why WBR might be a reasonable risk/reward trade off on a hypothetical basis. Thanks

Forums
Full Archive

Reply # - April 30, 2014, 02:52 PM

JimC
Posts: 2753

Hi kirkwood,

Here is Dr. West's view on the subject of WBR and its side effects, including a link to the GRACE FAQ:

"Here is a post about anticipated side effects with WBR/PCI:

http://cancergrace.org/radiation/2010/09/13/radiation-faq-what-side-eff…

I don’t think there’s anything specific to be done to minimize risk of side effects. The majority of patients really do fine, despite the horror stories that you may hear about online. Those alarmist stories are easily spread virally through internet communities, and while that is always possible, that is not anticipated. Moreover, the side effects of untreated or undertreated brain metastases is a real problem." - http://cancergrace.org/radiation/2010/09/13/radiation-faq-what-side-eff…

You might also want to read Dr. Minesh Mehta's excellent presentation on PCI/WBR here: http://cancergrace.org/radiation/2011/04/29/dr-minesh-mehta-radiation-o…

And here are some previous comments by Dr. Vivek Mehta: http://cancergrace.org/forums/index.php/topic,80.msg828.html#msg828

And Dr. Weiss offered this:

"When cancer progresses in the brain, this can cause headaches and problems with brain function. The brain controls the rest of the body, so the manifestations of brain dysfunction are diverse: loss of strength in an area, loss of vision, difficulty thinking, difficulty staying awake. It is a mistake to assume that quality of life is better without brain radiation than with it because of the symptoms that progression in the brain can cause." - http://cancergrace.org/forums/index.php?topic=9478.msg75052#msg75052

JimC
Forum moderator

Reply # - April 30, 2014, 09:19 PM

Dr West
Posts: 4735

I strongly suspect that a different second generation ALK inhibitor will prove to be a lateral move. We really don't have any evidence that one second generation ALK inhibitor leads to better results than another.

The references/links provided above offer a lot of information. It sometimes seems as if people talk about WBR as if it's taking someone and shooting them in the back of the head with a shotgun... In fact, most people do very well with it, and there simply aren't enough 5 year survivors of advanced NSCLC, and fewer still with a history of brain metastases. WBR is an effective way to treat a large number of brian metastases, which will likely worsen both quality of life and survival if left untreated or insufficiently treated far faster than WBR will.

To get to the point of worrying about how you'd be doing 5 years later, you need to get to that point alive, and that's very, very unlikely to happen if the brain metastases are not dealt with effectively.

Good luck.

-Dr. West

Reply # - May 1, 2014, 05:56 PM

kirkwood4
Posts: 6

Thank you Jim, Harris, and Dr. West!

Jim, thank you for the helpful links they taught me a lot.

Harris, as I understand it, my having been on Ceritinib (LDK378) largely precludes me from going on the Alectinib trial. Alectinib is probably the next drug to get FDA approval, but it sounds like they are months away from applying to the FDA for approval despite their breakthrough therapy status and pending Japanese application.

I am intrigued by your theory that Zykadia "is subject to efflux from the brain due to the p-glycoprotein pump" but will admit to not understanding it enough to be able to form an opinion.

Generally, I agree with Dr. West that there is not a lot of evidence yet supporting taking one 2nd generation after another as creating a cumulative effect. We are probably 2-4 years away from having evidence on that one way or another.

But then I am hopeful for Pfizer's 3rd generation drug and there is no reported evidence on that at all. So my hopes and fears are not always evidence based (especially since so little evidence has existed for the last four years of decisions).

Dr. West, I appreciate that it is better to be alive in several years with annoying, possibly serious, side effects than to be dead. I guess I am hoping that a targeted radiation therapy is a viable option. Dr. Camidge's comments about dementia in the videos from Santa Monica really struck a soft spot for me. I respect your opinion very much that most patients do well with WBR. Thank you for sharing it.

I was hoping to hear one or two anecdotal examples of patients 2-3 years down the line say that WBR was not that bad. But I suspect you are right that we are in one of those historical times when looking backwards for examples does not help in making forward looking decisions. Sometimes, it just stinks to be a lab rat.

If my doctors say that WBR is the best choice, I will listen & respect that. It would just be nice to have some anecdotal examples to ease my fears. Thanks again.

Reply # - May 4, 2014, 09:32 AM

Alissa613
Posts: 3

My 52 yo husband had WBR in August of 2011. The radiologist was amazing. He said that with this he felt he could guarantee 2 years clear of brain mets. And he was right.

Side effect were hard, but not intolerable. The main one was a serious fatigue lasting several months. It happens over time and gradually gets better. It was worth every second!

My husband is still here. He has just recently discovered there are new brain mets. The quality of life we have had over this time was worth it for both of us.

Reply # - May 4, 2014, 10:07 AM

luke
Posts: 101

Hi kirkwood4

My dad also underwent WBRT for a single fairly large brain met almost 3 years ago. The decision to go for WBRT over Gamma knife was because there was suspicion of micro-metastasis.

Side effects were indeed tough: nausea and profound fatigue but they got better with time.

My dad's still with us. Latest scan shows no disease in the brain.

Reply # - May 4, 2014, 10:27 AM

carrigallen
Posts: 194

I agree that the toxicity of whole brain radiation seems to be rather over-emphasized. Some patients have a morbid aversion to whole brain radiation, which is 'penny-wise but pound-foolish' - often the risk of dying from recurrent brain metastases is much higher.
In this type of situation, I think it depends on the actual MRIs. If there are multiple new lesions (you mentioned 20?), then whole brain seems most reasonable. If there is primarily one new enlarging lesion, then perhaps stereotactic radiation would seem most reasonable.

Previous PostNext Post