Any Opportunity to be Proactive now that Xalkori has Established Some Control? - 1262117

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bdmlu
Any Opportunity to be Proactive now that Xalkori has Established Some Control? - 1262117

Xalkori has rendered all my son's ALK+ NSCLC below the neck undetectable. He had primary right tumor, pleural effusion, and mets to left lung, neck and chest nodes, sternum, pelvis, spine. He still has many tiny brain mets that are improving since WBRT 2 1/2 months ago. While he's in a position of relative strength, is there any kind of aggressive intervention he might ask his doctors about, something that might improve his chances over just being vigilant and playing defense against any recurrences?

JimC
Reply To: Any Opportunity to be Proactive now that Xalkori has

Congratulations to you and your son on his great response to Xalkori!

As Dr. West and Dr. Doebele stated in your previous thread, there isn't much evidence for the effectiveness (and tolerability) of Xalkori in combination with standard chemo agents such as Alimta (Pemetrexed). In addition, the general preference is to exhaust the benefit from each targeted therapy or chemo drug before moving on to or adding another, since there are a finite number of established drugs. And if Xalkori continues to render your son's cancer undetectable (other than the tiny brain mets), there's no way to judge whether adding another agent is providing any benefit (his scans can't get any better), although whatever you'd choose would add side effects.

I'd also note that the full effect of WBRT can take months to become clear, so the fact that they are improving after 2-1/2 months is very good.

Continued success to your son on Xalkori.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

bdmlu
Reply To: Any Opportunity to be Proactive now that Xalkori has

Thanks Jim. In this case I wasn't thinking brain specifically (sorry, that's my best argument that I wasn't asking the same question again!), but more systemically. I know the book says the options for a Stage 4 are pretty limited, but Dr West and his colleagues seem to be rewriting sections of the book, albeit a little at a time. If my son has, at least temporarily, gained the upper hand I want to take a swing at any aspect of his disease that is possible. For example, does the tumor that expressed his primary cancer, or bone mets, still exist and could they be subject to targeted radiation (or is it as simple as "dude, if we can't see your cancer we can't radiate it", or more embarrassing "why do you want to rekill dead cells")?
A few months ago I was a somewhat desperate Dad. Now I'm trying to be an opportunistic Dad, but if wait, watch and be vigilant is the best he can do for now, I got it.
Thanks for the help, and sorry if I'm beating the same horse over again.

JimC
Reply To: Any Opportunity to be Proactive now that Xalkori has

I was thinking systemically too. It is actually as simple as "you can't radiate what you can't see", although most doctors won't call you "dude". :) If you can't see a tumor on a scan, about all that would be left (if anything) is tumor cells, not a mass. There's no evidence that adding another chemo agent would delay or prevent progression.

One thing for certain is that you are a very caring and attentive Dad, so you don't need to apologize for trying to do as much as possible for him.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

bdmlu
Reply To: Any Opportunity to be Proactive now that Xalkori has

Hah, thanks bro, and no need to respond, just want to say that Andy and his wife will be in Santa Monica for the ALK Patient Forum courtesy of GRACE. They are really looking forward to it.

catdander
Reply To: Any Opportunity to be Proactive now that Xalkori has

I love bro talk ;) and so happy to know your son and his wife will be attending the forum. I hope they will also enjoy some time meandering around the lovely seaside area.
Janine

bdmlu
Reply To: Any Opportunity to be Proactive now that Xalkori has

Catdander, will you be at the forum?

catdander
Reply To: Any Opportunity to be Proactive now that Xalkori has

Unfortunately not. It took a bit of lip biting not to ask, admittedly partly because I lived in the area for some years and have very good friends there. I wouldn't know if I were there for the conference or for the visit. :)

Isn't it great for your son and d in l to have the opportunity to be a part of it, to grow in their knowledge and be a part of his treatment planning. That's what it's all about.

Dr West
Reply To: Any Opportunity to be Proactive now that Xalkori has

Jim's quite right. The real issue is that treatment beyond what gets you to the point of best response may well (and I suspect almost certainly does) lead to harm but no incremental benefit over treatment with the least treament required to do the job. Moreover, when we have a very finite number of effective treatments available, we want to use them wisely, extending them to cover the time line available as thoroughly as possible. When a cancer can develop acquired resistance to the drugs it has seen for a while, why use them before they're needed? That's like shooting all of your ammunition in the first few minutes of the battle. And for local therapy, I suspect it's far more likely you'd do harm than benefit by "shooting blind" and giving local therapy, such as surgery or radiation, without a clear target.

I'll look for your son in Santa Monica.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

bdmlu
Reply To: Any Opportunity to be Proactive now that Xalkori has

Alright, alright. And I was flexed, ready to strangle this thing! Andy and wife Leslie are excited about this opportunity, especially now that he is a patient of Dr Camidge. And Carlea has been an ace!