Hello and thank you all for caring!
- Wife was was diagnosed in April 2011 with Stage lllB NSCLC, EGFR+, exon 19 deletion,
- Started Tarceva May 2011 and remained stable until December 2013,
- Failed on Alimta / Carboplatinum, back on Tarceva for 3 months,
- Tested positive for T790M mutation,
- Started trial of Clovis 1686 August 2014, adjusted dosage down to 375 BID - thoracic cancer reduced 65% & stable,
- Brain metastases discovered September 2015 - Leptomeningeal Carcinomatosis “too numerous to count” (not good, we know),
- Spinal Puncher + MRI shows no spread to spine,
Recommended Treatment Plan: 10-day course of whole brain radiation + continuation on Clovis-1686.
QUESTION: Generally, does this make sense at this point? Has anyone heard of alternative ideas given Lepto but stable on Clovis?
I know WBR is harsh and we would greatly appreciate any words of wisdom you might be able to provide.
Take Care,
Digby
Reply # - September 13, 2015, 01:02 PM
Hi Digby,
Hi Digby,
I'm sorry your wife has developed brain mets. The lepto is more difficult to diagnose without the spinal puncture diagnosis and appropriate to question in light of symptoms pointing to lepto, however there is no real need to force the invasive spinal puncture diagnosis since WBR is the norm for many brain mets as well as lepto. So yes WBR makes sense at this point, it's still considered the best standard at this time.
There are many words of wisdom from those who have been there though you may need to do a search to find. I'll start you off: http://cancergrace.org/forum/lung-thoracic-cancer/lung-cancer-complicat…
http://cancergrace.org/lung/category/lung-cancer/general-lung-cancer-is…
In the meantime I'll look for some specific passages from the links above.
Best of luck,
Janine
Reply # - September 14, 2015, 09:08 AM
Hi Digby, just want to share
Hi Digby, just want to share experience. My wife was first diagnosed in late 2011 with egfr del 19 too. She was diagnosed with multiple brain mets and leptomeningeal Carcinomatosis enhancement in late 2012. She underwent the only logical option of WBR immediately. It was not easy particularly in the 1st 6 months after the radiation but we are very thankful that it seems, in conjunction with EGFR TKI, to have kept the disease at bay since then. I can fully relate how scary it can be as you try to navigate this difficult journey. While everyone would respond differently, I just want to emphasize that there are reasons to be hopeful. Our thoughts are with you. NJ
Reply # - September 14, 2015, 02:16 PM
Thanks NJ, as you know it's
Thanks NJ, as you know it's so important to get some feedback from others who have been there.
digby, NJ is right about the fatigue with WBR. While some don't have particularly big problems with it some describe is as debilitating for some time before getting better. But like NJ said it's can be well worth it.
This is a statement from one of our wonderful contributors, so sadly now passed, certain spring, she had wbr radiation and was kind to share her experience with others, "Thank goodness. I am so glad to hear they have decided to treat your wife with radiation (sudden change of heart? input from other doctors?), and so promptly.
The treatment is strange for the patient in that there are no side-effects at the time (or not for me - I can only speak from my own experience). The main side-effect is profound fatigue, which takes a couple of weeks to really bite, and then continues (again, in my case) for something like six to eight weeks. I'm afraid your wife's hair is likely to fall out if it has not done so already with chemo. I had an MRI after three months to check the results. These take a while to show up, and some people on GRACE have been disappointed not to see the brain mets disappear. In fact what you want is for them to stop growing and stay stable.
Here's a list of GRACE posts relating to brain mets that might be useful. I've put the one on symptoms at the top:
http://cancergrace.org/radiation/2010/09/13/radiation-faq-what-side-eff…
http://cancergrace.org/radiation/tag/wbrt/ "
http://cancergrace.org/forums/index.php?topic=11139.15
Best of luck,
Janine