I've lurked around here for a while and think it's time to introduce myself (well, really my wife), and to ask for advice.
She turned 50 last year and has always been very fit and healthful (never smoked or been around smokers, daily exercise, long-time veg*n, etc.) Last September she began having odd symptoms. After a tragicomedy of errors (2 misdiagnoses, etc.) at San Francisco General, I took her to UCSF Parnassus where they determined that she actually had stage-IV NSCLC, with lesions on her liver and on some bones (spine, hip). She has the EGFR mutation but apparently it has sub-mutations.
After 3 weeks in the ICU, they were able to stabilize her enough to handle her first infusion of chemo (Carboplatin+Alimpta). She was discharged after 4 weeks and has been home since. She just finished her 6th and final infusion and will be switching over to maintenance of just Alimpta. She tolerated the chemo just fine, although the support drugs (Zofran, Neulasta, etc.) caused her trouble.
Her oncologist is at the Diller Family Hospital at Mt. Zion here in SF (part of UCSF) and he was also the attending physician on the oncology team while she was at Parnassus; he's a very sharp guy. She's going to also be seen by an integrative oncologist next week, for additional advice.
She's back to daily exercising. She's eating only organic food and is mostly vegan (with 2 or 3 eggs a week). I'm making fresh vegetable juice every day with carrots, beets, ginger, fresh turmeric, etc. We're thinking of adding medicinal mushroom extracts.
Her first PET/CT scan 2 months ago showed significant remission, but her second one (last week) doesn't show any further remission in the main tumor, and an increase in nodules in both lungs. Her oncologist just wants to keep her on Alimpta. We're wondering about additional treatment options, such as SBRT or gamma-knife. Can anyone with any experience in these matters weigh-in? Thanks in adva
Reply # - February 3, 2016, 03:15 PM
Hi >,
Hi >,
Welcome to this side of the forums, it's good to have you! I'm very sorry your young wife is suffering from nsclc. There has been recent research on egfr subtypes that aren't as common. Some of these suggest there are egfr inhibitors that have efficacy in certain rare subsets. The following video discusses these most recent findings starting around the 9 mins. But the beginning includes much good background info. http://cancergrace.org/lung/2016/01/08/ar_2015_west_treatments_specific…
It may also be helpful to see the website Dr. West suggests, mygenom...something from Colorado. There are other videos that will be of interest such as the one suggested by Dr. West is linked on below the video.
There's a good discussion about mushrooms here suggesting mushrooms in the diet may be more healthful then given in supplement form. http://cancergrace.org/forums/index.php?topic=5116.msg31274#msg31274
I hope some of this is helpful. Let us know what you need and keep us posted.
Janine
Reply # - February 4, 2016, 06:38 AM
It's mycancergenome.com from
It's mycancergenome.com from Colorado. They wouldn't likely do SBRT if she has growth in several nodules of the lungs and they liken it to whack a mole! You might do SBRT on those and several more would pop up. Chemo is the only way to go right now as it's systemic. They will keep her on the Alimta and see what happens at the next rescan. At that time, they'll likely make a treatment decision on whether to switch or not.
Take care, Judy