i could really use some encouragement

[Guest Nic]

Hello.

I'm Nicole, I'm 23 years old, and I live in Cleveland, Ohio. My mom, a 60 year old NEVER-smoker was recently diagnosed with NSCLC stage 3b w/ pleural involvement, which they call 4. (which really bugs me, by the way). She has some lymph node involvement, and Mom's onc. says that he is additionally concerned that her hip bones may also be infected, but i don't know what to believe, because she has always had bad arthritis all of her life, worst of all in her hips. In fact, one doc explained that, "you light up like a Christmas tree in your PET scan because of your arthritis".

We are getting treatment at University Hospitals of Cleveland's Ireland Cancer Center, as Mom felt they were much more warm and personable there than they were at the Cleveland Clinic (no disrespect to the Clinic in any way...they're great, too). Also UH ICC is the largest research and teaching hospital in Ohio, affiliated with Case Western Reserve University, which means they have access to some exclusive clinical trials. When I expressed concern about possible undertreatment where age is concerned, Mom's onc. has promised to treat her as if she is a 20-yr-old, and he has stated that he is going to try his best to make this a "chronic disease that you can live with", and yes, of course, that hideous word 'incurable' has reared its ugly head, much to my dismay. That is one awful word--it is misleading and evil, wouldn't you agree? Idealistic as this may sound, I think every person at every stage should be treated for a cure. Yes, I know that sounds very layperson-ish, but I don't care. What other choice do we have when it comes to our family members? I have devoted every fiber in my being to this fight, and I know that my mother has the power to amaze, if she is given all of the right tools. I can't even describe in words quite how special she is...we would need to create her very own message board in order for me to accurately describe her in all of her wonderfulness, and trust me, she is too modest to admit it. She is the perfect definition of a selfless, sacrificing mother of 4 (My oldest sister is 42, and I am the youngest at 23!). She always has been Supermom, even to other peoples' kids!

OK, I'm done gushing on her (for now). I wondered if I could run by everyone her treatment options, since I want to make sure this is considered AGRESSIVE treatment. I welcome your suggestions, advice, uncensored thoughts, and personal experiences.

Option 1: Offer of an exlcusive Phase 2 clinical trial of a drug called XL 647 (aka EXEL 1506), which is being conducted at UH ICC (where we are), Sloan-Kettering, Karmanos, and Stanford. This phase does not include placebo pills, and it also requires that participants have had NO treatment yet. (Mom is leaning toward joining, as her doc. describes her as the 'ideal candidate', and she is very interested on her own account, as well).

Option 2: Chemo (drugs not mentioned)

Option 3: Tarceva

Option 4: Chemo

*we are told that radiation is on hold for now esp. b/c of the pleura, but it remains a possibilty at all times, for a later date if appropriate. UNLESS Mom is currently on the XL drug, then radiation remains on hold. Mom can drop out of the trial at any time, should she decide or need to.

This is prolly the longest post in the world. if you're reading this line, thanks for reading the whole thing! I may not post very much, but I wanted to run Mom's case by you all, because I consider you all experts, and I just wanted to make sure we are on the right track to AGRESSIVE treatment. If there's something I have overlooked, please tell me!

Much appreciation

Nic

[raneyf]

Hi Nic,

Your mom's doctor sounds right on top of things, and very optimistic in trying to treat like a chronic condition. I like that about my doctor too. It sounds like all options are very aggressive. The tricky thing about this is that everyone's cancer seems to be different and responds to different things. I started with Tarceva, but did not respond. I'm having great luck with carbo/abraxane/avastin. Since you don't know what your mom will respond to, I would say whatever she chooses, make sure the doctor is open to changing if results aren't promising after she is scanned a few weeks into treatment.

Good luck - I'm stage 4 and feeling better than I have in 6 months - and I'm still doing chemo.

Raney

[RandyW]

It seems as though the Oncologist is on top of everything. He has laid out all the options. Each one is unique. Each can be stopped at any time if it is felt results are not going to be beneficial. This Oncologist sounds like a great Onc to have. They are being very proactive in all the options. Go with what Moms heart tells her is the right thing to do. I tsounds like there is nothing to lose in any direction she goes.

Incurable. I know and Hate that word too. I have for 3 years and 11 months. Unfortunately, right now there is no cure for this disease. It is considered uncurable. The research is leaning towards chronic first. The research is getting Closer. I have seen so much happen in the last 2 years and the last year since my wife passed away from this. Breakthroughs happen all the time. I know it is hard to believe, but it is true. The Chronic part being treated like diabetes, wher eyou live with it and take daily Meds to control it. Then the cure can be found. There is currently a trial starting up for a breakthrough that a blood Pressure Med has stopped growth in Lab Mice. This was an accidental discovery, but it has been fast tracked by the FDA for trial research.

Sorry if I got a little long winded there. Mom is doing the right thing. The Oncologistr is doing Their very ebst and being WONDERFULLY PRO ACTIVE in the treatment options by explaining the options to you and giving you so many choices. That in itself is good. If Your Mom goes with the clinical trial, Telll her Thanks!! For Being a Pioneer in this fight and Trying something different. That is how this disease becomes CURABLE!! By trying and discovering new treatments that work.

Sending Prayers. Keep us posted as frequently as you want and can. AHng in there and we are here for whatever you may need.

[Ry]

Welcome to the board, it sounds like you are being a great advocate for your mom. Keep us posted on how she does.

Rochelle

[Don M]

Welcome. I think I would go for th trial and bail out later if I had to.

Don M

[fillise]

Sorry you have to be here--but welcome. When my Mom's Onc told her that he wasn't sure he could cure her (stage IV NSCLC with mets to the spine), but he thought he could keep her tumor stable indefinately, she told me that for the first time she didn't feel like she was under a death sentance. That, of course, implies incurable, but it sounds like your mom will get aggressive treatment. Stable is wonderful.--Susan

[Guest Nic]

Wow, thank you everyone for your responses and your support already, and for cheering on Mom and her fight. You guys are really great

It's encouraging to read that you guys think her onc. is a good fit, and that he is getting ready to treat her agressively--this is SO important to Mom and of course, to all of us. He is a nice guy, who has said numerous times: "I always ask myself how I would treat my own family member," which is a very comforting thing to hear. He can be pretty funny, too--he told me "well, seriously, maybe you should get into research" because I have been conducting quite an extensive research and nationwide communication efforts since the day of diagnosis. ANYTHING for Mom; I can't stress that enough. I offered my lung on the spot, and I meant it, too.

Thank you guys for sharing info. with me, and giving me your opinion on the trial drug. There is not a whole lot of information known on it yet, but Mom's onc. is the principal investigator, so I hope he'll keep us on top of everything! She is going to begin taking it on Friday...poor thing is nervous, but also READY to start already! (It feels like it's been forever, because we had two opinions and a minor exploratory surgery to go through).

Please keep Mom (Kathy) in your prayers, and hope that she responds well. You guys are so supportive, and I wish each of you the best, I truly do:) How tough, brave and strong you all are. Wow, you all amaze me!

Nic.