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PostPosted: Mon Feb 02, 2009 8:37 pm 
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Joined: Mon Nov 22, 2004 9:22 pm
Posts: 6
Location: Mount Laurel, New Jersey
Hi,
It's been a very long time since I've posted on this site. Back in 2004 when my mom was originally diagnosed, I couldn't get enough of the message boards and learned so much.

It is now 4 1/2 years since my mom was diagnosed with inoperable NSCLC Stage IIIB. Yes, she still has the tumor is her lung. It has shrunk over the years through various chemos (drips and oral) and radiation. She has survived a lot longer than others with her same diagnosis and we are so incredibly lucky. She is doing well, just tired a lot, but no pain or other mets in any of her body (besides the original brain mets she got early on...caused by being placed on a "Platinum" chemo...but that's another story...)

Her doctors really don't know what to do for her. She's already been on so many different chemo's they are running out of options. They say that if we do nothing, the tumor will continue to grow. They want her to start chemo again with Taxol/Avastin.

This is my question. Is there anyone out there who is a 4+ year survivor who has been given this chemo combo? Not as a first line treatment, but now, after many years of already ingesting so much poison into your body. This combo is powerful stuff and I'm thinking that it shouldn't be given to someone this late in the game. Her body's defenses are weakened from years and years of treatment and I'm afraid her body won't be able to rebound once again.

Any advise and/or opinions are welcome. And, if I got any of my facts wrong, please don't hesitate to correct me.

_________________
8/04 -Mom, 62, now 63! Dx NSCLC, Stage lllB, inoperable.
9/13/04 removal of node on left side-cancerous.
Chemo (Cisplatin and Taxatore) started 9/24/04, 3 cycles.
9/28/04 appt. with Ayurvedic Doctor.
Prescribed: Herbs to make tea: Marshmallow Root and Devills Apple, drink a quart/day.
3 different transdermal creams: Ashwagandha, DGL and Tulsi.
Sesame oil message, Organic Foods only, Trinity water (its PH balanced), 1 stewed apple each morning before breakfast with 10 almonds (that were soaked previously overnight).
No adverse side effects from Chemo after starting regime.
11/5/04 chemo ended.
Two nodes on left side gone, shrinkage of tumor on right 26% (went from 6.8cm to 5cm)
Drug Trial for R115777 to being 12/2/04.
Radiation to begin 12/2/04. (30-40 rounds)
Ayurvedic dr. recommends adding Purple Basil to tea.
2/4/05 Radiation completed
About 6 weeks after radiation completed, tumor continued to shrink. Only a little over 2 cm. Mom feels better than she has in years!
6/09/05 MRI showed 6 mets to brain. WBR begins immediately for 14 rounds. Steriods prescribed. Taken off drug trial. Started taking Asian mushroom herbs: Coriolus VPS, Maitake and Reishi
7/5/05 CT scan shows tumor is continuing to shrink. Now only 1.8cm
2/2/09: - It's been a while since I have been on this site.

Update: My mom is hanging in there. It is now 4 1/2 years since she was diagnosed. Still has the tumor in her lung. I can't remember all of the chemo's she was on in the past few years, but they ran the course from traditonal chemo or the oral chemos. With each treatment, yes, her tumor shrunk, but it is still there.
She is still taking and using alternative treatment (Ayurvedic). Recently went to Sloane-Kettering and they suggested she go on a chemo combo of Taxol/Avastin.
She is tired all of the time, but is not in any pain and as far as we know, no other metastized tumors (she originally developed 7 brain mets after going on the "Platinum" chemo b/c that chemo broke down the blood brain barrier and the cancer got into the blood and traveled to the brain. That is the only way she got the brain mets.)


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PostPosted: Tue Feb 03, 2009 1:16 am 
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Joined: Sun Sep 10, 2006 6:26 am
Posts: 2542
Location: Hawaii
Hi, happy to meet you! This is an IDEAL question for the physicians at cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here.

If you know your mom's NSCLC subtype (adenocarcinoma, squamous cell carcinoma, or large cell carcinoma) you should probably add that info to your question, since that would have a bearing on the options available. Also, if she has any peripheral neuropathy (numbness and tingling in the hands and/or feet) still present from previous treatments, you might want to state that, since there's a chance Taxol would make it worse, perhaps permanently.

About your comment (if I read it correctly) that first-line use of Cisplatin, which can create openings in the blood-brain barrier, is the reason cancer cells were then able to pass into the brain and cause brain mets: Admittedly I don't have much knowledge of, or any first-hand experience with, brain mets since I haven't yet been faced with that problem, but that doesn't sound right to me. Cancer cells don't seem to have much difficulty crossing the BBB, even one that's supposedly intact, and plenty of people are diagnosed with brain mets before they've ever had any form of chemo. What I have read about Cisplatin is that it's sometimes used because it can cross the BBB and treat existing brain mets on its own and/or open the way for other anti-cancer drugs to follow. Again, I'm not saying you're wrong, but just taking you up on the offer to speak up if something doesn't sound right. Maybe this is another good question for Dr. West.

Congratulations to your mom and Aloha to you both,

Ned

_________________
Ned is just my nickname, though it would be nice to merge it with the other meaning eventually...

Aloha means "Hello, goodbye, love, compassion, welcome, good wishes." It means belonging to others with a common humanity. It's defined better as a feeling in the heart than by words.

Dx NSCLC adenocarcinoma IIIb Sep 2006, now stage IV. Taxol+Carboplatin+Avastin 4 mo., Avastin 8 mo., Tarceva 16 mo., Alimta 12 mo. (sometimes combined with Cisplatin or Carboplatin), Navelbine since Feb 2010, 10 sessions of WBR in March 2011. See My Cancer Journey: viewtopic.php?p=351369#p351369 — UPDATED 03/05/2011.

Above left: Our golden retriever Rosie, who joined the family on 3/5/08 at the playful age of 2.

Below: Hannah, our golden companion 1994-2007.

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