Good Luck Gail!!!! Still my hero!
Hi all and thanks for your thoughts and good wishes.
Yes, Janine, that's the correct trial.
I am 9 days in, taking 750mg morning and night. First scans will be between 5 and 6 weeks. Bit hard to know what are lingering tarceva/WBR side effects, and what are CO 1686 side effects. Still tired, no appetite, headaches........
Trying to work out my appointment schedule so I can factor in a holiday - probably a cruise to South Pacific islands, even though we don't much like cruise ships, seems a low impact option. Trekking around Asia probably not feasible at the moment.
Dr West - so surprised you do t have CO 1686 avaiable yet. You are the leading light!
Thank you so much for the update, Gail. . .and very much looking forward to more to come. . .
I've been following your posts with great interest, Laya, and as someone who gets around only on crutches, but who likes traveling, I can confirm that cruise ships are a low impact way to travel. It's the only way I can get around these days, so I'm all in favor of it. Hope you find it pleasurable, even though it's not trekking.
Well, CO 1686 working wonders on lung and liver. But unfortunately not in the brain where one CT identified met has grown from 3 mm to 1 cm since the last scan.
Off for an MRI on Friday, with Steriotactic radiation and surgery being mentioned as options. Not happy,
But what happens if the MRI shows multiple mets again. I've already had WBR. Is the fat lady singing?
I'm sorry to hear about the CT results on your brain met. I hope that you get good good results from your MRI. It's not that unusual for one or a couple of brain mets to appear after WBR, and stereotactic radiation (and at times surgery when appropriate) can successfully treat them.
If there are more mets, repeat WBR is not usually recommended, especially since your first WBR was four months ago. One option might be pulsed Tarceva, since I believe from your previous posts that you had an EGFR mutation.
Good luck on your MRI; we will be hoping for the best.
<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>
Sending you good thoughts, Gail. . .and fingers crossed that this is a solitary brain met that will get zapped.
There's no "standard" answer to that question. On occasion, we have done repeat whole brain irradiation and achieved good results. It's not something undertaken lightly, but if it's the only option, it can be feasible, especially in someone with a younger, resilient brain. Ideally, you don't want to test that, but...
Dr. Howard (Jack) West
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
I have been following your posts and I just wanted to let you know I think you are an exemplary fighter with a beautiful positive attitude. Keep fighting for all of us rooting for you and for those who also fought valiantly and lost. I'm praying that they are able to tackle this brain met and it is just a solitary remnant.
My very best wishes to you. Bob
Hi Gail...I think of you and all the Gracer's, so often, but hardly come by to wave, anymore. With all the latest reports and good happenings with CO 1686, I specifically came on to find out if you had gotten into a trial and was relieved to see you had. Your brave soul makes me smile and all your adventures make my heart happy. Thank you for being and doing all of it. Keep kicking cancer's ass, gn-21. :wink:
Sending hugs filled with support and respect. - Megan
I've been following you on GRACE, Gail, and want to tell you how glad I am you're in a trial. I like that you travel so much. I, too, spend episodes between various treatments and surgeries (lung in Dec., breast in April) on cruises. Because I'm on crutches, I can't trek like you, and have found cruises a satisfying travel alternative. Hope you have a good time on your South Pacific cruise--I went on a Singapore-Singapore cruise in March (stops in Phuket, Myanmar, Malasia, etc.) and enjoyed it immensely. Keep up your spirits--you keep mine up, you know.
MRI showed 2 brain mets, only one of which causes them concern. They are not 100% sure it's growth as apparently it could also be blood round the met post WBR, but they say it is unusual for lung brain mets to bleed.
So SRBT it is. Grateful it's not surgery, as I may well have refused. Have frame made tomorrow, treatment next week. They are checking to see if I have to come off Clovis for the radiation.
Overall health deteriorating though because I am not eating. 41kg and still on 1500mg. The ASCO conference reported on efficacy at very dose levels, and there was no dose higher than 1000 in the report
I have actually asked them to consider a dose reduction. They are reluctant because they think enough Clovis might be getting through to help manage the brain mets.
QOL gone downhill though and I don't think I am prepared to tolerate it. The old QOL vs living dilemma.
Thank you for all your responses and continued interest. You should all come on my next cruise with me.
May have rad the chart wrong. Top daily dose 2000mg
Wishing you well Gail thanks for keeping us informed ,very encouraging to know that CO1686 has done a job on your tumors in such a short time hoping that some crosses the BBB also
Hugs and good luck with radiation