SDianneB Posted November 16, 2005 Share Posted November 16, 2005 Michael Jackson, Robert Blake, and Di. Ha. KIDDING!! Not that kind of trial for me! Got the results of my CT scan following cycle #10 of oral Topo, and it worked amazingly well except for one thing. First though, the really good news is that my chest - both sides - is free of cancer, and the radiation scarring is actually healing gradually, so my chest looks better and better with each scan. Also, there is nothing new showing up which is a very good thing. The problem is the pancreas that has a small mass that developed a resistance to the Topo. Strange, since everything else was responding so well! Actually, there is necrotic (dead) tissue there, so it was responding, but wants to keep growing, albeit very slowly. So, the Onc. felt that more Topo would just leave the door wide open for this spot, and put me into another trial. This one is a real trial though, as opposed to the Topo which was a study of the efficacy of oral vs. IV administration. This drug doesn't really have a name -- they call it Synta (after the company that makes it) STA-5312. Here's a URL where you can find a little about it and the trial: http://clinicaltrials.gov/ct/show/NCT00088101?order=1 There is something in it that prevents it being ejected by "bad" cells, so it hangs in there and zaps the cancer. The Onc. is fired up about it, so I was good to go on her recommendation. Next Monday (Nov. 21) I have what's called a "MUGA" - yep. Sounds just like it looks! (Like what we'd call a "mugger" here in the south!) I'll also have to finally give in an have a port put in, but even that's ok, because I was extremely fortunate during the 18 months since this all started to have only had 4 IVs of Carboplatin - the rest was all oral. So, it's going into strange territory one more time. At least if I get through the MUGA! That tests the flow in and out of the heart, and so far, my heart function is the most healthy thing about me! The Research nurse and Onc. are very positive about this, and so am I. I won't start the actual infusion until the week after Thanksgiving, and won't know about the dosage I'll get until it all starts, but will keep you filled in. It's a M-W-F infusion, week off, M-W-F infusion, week off cycle -- two of those and then a scan. Besides all that, my blood counts were terrific. In a week, my platelets had tripled, and with this week and next week off chemo, the Onc. says I'll probably be back to normal in a few days. I'm strong as an ox -- good genes I guess! I'm still feeling good and still working too. I've had some minor discomfort when I sleep in one position for too long or twist myself the wrong way, and I'm taking Protonix and Aleve twice a day which is keeping that all under control. Once I find out more, I'll let you guys know. I'm just so grateful to be in such good hands, and in one of the few places in the country where I can have access to a drug like this. Di Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted November 16, 2005 Share Posted November 16, 2005 Your news is really good!! I bookmarked the site for future ref. Thanks, Cindy Quote Link to comment Share on other sites More sharing options...
Ry Posted November 16, 2005 Share Posted November 16, 2005 If your doc is fired up-- then so am I. You are fortunate to have someone that is aggressive on your behalf. Have a great holiday and then put the gloves back on and start fighting. Good luck! Quote Link to comment Share on other sites More sharing options...
Patkid Posted November 16, 2005 Share Posted November 16, 2005 We thought about you with the storms rolling through your part of the country last night. Glad to read of your plan.............we love a pro active onc!! Love Pat and Brian Quote Link to comment Share on other sites More sharing options...
Kasey Posted November 16, 2005 Share Posted November 16, 2005 Di, May you continue to blaze new trails, reach for and attain new horizons!!!! May YOU be the one written up in the journals as the NEW protocol for SCLC!!!!! My very best wishes for success with this new approach. Will be waiting to hear how it progresses. You continue to amaze many with your spirit and fight. Best of luck, Di. I am certainly here rooting for success. Kasey Quote Link to comment Share on other sites More sharing options...
Don Wood Posted November 16, 2005 Share Posted November 16, 2005 Alriiight! Quote Link to comment Share on other sites More sharing options...
Kel M Posted November 16, 2005 Share Posted November 16, 2005 This is great stuff! I am so happy you have a fine advocate for a Doctor! Cheers, Kel Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 17, 2005 Author Share Posted November 17, 2005 Heard this morning that I've been accepted for this trial, assuming all goes well with the MUGA next week. Since I've had zero heart or BP problems, they said it's likely I'll sail through this test, unless I develop something in 5 days! I'm amazed, because I'm usually one patient too late, or whatever. I'm one of 30-50 patients in this trial which is available right now at only 9 hospitals in the country. Some of you may recall that when I was first diagnosed, the first Oncologist I saw got me all worked up about a trial, only to stick his head back in the door half an hour later to tell me the trial was "closed." Bummer. That was the same doc who told me I'd have 8-10 months to live. Joke's on him! He's also minus at least one patient since then - ME! Crossing my fingers and toes that the MUGA goes well, and I'll be ready next week to give thanks for MANY things, and then get started on this new regimen. Thanks to all of you for your kind comments and thoughts. They mean a WHOLE lot. Di Quote Link to comment Share on other sites More sharing options...
schmaydee Posted November 18, 2005 Share Posted November 18, 2005 check out the post i just replied to....just got my scan back after having my 1st round of (a clinical trial) chloretazine...its a 1/2hr IV once a week for 3 weeks, off a week, then ct scan. repeat... i've had 1 cycle and it has reduced the 4cm X 6cm mass on my adrenal gland by 80%.....i cant even tell i'm taking chemo.... ....s Quote Link to comment Share on other sites More sharing options...
Connie B Posted November 18, 2005 Share Posted November 18, 2005 Crossing my fingers and toes for you too Di! Ouch, just got a cramp in my toe! I HATE WHEN THAT HAPPENS!!!!! I think I'll stick to prayers. I really hope this all works for you. Your over do for a break here! ((((DI))))) Hang in there! Quote Link to comment Share on other sites More sharing options...
carolhg Posted November 18, 2005 Share Posted November 18, 2005 I am very optimistic about the trial helping you and so many other people also. Thank you. Prayers. Carol Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted November 18, 2005 Share Posted November 18, 2005 Good luck with this trial, Di. Hoping like Schmaydee, no side effects. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Elaine Posted November 18, 2005 Share Posted November 18, 2005 Hey girl! So sorry I have been MIA.. but not really cos I have never stopped thinking of so many of us oldtimers..lol. Your trial sounds exciting.. sounds weird to say,but you know what I mean... You are one tough one.. and cancer picked a formidable foe. Keep us posted... love and fortitude elaine Quote Link to comment Share on other sites More sharing options...
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