SDianneB
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Posts posted by SDianneB
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Truly, Fay, they are supposed to have left and right markers on x-rays, but seems that even I could tell the difference since your heart is in your chest, and we know where that belongs. Sheesh.
The image of your olive is just too much. You must post a picture!!
You hang in there now, ya hear? You're one of the new blessings in my life that I'm thankful for this year, and I want life to be better and better for you.
Di
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Who else but Lucie to pave the way for so many of us? What a gal!
Lucie & Don, I'm thankful for having come to "know" the two of you to the extent that can happen in such a forum. Happy, happy Thanksgiving to the both of you and your family.
Di
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I started having stomach aches -- at least that's what they felt like -- last spring. After several visits to several docs, the Oncologist finally ordered an ultrasound of my gallbladder. I had a gallstone and a stopped up bile duct! One ERCP procedure to smash the stone and put in a stent to keep the duct open and I was all better. Had to have the stent replaced later with a permanent one.
The offshoot was that I had some very small liver mets, and one on my pancreas that they may not have found so soon had I not had all that done. It enabled us to get to work on the mets, and now most are gone, with only a few that are much smaller, and the pancreatic met that we're hitting with a new drug soon.
Mine showed up in lab work -- I had them run a complete chemistry that includes liver tests. They were way out of whack. Now, those are checked at least once a month when I have my other lab work done.
It may be nothing, but OTOH, it may be something that will benefit from being found so early.
Di
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I'm in for a day of it -- have to report at 8:00 a.m., and an Interventional Radiologist will insert the port with CT guidance, then they will do the MUGA test right after the port is done.
It was an Interventional Radiologist who did my CT guided liver biopsy, and he was great. I'm hoping to get the same doc, but he was retiring this year, so may not be there now. Oh well.
It's nice having people to ask about things before you have them. It gives you an idea about what to expect.
Glad your procedure went well and that it's all over for you! My challenge will be keeping the cat from walking all over me after mine is put in!
Di
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Having changed Oncologists myself, I can relate to you. So glad you found a good one. I felt fortunate to find one I really relate to, so I know how that feels.
My best to you.
Di
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Now see there -- if Lucie can do it, WE can do this too!
I'm a fairly tough ol' buzzard, so I doubt I'll have a problem with it. The first time you have anything done that you're not familiar with, it's scary, for sure. I usually have it all built up in my mind as being SO bad before I get there, so by the time I have it done, it turns out to be nothing!
Oh well. I'm actually looking forward to getting through next week so I can get started in this trial after Thanksgiving. The timing is perfect -- so much to be thankful for this year, and having Thanksgiving fall right at this time is great.
Di
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It's amazing being in and around Nashville, and not automatically heading for Vanderbilt. If you look at many of the trials and studies, they are going on at the Sarah Cannon Cancer Center. They work in tandem with Vanderbilt researchers a lot, but it seems that they have a wider variety of trials available. Or, maybe not. I haven't fished around at Vanderbilt as much.
I do know that I've met several people in the research area where I go to get chemo who have been to places like M. D. Anderson and Vanderbilt, and were told "we can't help you," then they come to the Sarah Cannon Center, and find some help. One man has a rare cancer - multicystic something or another, and started with over 30 tumors in his chest and lymph glands, and has whacked that in half, plus some, while still being able to work. He says he's fortunate that he kept on looking and found this place.
It's a good place, IMO -- named after the late Minnie Pearl for anyone not familiar with the name Sarah Cannon. She funded and started the center for primarily breast cancer, but since then, it's branched out and has become an excellent cancer treatment center and research facility.
(I'd best stop, or will have to pay for ad space - ha!)
Di
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Awwww, I was just joshin'! I guess if I can survive having a foot long (well, it looked like it anyway!) needle poked into my belly for a liver biopsy, this port won't be anything in comparison! LOL!!
Di
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I'm getting one Monday. They tell me there's not much to it, and people who have or have had one say about the same. I've made it a LONG time without one, because almost all of my chemo has been oral, but with the new drug I'll be taking (entering a trial next week) I'll have to give in and have a port!
You let me know how yours goes tomorrow, so I'll have time to run away before my appointment Monday, ok?
Di
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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
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I had those drugs to begin with, and suffered no real side effects. I had minor fatigue at first, and it got a little worse when they started chest radiation after 2 cycles. I got a pre-med infusion of Decadron and an anti-nausea drug, and never had any nausea. I managed to keep my hair too, until I had the preventive brain radiation (PCI)!
Everyone is so different, it's difficult to compare all this, but it helps to know what others have gone through, doesn't it. Here's hoping you do very well with this drug combo. It's a good one, I think.
Di
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Well gosh, Pat. I don't know what to say. I have no clue what it is or might be, there are so many possibilities with this bleepin' disease. I just hope you can take out some time for yourself to rest and think. I believe it will not just help you to cope, but will improve the time you spend with Brian.
The two of you are most fortunate and blessed to have each other. If they start caring so much how you act in church when you're a cancer patient, well then, might as well just start going to Kroger on Sundays, huh?
This is extremely difficult for you both, I know. Many prayers and hugs your way.
Di
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Awww shucks -- I was all ready to read that George Clooney had stopped by for a visit!
KIDDING!
Glad the 2 of you got to meet and talk, if only briefly. Didja count the hugs? Ha.
Di
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Elaine -- how I've missed you around here! I am so relieved to hear that you and your daughter wound up with good news, and that you let us know what's been going on.
Take care, and keep the negative test results and good news coming!
Di
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Cindy - that's wonderful! Every day you survive gives you better and better chances of surviving for many more. You GO girl!
That is such great news!
Di
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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
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I just got around to looking at that letter - it is fantastic! I've been writing to two local morning show (TV) anchors who seemed to be interested, until October came and went, and now they won't even respond. I may sit and try to put together something like what you wrote and see if they will at least respond to it.
You did a super job. Thanks.
Di
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Charlie, that's wonderful!! Have a box of Krispy Kreme donut holes on me!
Di
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It's a good thing! My granny would have just propped you up and hosed you down.
It is SO good to see your name here today!
Di
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Wow -- came in here to see if there was any news about you and there was -- YOU!! YAY!!
Hoping and praying for you still, as always.
Di
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Amen to that, Fay. When I was driving downtown earlier, I was grumbling about the traffic, and realized it was because of the Veteran's Day parade. I'd sit still in my car all afternoon for those folks, and couldn't even begin to pay them back for all they've done, are doing, and will be doing for me.
Di
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Thanks so much for the update. Addie -- we're all praying and pulling for you, sweetie. Hang in there.
Di
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A speech teacher I had in high school. She taught me extemporaneous speaking, called "informative speaking" at the time. I actually won a state contest with her guidance! She was really wonderful though -- she'd get SO excited when her students did well, and supported us to the hilt. Sadly, she was fired, because she refused to pass football players out of her English classes so that they could graduate and play college ball.
I didn't know it at the time, but my piano teacher when I was little gave me many life lessons in the years I went to her house once a week for lessons. She and her husband were retired teachers. She was so very prim and proper -- wore a little lace kerchief tucked daintily into her watchband.
Two amazing women. I'll never forget either of them.
Di
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Way to go, Jamie! I can't get them much interested here in Nashville. Last month, they acted like they'd do some special stories, and now they have moved onto other things and won't even respond to me. Oh well.
I think the thing to do is to get a big group together and go picket in front of a few hospitals!
Di
Scans
in SCLC GROUP
Posted
I have chest/abdomen/pelvis CT scans with contrast after every 2 or so rounds of chemo just to check progress. We look for shrinkage or stable. If anything appears to be new or growing, the Oncologist rethinks the drug regimen, and makes a change - just like what we're doing now going from the oral Topotecan to this drug trial.
I think you'll find a variety of timelines that people have scans, and what kinds of scans we all have, and when.
Di