Invited to participate to CLINICAL TRIAL of # XL147 at Fox Chase in Philly!
Comments
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I, too, VERY much appreciate Connie's & Diane's updates!Ro10 said:Connie hope you continue to tell us about your IP/IV
We certainly do not think you are "grandiose and full of yourself". We very much appreciate you keeping us up to date with your treatments and your progress. It is all new to us, and we appreciate the information you share. We may need to choose one of these options in the future. Hope you have had a good week and will have another one next week. In peace and caring.
I'm with Ro. I like to be prepared as best I can for each new thing that comes my way. It's the 'surprises', those 'slaps upside the head' that catch us by surprise, that turn on the tears and leave you with that 'punched-in-the-gut' feeling. But if we are prepared, we can be pretty fearless most of the time. Anyone who is willing to share exactly what a treatment or procedure was like for them allows me to be emotionally prepared if I need to travel that same path. THIS DISCUSSION BOARD is the single best resource on the web for 'real time' information on uterine cancer, and the archived information we leave here will help the women that come after us that are desparate for some hope and some information.0 -
we need to hear everyone's stories: for us here now, as well aslindaprocopio said:I, too, VERY much appreciate Connie's & Diane's updates!
I'm with Ro. I like to be prepared as best I can for each new thing that comes my way. It's the 'surprises', those 'slaps upside the head' that catch us by surprise, that turn on the tears and leave you with that 'punched-in-the-gut' feeling. But if we are prepared, we can be pretty fearless most of the time. Anyone who is willing to share exactly what a treatment or procedure was like for them allows me to be emotionally prepared if I need to travel that same path. THIS DISCUSSION BOARD is the single best resource on the web for 'real time' information on uterine cancer, and the archived information we leave here will help the women that come after us that are desparate for some hope and some information.
for those who come after needing hope and information. i think that's what we all need--hope and inspiration, and i agree, this discussion board is our best resource. i'm so glad a friend of mine found this site for me. i can't imagine going through any of this without the rest of you here, and the guidance and resources and experience you provide, as well as the invaluable information. it's like having 100 second opinions. and, the relationships we form here with each other are equally invaluable; no one knows better than we do what's it's like to be going through the diagnosis, surgery, follow up treatments, blood tests, scans, ad infinitum--the women here are a blessing to all of us. i once said that nothing, absolutely nothing good has come out of having cancer, but i do need to amend that. the one true and good thing that has come out of my diagnosis, is the women who i've come to know and care deeply for here, and who care for me, and who sustain me throughout.
sisterhood always,
maggie0 -
This comment has been removed by the Moderatorlindaprocopio said:I, too, VERY much appreciate Connie's & Diane's updates!
I'm with Ro. I like to be prepared as best I can for each new thing that comes my way. It's the 'surprises', those 'slaps upside the head' that catch us by surprise, that turn on the tears and leave you with that 'punched-in-the-gut' feeling. But if we are prepared, we can be pretty fearless most of the time. Anyone who is willing to share exactly what a treatment or procedure was like for them allows me to be emotionally prepared if I need to travel that same path. THIS DISCUSSION BOARD is the single best resource on the web for 'real time' information on uterine cancer, and the archived information we leave here will help the women that come after us that are desparate for some hope and some information.0 -
Met with my radiation oncologist locally today.unknown said:This comment has been removed by the Moderator
My radiation oncologist, who did my pelvic radiation & brachys back in May & June of 2009, has always been the most blunt of all on my oncologists, someone who never skirts my questions even when, once I get the answers, I almost wish he had. I had an appointment with him today, as targeted radiation is one of my back-up plans to the Fox Chase Clinical Trial. Some of what I learned is depressing, but still good to know.
He told me that once you have cancer progression on any chemo drug, there's never any use going back to it. He told me that if 1st line chemo is statistically effective at reducing a type of cancer 90% of the time, some version of that chemo cocktail will be tried 1st after you have a recurrence unless the oncologist feels that chemo line didn't really do the job. That is because 2md line chemo has only about a 45% chance of reducing the cancer to NED. And with each subsequent new line of chemo being tried, one after the next, the sdtatistical ability of the 3rd and 4th and 5th line goes down and down. That was depressing, but good to know. After all, that's just "statistically"; it doesn't mean you (or I!) won't fall into the lucky percentage that each subsequent chemo line works for, no matter how thin that slice of the pie is!
He said that we can always pretty quickly initiate targeted radiation any time if the 2nd line chemo doesn't work for me at reducing my cancer (be it Doxil or the Clinical Trial) and that he'd probably want to jump in at that point (after 2nd line chemo) before I moved on to Gemzar or something else, but that we could cross that bridge when we get there. I asked about going back to Carboplatin and he didn't personally seem that keen on 'platin' chemos for me, since I recurred less than a year between my last carbo/platin round and my recurrence, and carboplatin a 2nd time will be very hard on my bone marrow, perhaps too hard. He said we could probably radiate more than once if we needed to, that radiation is not a once-and-done thing, is statistically more reliable at reducing tumor size than chemo, and can be used to control the cancer growth as it reappears in other areas, if it does.
He could actually feel the node under my arm and he thumped it a couple times with his finger, a thump that I could feel (and the node hurts a little now that he played around with it.) He couldn't feel anything in my pelvis. He said my lymph nodes are still very small and felt we had time before I would have any symptoms from them, but to call him anytime I did have any physical symptoms and wanted to get radiation in my treatment schedule.
He enouraged me to keeping aggressively bugging Fox Chase about the Clinical Trial, and I will. I phoned twice today & left messages giving them the date of my last CT/PET and the urgency to get me enrolled before the 30-day window passes. (They need a CT/PET done within 30 days prior to starting the Trial as a baseline.) My radiation-onc said my insurance will never pay for another CT-PET this soon after my Aug 19th CT/PET, so getting into the Trial before the 19th is a must. I am leaving it up to fate. If I can get in, then it was meant to be. If not, then it wasn't. I'm hoping they're just trying to line up a full day of appointments for me later this week so that I can get everything done that they need to start the Clinical Trial all on one trip down there. I wish they'd CALL! I feel like a teenager waiting for some new boyfriend to call me, afraid to use my phone for fear that's when they'll call. ARGH!0 -
Triallindaprocopio said:Met with my radiation oncologist locally today.
My radiation oncologist, who did my pelvic radiation & brachys back in May & June of 2009, has always been the most blunt of all on my oncologists, someone who never skirts my questions even when, once I get the answers, I almost wish he had. I had an appointment with him today, as targeted radiation is one of my back-up plans to the Fox Chase Clinical Trial. Some of what I learned is depressing, but still good to know.
He told me that once you have cancer progression on any chemo drug, there's never any use going back to it. He told me that if 1st line chemo is statistically effective at reducing a type of cancer 90% of the time, some version of that chemo cocktail will be tried 1st after you have a recurrence unless the oncologist feels that chemo line didn't really do the job. That is because 2md line chemo has only about a 45% chance of reducing the cancer to NED. And with each subsequent new line of chemo being tried, one after the next, the sdtatistical ability of the 3rd and 4th and 5th line goes down and down. That was depressing, but good to know. After all, that's just "statistically"; it doesn't mean you (or I!) won't fall into the lucky percentage that each subsequent chemo line works for, no matter how thin that slice of the pie is!
He said that we can always pretty quickly initiate targeted radiation any time if the 2nd line chemo doesn't work for me at reducing my cancer (be it Doxil or the Clinical Trial) and that he'd probably want to jump in at that point (after 2nd line chemo) before I moved on to Gemzar or something else, but that we could cross that bridge when we get there. I asked about going back to Carboplatin and he didn't personally seem that keen on 'platin' chemos for me, since I recurred less than a year between my last carbo/platin round and my recurrence, and carboplatin a 2nd time will be very hard on my bone marrow, perhaps too hard. He said we could probably radiate more than once if we needed to, that radiation is not a once-and-done thing, is statistically more reliable at reducing tumor size than chemo, and can be used to control the cancer growth as it reappears in other areas, if it does.
He could actually feel the node under my arm and he thumped it a couple times with his finger, a thump that I could feel (and the node hurts a little now that he played around with it.) He couldn't feel anything in my pelvis. He said my lymph nodes are still very small and felt we had time before I would have any symptoms from them, but to call him anytime I did have any physical symptoms and wanted to get radiation in my treatment schedule.
He enouraged me to keeping aggressively bugging Fox Chase about the Clinical Trial, and I will. I phoned twice today & left messages giving them the date of my last CT/PET and the urgency to get me enrolled before the 30-day window passes. (They need a CT/PET done within 30 days prior to starting the Trial as a baseline.) My radiation-onc said my insurance will never pay for another CT-PET this soon after my Aug 19th CT/PET, so getting into the Trial before the 19th is a must. I am leaving it up to fate. If I can get in, then it was meant to be. If not, then it wasn't. I'm hoping they're just trying to line up a full day of appointments for me later this week so that I can get everything done that they need to start the Clinical Trial all on one trip down there. I wish they'd CALL! I feel like a teenager waiting for some new boyfriend to call me, afraid to use my phone for fear that's when they'll call. ARGH!
Linda...it's all been said but I still need to put in my '2 penneth' and I go for the old adage 'nothing venture nothing gain'. Go for it, it sounds very positive and I think that it is well worth it. Celia0 -
Looks like I'm OUT of the Clinical Trial after all.cleo said:Trial
Linda...it's all been said but I still need to put in my '2 penneth' and I go for the old adage 'nothing venture nothing gain'. Go for it, it sounds very positive and I think that it is well worth it. Celia
I got my call from Fox Chase and it looks like I'm OUT of the trial! I am disappointed, but I'm trying to be fatalistic about this. If I was able to participate in the Clinical Trial, I felt it was meant to be. Now that I can't, I am trying to feel the same way. I'm still bummed because I wanted to be a part of something brand-new and cutting edge.
Here's what happened:
It turns out that Fox Chase called my insurance to pre-certify all medical contingencies during my participation, and my insurance flat out said I would not be covered during the time I was participating in the Clinical Trial. They wouldn't cover my $22,000 "every-2-months" CT/PET scans or cover any medications or hospitalizations for problems I may run into taking this untested drug. So, although the DRUG is "free" to those on the trial, I would be on my own for any complications from it. I just can't take that chance or the chance that the insurance will blame the Trial for other problems I have down the road and refuse to cover them. My insurance paid out $330,000 last year for my treatment; I can't take a chance of NOT being covered.
I'm glad I got the MUGA scan last week so that I can get right into Doxil chemo (locally) hopefully by early next week. & I'm glad that I met with my radiation oncologist and know that radiation will be my next option if the Doxil doesn't work. So at least I have a treatment PLAN in place, and that gives me some comfort. 0 -
ok, on to plan b....lindaprocopio said:Looks like I'm OUT of the Clinical Trial after all.
I got my call from Fox Chase and it looks like I'm OUT of the trial! I am disappointed, but I'm trying to be fatalistic about this. If I was able to participate in the Clinical Trial, I felt it was meant to be. Now that I can't, I am trying to feel the same way. I'm still bummed because I wanted to be a part of something brand-new and cutting edge.
Here's what happened:
It turns out that Fox Chase called my insurance to pre-certify all medical contingencies during my participation, and my insurance flat out said I would not be covered during the time I was participating in the Clinical Trial. They wouldn't cover my $22,000 "every-2-months" CT/PET scans or cover any medications or hospitalizations for problems I may run into taking this untested drug. So, although the DRUG is "free" to those on the trial, I would be on my own for any complications from it. I just can't take that chance or the chance that the insurance will blame the Trial for other problems I have down the road and refuse to cover them. My insurance paid out $330,000 last year for my treatment; I can't take a chance of NOT being covered.
I'm glad I got the MUGA scan last week so that I can get right into Doxil chemo (locally) hopefully by early next week. & I'm glad that I met with my radiation oncologist and know that radiation will be my next option if the Doxil doesn't work. So at least I have a treatment PLAN in place, and that gives me some comfort.
linda,
i am really sorry that the trial didn't work out, linda, especially for the reason it didn't--lack of insurance coverage. i know our treatments cost our insurance companies lots of money, but that is why they're there, and it's not like we haven't put in hundreds of thousands of dollars over the years..... and, then, maybe it just wasn't meant to be. still, i know how disappointed you must be.
it is good, however, that you made all these back up plans, got scans, met with doctors, etc., so you can start treatment as soon as possible. i know how important that is. so, i'm hoping that treatment starts right away, and that doxil works its magic on you. maybe that is what is truly meant to be!
in the meantime, i hope you really are taking some comfort in the fact that you do have options, you've got things lined up, and that you'll be in treatment soon. and, of course, don't forget about us; we're all here for and with you--in your disappointments as well as your triumphs.
hugs,
maggie0 -
This comment has been removed by the Moderatorlindaprocopio said:All 3 local Oncs say "go for it", now it's about TIMING
It's been a month now since my last chemo, even though I have active cancer and should be in treatment, so the TIME it takes to get me enrolled and actually receiving the drug is now the biggest roadblock to my participation in this Clinical Trial. Only my Gyne-Onc was bold enough to actually email and say "Do it!" right out, but my chemo-onc and radiation onc both emailed their approval in more vague terms (probably some concerns about lawsuits in how carefully they worded their go-aheads. ha!) But I've done my research and have decided I want to do this clinical trial IF (the big "IF") they can get me enrolled and in treatment again within the next 10 days or so. I am really afraid to have lost so much time on my 'next treatment' decision already, although Dr. Morgan and my local oncs both tell me that I should be okay and that I can invest this time to make an informed decision.
The famous Dr. Morgan from Fox Chase surprised me by calling me AGAIN last evening to talk about the clinical trial. He is having the head researcher call me Monday to set up an appointment down there in Philly for my "Informed Consent" paperwork. They already have all my path reports and tissue slides, but will need my actual tissue BLOCK from my original surgery. A baseline CT/PET is required prior to entering the Trial, and there will be a rush to get me in so that the one I had on 8/19 will meet that requirement (a 30-day window, Dr. Morgan guessed but was unsure). They only allow 88 participants in this Trial worldwide (USA, Belgium, & France I think) but the inclusion parameters are so narrow with so many exclusions that an eligible participant, at exactly the right point in their treatments, must be a 'find', and statistically only 5% of cancer patients ever participate in a Clinical Trial for a lot of personal reasons. So I know they really want me. But if they can't get me quickly with that XK-147 pill in my mouth, I will be too anxious to wait. (I missed out on Da Vinci surgery way way back when my cancer was diagnosed because I was unwilling to lose an extra month before my surgery by switching hospitals and all the extra testing, etc. that usually triggers.) I like ACTION for my cancer battle and am anxious without it, I guess, when I am not in remission.
Do you all want the step-by-step on the Clinical Trial posted? I don't want to bore you with this "all about me" tirade, but if you think it would be interesting and helpful for those that come after me who might consider a Trial, I'd be happy to share the process. If nothing else, I know I'll need your input as this rolls along.0 -
Follow the GuidePostsmaggie_wilson said:ok, on to plan b....
linda,
i am really sorry that the trial didn't work out, linda, especially for the reason it didn't--lack of insurance coverage. i know our treatments cost our insurance companies lots of money, but that is why they're there, and it's not like we haven't put in hundreds of thousands of dollars over the years..... and, then, maybe it just wasn't meant to be. still, i know how disappointed you must be.
it is good, however, that you made all these back up plans, got scans, met with doctors, etc., so you can start treatment as soon as possible. i know how important that is. so, i'm hoping that treatment starts right away, and that doxil works its magic on you. maybe that is what is truly meant to be!
in the meantime, i hope you really are taking some comfort in the fact that you do have options, you've got things lined up, and that you'll be in treatment soon. and, of course, don't forget about us; we're all here for and with you--in your disappointments as well as your triumphs.
hugs,
maggie
I believe in following the guideposts and so it wasn't meant to be. I can't believe the insurance really controls our research. Something with all of this insurance has to change. We need more research for our cancer but can't get in because of insurance. I understand your decision completely. We need you on Good Morning America explaining this to the world.
Would the drug company researching the drug be willing to pay these expenses? Doesn't hurt to call Fox Chase and ask.
Diane0 -
In 2014, insurance companies will be FORCED to cover trials.Songflower said:Follow the GuidePosts
I believe in following the guideposts and so it wasn't meant to be. I can't believe the insurance really controls our research. Something with all of this insurance has to change. We need more research for our cancer but can't get in because of insurance. I understand your decision completely. We need you on Good Morning America explaining this to the world.
Would the drug company researching the drug be willing to pay these expenses? Doesn't hurt to call Fox Chase and ask.
Diane
So much of the meatier more relevant parts of national healthcare reform will come too late for me. Insurance companies will be forced to cover the associated medical care of clinicla trials after 2014. I will make some calls today, but I don't have much hope of this turning around fast enough to matter to me. I need to get back in treatment ASAP and expect to be getting Doxil by next week. It was a cool thought, and I was all psyched up to do the Trial, so was very disappointed. But after I make a few calls this morning, I'm moving on to Plan B. Thanks, everyone!0 -
I'm Sorry to Hear This, Lindalindaprocopio said:In 2014, insurance companies will be FORCED to cover trials.
So much of the meatier more relevant parts of national healthcare reform will come too late for me. Insurance companies will be forced to cover the associated medical care of clinicla trials after 2014. I will make some calls today, but I don't have much hope of this turning around fast enough to matter to me. I need to get back in treatment ASAP and expect to be getting Doxil by next week. It was a cool thought, and I was all psyched up to do the Trial, so was very disappointed. But after I make a few calls this morning, I'm moving on to Plan B. Thanks, everyone!
I'm sorry to hear that your insurance company will not cover the costs associated with your participation in the clinical trial at Fox Chase, Linda. But I'm happy that you were proactive and already have Plan B in place.
In case you or anyone else is interested, here is a link to a state-by-state map showing states that currently require health plans to cover patient care costs for clinical trials.
http://www.cancer.gov/clinicaltrials/education/laws
Unfortunately, it appears that Pennsylvania is not one of the states currently required to cover these costs.
All the best,
MoeKay0 -
Health Care Reformlindaprocopio said:In 2014, insurance companies will be FORCED to cover trials.
So much of the meatier more relevant parts of national healthcare reform will come too late for me. Insurance companies will be forced to cover the associated medical care of clinicla trials after 2014. I will make some calls today, but I don't have much hope of this turning around fast enough to matter to me. I need to get back in treatment ASAP and expect to be getting Doxil by next week. It was a cool thought, and I was all psyched up to do the Trial, so was very disappointed. But after I make a few calls this morning, I'm moving on to Plan B. Thanks, everyone!
Just what does one say to people that are angry about health care reform? Gee - I know this woman that might really benefit from this cancer trail, but her insurance won't pay for anything if she does.........so - she misses out.0 -
So Sorrylindaprocopio said:Looks like I'm OUT of the Clinical Trial after all.
I got my call from Fox Chase and it looks like I'm OUT of the trial! I am disappointed, but I'm trying to be fatalistic about this. If I was able to participate in the Clinical Trial, I felt it was meant to be. Now that I can't, I am trying to feel the same way. I'm still bummed because I wanted to be a part of something brand-new and cutting edge.
Here's what happened:
It turns out that Fox Chase called my insurance to pre-certify all medical contingencies during my participation, and my insurance flat out said I would not be covered during the time I was participating in the Clinical Trial. They wouldn't cover my $22,000 "every-2-months" CT/PET scans or cover any medications or hospitalizations for problems I may run into taking this untested drug. So, although the DRUG is "free" to those on the trial, I would be on my own for any complications from it. I just can't take that chance or the chance that the insurance will blame the Trial for other problems I have down the road and refuse to cover them. My insurance paid out $330,000 last year for my treatment; I can't take a chance of NOT being covered.
I'm glad I got the MUGA scan last week so that I can get right into Doxil chemo (locally) hopefully by early next week. & I'm glad that I met with my radiation oncologist and know that radiation will be my next option if the Doxil doesn't work. So at least I have a treatment PLAN in place, and that gives me some comfort.
Sorry that you are not able to participate in the clinical trial but you did you homework and had Plan B ready to roll. Know you are anxious to jump back into treatment and it looks that is going to work for you.
The fear of having something that "MIGHT" be related by the trial, and then denied by insurance is a huge risk, and I certainly understand your concern!
Wishing you well on this next leg of your journey! You will overcome!!
Karen0 -
Linda sorry the clinical trial is no longer an optionkkstef said:So Sorry
Sorry that you are not able to participate in the clinical trial but you did you homework and had Plan B ready to roll. Know you are anxious to jump back into treatment and it looks that is going to work for you.
The fear of having something that "MIGHT" be related by the trial, and then denied by insurance is a huge risk, and I certainly understand your concern!
Wishing you well on this next leg of your journey! You will overcome!!
Karen
I am sure you are disappointed. I am so glad you have Plan B in place, as well as Plan C. Hope you can get on the Doxil soon, and you tolerate it well. You certainly can not afford to not have your insurance pay for what you may need.
Again I appreciate all the information you share with us about what your radiation onocologist says and other onocologists say. Like Maggie said in one of her posts ..... it is like us getting "may other opinions" for us to consider when the time comes.
I am going to be gone for several weeks, but you (as well as all my other sisters) will remain in my prayers. In peace and caring.0
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