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Invited to participate to CLINICAL TRIAL of # XL147 at Fox Chase in Philly!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I received a call today from Dr. Mark Morgan at Fox Chase Cancer Center in Philadelphia offering me the opportunity to participate in a clinical trial: ( http://clinicaltrials.gov/ct2/show/NCT01013324 ). The trial is in PHASE 2 and is for recurrent endometrial cancer, for drug # XL147. Dr. Morgan said that if I am ever going to try something "cutting edge" & do a clinical trial, it should be now while I still feel pretty healthy and am having no real physical symptoms. Apparently XL147 is a pill that blocks P-110 pathways (???) and has minimal side effects (sometimes a rash & diahrea). I would have to go down to Fox Chase every 2 weeks for labs (about 2 1/2 hours each way). I'm to call within a week if I want to enroll.

Meanwhile I am having a MUGGA scan tomorrow afternoon in preparation for possibly starting to take Doxil. & Monday I have an appointment scheduled with my radiation oncologist to talk about the recommended radiation of those 2 malignant nodes suggested by Fox Chase when I was down there for a 2nd opinion. If I do this Clinical Trial, I have to put off radiation and Doxil until later. I'm tempted to do the trial, but welcome feedback here from any of you. I'm thinking that there are only so many chemos for endomatrial cancer and once you've taken them all until each is no longer effective, what then? So this gives me a shot at a NEW drug that I wouldn't be able to get otherwise. & it just could be "the one". & if it doesn't work after a couple of months, I can always drop out and get back into conventional treatment.

Anyone see a down side I'm missing?

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

I did a clinical trial with my breast cancer 11 years ago. I would research the drug some more. They will follow you closely; if it doesn't seem to be working you can easily switch back to chemo.

Would you be getting the drug or a placebo? I think this would be the most important question to ask yourself. Does it matter what type of endometrial cancer? I am trying to think of questions to ask to help you make up your mind. Of course, this is coming from the gal who just had HIPEC and will go into chemo again for final phase. All data is gathered for research.

I just read a very interesting article in current Newsweek; they believe multiple drug therapy is better than single chemo agents. This was first discovered on pediatric patients that are treated agressively. Very good reading; I often believed that those of us that are not a 1a need more agressive treatment for a longer period. It only makes sense. I also think we need intraperitoneal chemo and intraveinous. I'm learning alot; sometimes I wonder if the oncologists are really thinking about this and seeing the logic. With pediatric patients chemo is sometimes given for two years. They have attained high cure rates.

We're with you through your decision.

Diane

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maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

linda,

i'm so glad you are being given the opportunity to decide whether you want to do this trial or not. i have only one question: does everyone in the trial get this same drug, or do half the participants get the drug they are testing, and the other half get a placebo, and neither half knows which it's getting?? that's my only concern. if that happens to be the case, i don't think, if it were me, i'd do it.

if, however, you know you'll get the drug that's being tested, it does sound like it's worth doing; and as you say, if it doesn't work for you, you can always drop out and go back to conventional treatment. it's a big decision, but it's great to have options....

so, whatever you decide, dear linda, we're100% behind you.

hugs and sisterhood,
maggie

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

I did look into a clinical trial when first diagnosed. The individuals are randomly assigned so you have no idea if you are on the new drug or getting a placebo. When I read about the potential side effects of the drug and my personal health history, I decided NOT to participate. My oncologist concurred.

So make sure you understand all of the lengthy verbiage!

Not an easy decision and I know you will make the best decision for YOU!

Best wishes...Karen

lociee's picture
lociee
Posts: 102
Joined: Apr 2009

Hi Linda - something that I found interesting - you may, too, is an article in the August 2, 2010 New Yorker - Annals of Medicine - what I found most interesting was the info on Stephen J. Gould (who lived around the corner from me in Cambridge for years - before he moved to new york), he talks about the fighting "until the skein runs out" - I love that image! - and "those who rage mightily against the dying of the light." Overall the article was sad - but at the same time reaffirming and uplifting. I recommend you read it - they talk a lot about trials and the TIME - trials give - or do not give.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

This is a single arm trial which means all participants (88 expected) get the XL147; there is no control group getting a placebo. This clinical trial is to show the "Efficacy as defined by overall response rate and progression-free survival (PFS) at 6 months", and "Duration of response and PFS". Apparently this drug is being tested on a variety of different cancers that are known to have mutations/amplification in the PIK3CA gene (like endometrail cancer), each type of cancer in a different clinical trial.

I think I'll call the phone number Fox Chase provided to talk to the person that insures "informed consent" of all participants, once I hear back from my own local oncology team on how they feel about me doing this. It sounds exciting to be a part of, but I don't want to be foolish or do it for the wrong reasons (like... no expected nausea, fatigue, or baldness,.... which all sound PRETTY TEMPTING!) I want to make a decision soon and get back in treatment of some kind within the next 10 days if possible. I've been out of chemo for a full month now getting that CT/PET, meeting with my 2 local oncologists, & then getting that 2nd opinion at Fox Chase. A month is a long time to be out of treatment when you have confirmed active cancer, and I don't want to hem and haw over this for weeks. I'm moving forward on ALL my options (MUGGA scan tomorrow in case I do the Doxil chemo; plus apppointment with radiation oncologist on Monday in case I do targeted radiation of those 2 cancerous nodes; plus emails sent out to my 3 oncologists for feedback on this clinical trail in case I do THAT!)

Maybe this clinical trial is the BOLD MOVE I was looking for, a chance to change the course of my prognosis, a chance to be a part of a new way of treating recurrent uterine cancer. Or maybe not! HA!

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

linda,

the more i thought about it, the more i thought that they would not have a control group with cancers that are recurrent; would be too risky. so very glad to hear everyone gets the same drug, no worries there. i think that it's smart to keep all your options open until you make a decision, and certainly you'd want to hear what your 3 oncologists have to say re: this trial. i bet they're in favor of it. i agree, this possibility does sound very exciting. if you're able to remember your dreams, it could be a really instructive time to learn what your unconscious is thinking, so if you can, write your dreams down and listen to what they're saying. often our unconscious knows better what we want or need than our conscious thought. in any case, i'm hoping you soon have the information (from all possible sources) you need to make the best choice possible for yourself because i know how anxious you are to get started. and, linda, i honestly do not think you're going to make a decision based on the promise of no nausuea, fatique or baldness--just because this drug has some additional good things going for it, doesn't mean it's not still the best choice. and, there's no question this clinical trial is a bold move!

so, hang in there, girlfriend, and know we're solidly behind you.

hugs and sisterhood,
maggie

thank you
Posts: 77
Joined: Jun 2009

I think this is the most important - at least for me. We all hear that after the recurrence there is not much for cure. We hear statistics that we try to fight. And the already approved treatments are not so many. And all the approved drugs wills still be there if for some reason you couldn't continue the study.
BUT isn't it what you needed? To try something new? to be hopefull that this might bring CURE?
My experience with studies as a physician: I never ask a patient who has a good insurance and never tried the FDA approved meds to participate in the studies I am conducting. But I see many people with bad or no insurance at all. These patients, or patients that have tried everything approved but still don't do well participate in my studies. And I am very happy with how closely the patients are monitored. And all this for free - which is important for many patients.
I would go for it. Before you sing the consent they can give you information about the phase I results. You can ask about side effects, percentages and how frequently you will be monitored, and how - this is very important because you want to withdraw early if it doesn't work for you and go to Doxil. We all know that at the end of the first visit you will know more than many oncologists about this study.
New options and many alternatives are needed, and HOPE is certainly needed.

Chrysoula

kansasgal's picture
kansasgal
Posts: 125
Joined: Aug 2009

Following my hysterectomy in late April 2009 and subsequent Dx of stage 1A UPSC in late May 2009, I traveled 2 ½ hours one-way to another state for a second-opinion consultation with Dr. D. Scott McMeekin at the Oklahoma University Cancer Institute. I was trying to make a decision on adjuvant therapy and had been referred to Dr. McMeekin by an oncologist at the Mayo Clinic. I arranged for the blocks with my slides to be sent to Dr. McMeekin before my visit. At my visit he recommended that I seriously consider adding vaginal brachytherapy to the 6 rounds of carbo/taxol recommended by my local gyn/onc. He also told me about a clinical trial he was conducting for which he felt I would qualify. He urged me to read more about it (he gave me a packet of info) and to let him know right away if I wished to be considered since treatment would need to commence immediately.

(Pelvic Radiation Therapy or Vaginal Implant Radiation Therapy, Paclitaxel, and Carboplatin in Treating Patients With High-Risk Stage I or Stage II Endometrial Cancer – still recruiting participants – GOG-0249 – NCT00807768)

Like Karen, I carefully considered taking part in a clinical trial but felt that my medical history (which includes a lengthy history of severe diverticular disease) made pelvic radiation of too great a risk for me to take the chance of being randomly assigned to that arm of the clinical trial – especially with my cancer caught at such an early stage. I decided to hold the pelvic radiation option in reserve in the event that a pelvic recurrence might warrant the 25-30 rounds of pelvic radiation at the risk of perforating my already fragile intestines. I did, however, request of my local gyn/onc that vaginal vault brachytherapy be added to my treatment, and he facilitated with a referral to the rad/onc. I also was strongly encouraged by several other oncologist friends to have chemotherapy as my primary adjuvant therapy rather than taking a chance on radiation alone as adjuvant therapy.

Your situation looks different to me. Of course no one has a crystal ball, but the members of your current local oncology team seems very interested in YOU (not just your case), so I would definitely seek their opinion as you are making up your mind how to proceed. And to me the single arm aspect makes the decision process much less murky.

I really wished I could have taken part in a clinical trial as part of my initial adjuvant therapy since I feel they are so vital to selecting the best protocols for future patients.

Hugs from Sally

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

Dear Linda,

I have been reading "Curing Cancer" in NEWSWEEK Sept 13, 2010. They are discussing new oral drugs that will change the face of treating cancer. they work on "driver mutations." It is so exciting.

Some oncologists complain that our group doesn't try enough clinical research. I think you should read this article. It's probably the direction they're going to. I know when I relapsed with cancer in the peritoneum I called MD Andersen and she had wanted me to do some oral drug but it was closed. Look at what Gleevec has done for leukemia.

Sometimes we do clinical trials to get the cutting edge medication. I first did it for my daughters. Then I felt like I did it for all my sisters with breast cancer. I am not that altruistic but you at least feel that you did something to help. I don't regret it one minute. I don't think they would endanger you. My experience is they give what they really believe works.

Please read the article in Newsweek. The oral drugs are sounding more on the right track from the article.

I don't want to push you. I'd take it but I am already in the HIPEC thing and wouldn't qualify. Sometimes you have to take a chance on life.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

I really didn't mean one group would receive a placebo, but rather there would be two groups and each participaant assigned to one of the 2 treatmenst protocol and compared. The one "arm" of the protocol for the trial I was considering I felt was too risky for me and since there is a 50-50 chance of being put in that group, it was too big a risk for me.

I agree a single arm is different. I know you will gather all of the info you can, and evaluate your options and make the choice that you feel is best for YOU!

Best wishes! Karen

MoeKay
Posts: 306
Joined: Feb 2004

Here are some questions that came to mind. Will you have to wait for 6 months for a scan to see if the XL 147 is working or will they do scans more frequently? What was the dropout rate in Phase 1 and what were the reasons? How many people were given XL 147 in the Phase 1 trial, what types of tumors did they have, and what type of tumor activity did they see? How well is Doxil known to work on UPSC? Would any of the potential side effects from the XL 147 potentially preclude your doing Doxil or other chemo in the future?

After I was diagnosed with eosinophilic pneumonia last fall, I had to try to figure out what to do when the two pulmonologists I saw were recommending very different doses of prednisone (one 3 times as great as the other) as well as very different follow-up. There have been no randomized clinical trials because the disease is so rare, but from what I had read, many doctors started patients in the 40-60 mg./day dose range. I was reluctant to take such a high dose for the number of months I knew I would be on the drug. So I emailed an eosinophil expert (there is none exclusively for eosinophilic pneumonia because the disease is so rare). While he had a third recommendation for treatment, the invaluable information he provided assisted me in making my decision. I ended up going with the lower dose, and it did clear up my EP, although I still ended up with a stress fracture in my hip and femur due to the prednisone. But imagine if I had gone with a dose 3 times as high! I feel I was able to make the best decision for me because I sought out the best minds to assist in my decision-making process. So I wonder if there might be someone who has in-depth knowledge about XL 147 that you could call or email? Perhaps the researchers from the Phase 1 trial? I feel that information is power, and the more you can learn about this drug as well as the Doxil which will be your treatment if you decline to participate, the more well-informed your decision is likely to be.

Good luck, whatever you decide, Linda!

MoeKay/Maureen

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

From what I understand, Phase 1 of a Clinical Trial is the FIRST time humans have taken the drug and is simply to make sure the drug is SAFE to take. Usually healthy people are PAID to take the drug; no sick people participate. If the drug doesn't show side affects in Phase 1, then Phase 2 is when a smallish sampling of a well-defined SICK population (88 pp. in this case) take the drug to see if it actually WORKS to slow or halt the targeted disease. The number of people involved has to be large enough that the data is relevant, but small enough that it is affordable for the researcher because the drug company is footing the bill for all the testing, monitoring, & they provide the drug free to the participants. In Phase 3 & 4 Trials the number of participants goes way way up, but now participant's private insurance is sometimes picking up the tab (for those with great insurance like mine). I've read that you have to be careful with Phase 3 Trials that you aren't stuck paying for the experimental drug personally out of pocket.

Anyway, this is a Phase 2 trial. I wish it was a Phase 3 Trial because I think my insurance might have actually funded it (as they cover all CT/PETs, all Nuelasta, & anything else prescribed to date), and the drug would be further along in testing. But then again, my insurance may have denied covering an unapproved experimental drug, and then I'd have to pay out of pocket to participate. So maybe the smaller Phase 2 Trial is a lucky break for me after all since the drug company investors will be footing the bill and I still get to try something that is many years away from being FDA-approved. Maybe the stars are all aligned for me to do this.

Thank you everyone for all input and support! I'll look for that magazine article. I really think I might do this trial!

MoeKay
Posts: 306
Joined: Feb 2004

Linda, here is a link to some interim data from Phase 1 and Phase 1b/2:

http://www.news-medical.net/news/20100608/Interim-data-from-multiple-ongoing-trials-of-XL147-PI3K-inhibitor-to-be-presented-at-ASCO-2010.aspx

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

they don't call me "no detail too small" for nothing. i want to hear everything, step-by-step as you go on this journey. i do hope you are enrolled in the protocal close to your time frame, because i wouldn't want you to miss out on what seems a very promising prospect. so glad your gyn-onc was fearless enough to just tell you to do it. wish more of our doctors were like that; and i do agree, the ones that aren't are no doubt covering their rear ends.

i'm feeling very optomistic about this trial, linda, though all the procedures you need to go through beforehand seem a big drag; still it all seems worth it. so do keep us posted.

waiting with bated breath for all the latest breaking news....

sisterhood,
maggie

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I hope you are able to meet your timeline to be in the clinical trial. And of course we want to hear about the process you will be going through. As you said it may be helpful for some of us in the future.

You definitely have done your research, as usual, and are able to make an informed decision. Glad your onocologists are supporting your decision. Here's hoping you have minimal side effects and mush shrinkage of your lymph nodes. Wishing you the best. In peace and caring.

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Ro10's picture
Ro10
Posts: 1579
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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.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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,
maggie

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lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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!

cleo
Posts: 145
Joined: Sep 2009

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

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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. :(

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

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

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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!

MoeKay
Posts: 306
Joined: Feb 2004

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,

MoeKay

howdybooth
Posts: 44
Joined: Aug 2009

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.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

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

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

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.

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