Living with Metastasized Breast Cancer. forum: Clinical Trials
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| I was stunned to learn that my breast cancer that was discovered in June, 2009, and addressed with mastectomy and chemotherapy in the following months had metastasized to my thigh bone in about a year (large tumor found in September, 2010). Since my lymph nodes at mastectomy were all negative, I had thought I was home free. My original tumor was "triple negative" so I was not a candidate for drugs such as Herceptin or Tamoxifen. My doctor was going to try some other chemotherapy drugs when she found a clinical trial for a "PARP inhibitor"-- a substance found in 2009 to be helpful in preventing cancer recurrence. I applied, was screened. and accepted into the trial in November, 2010. I understand that applications for the trial are being taken until late March, 2011. If you are interested, check the Internet. This is a "Stage 3" trial, so all participants get the study drug and are aware of other drugs in the protocol, unlike some other types of trials where placebos are used. I would be happy to share my specific experiences with anyone who might be interested. Living sustainably comes with learning to see the world in a new way. |
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| "I had thought I was home free." This disease really can be a roller coaster ride. I'm glad you were able to get into the clinical trial!  Circles of Support for Breast Cancer I'm learning to dance in the rain! Thank you, Sally & Chris. |
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| This is a disease that is very unpredictable. Please keep us updated on how your trial is progressing. There is so much being done in this field that there are changes every week. Put your hands to work in these cubits: Arrangements 101 and/or Hands at Work Share your travels with us at: Travel Junction - Contest |
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| We are so lucky to be living in this age. So many dedicated people working on a cure and treatments to make our lives better. Who would have thought how close we are to developing drugs that will target cancer cells. Or working on radio waves that will destroy carcer cells. It is a slow process to get new treatments approved, but it is the best we have for now. Yes, Sally let us know how the Trials are coming along. |
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| There was a communication from the drug company (sponsors of the trial) to the people administering/conducting the trial to the effect that a previous study had not "met expectations" for disease-free progression and overall survival among "first line" survivors (those who had not received additional chemo after diagnosis before entering the trial) and those "second or third line" patients who had chemo after metastasis was diagnosed. They were asking that patients in the current trial be advised of these findings. I was concerned about this on several fronts: First, I was worried that they would try to limit participation in current and future studies to second and third line patients in order to improve their results. I was also concerned that the study from which they had drawn this finding used only a very small number of patients. I know enough about statistics to know that the sample size must be large enough to represent the total population for the study to be meaningful. I also know that statistics say nothing about individual patients or members of the sample. I am interested in seeing how the drugs in the study affect my illness; that will be apparent only in future scans and evaluations. Living sustainably comes with learning to see the world in a new way. |
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| Really, all the different treatments are a trial (not clinical) what works for one may not work for another. And then they quit working, so you move on to the next. Each treatment I am on I hope that when I'm done It will work for at least a year, just to give me some normalcy, and get away from the chemo for a while. Living from scan to scan. My techs are beginning to know me very well. It's like visiting old friends. Numbers can be deceiving, you are smart to do your own evaluation and make the choice that is right for you. |
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| Well, the fears and suspicions expressed in my Feb. 27th post were well-founded. When I went for my treatment yesterday I was given a "Dear Patient" letter from the company manufacturing the drug and sponsoring the clinical trials. The letter stated that they were no longer accepting first-line (no chemo after was found) into the trial and unless present first-line patients (such as myself) sign a revised consent form stating that we know the trial may not prevent disease progression or lengthen our lives and our doctor states that the drug seems to be working (on a case-by-case basis) we will be excluded from continuing in the trial. I will have my next scan in about two weeks, so those results are more crucial to my future than I had expected. Wish me luck! BTW, with all the current emphasis on reducing government spending, expect federal funding for clinical trials to become even harder to obtain in the future. This will mean increasing self-funding of studies by drug comapnies who are looking at profits more than patient well-being. Iu id like to believe that our taxes pay for worthwhile projects and programs that will benefit the greatest numbers of people in need. Clinical trials should not be regarded as wasting money. Living sustainably comes with learning to see the world in a new way. |
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| I'll keep praying for good scan results showing this chemo is working like gangbusters for you! I've been a researcher (although not in human trials), so I'd like to add that I don't think the company's decision is about "improving their results"... it sounds like they're following FDA guidelines for clinical trials (at least as much as I understand them). "Experimental" treatments that have had mixed success or that have risky side effects are often allowed to be offered only to patients for whom other treatments haven't worked. I'm glad they are allowing patients to continue if the protocol seems to be working for them; I just wish (as I'm sure they do) that the treatment was proving generally effective for first line patients. You're right about the result of reduced federal funding for research (including clinical trials)... I don't know that companies will necessarily choose profit *over* patient well-being, I'd rather hope that they take both aspects into account, but they will have to be more concerned than ever with the profit-generating potential of a drug. That means more company R&D money for drugs for chronic issues like arthritis and diabetes, and less R&D for drugs to treat rare cancers... all drugs are expensive to get to trial & production, and it's hard to break even on drugs that are used by only a few patients for a short time. That's where federal and other non-corporate grants come in, and that's why foundations like the American Cancer Society are so important. We're continuing to cheer you on! Circles of Support for Breast Cancer I'm learning to dance in the rain! Thank you, Sally & Chris. |
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| Hoping that your scans come back showing improvements. It sucks when our future and treatments hang on to each scan. We go through so much and then find out things are not working. But we keep on going. Many coming you way. |
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| Thanks, Critter and Chris. I don't think nay of us expected to e living such a nightmare! Living sustainably comes with learning to see the world in a new way. |
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| Circles of Support for Breast Cancer I'm learning to dance in the rain! Thank you, Sally & Chris. |
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Oh my goodness, Sally - wishing you luck and sending lots of love and hugs your way for better news to come.  Breathe in, Breathe out...Move on - Jimmy Buffett |
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| I have you in my thoughts and prayers as well for improvement. I don't know much about clinical trials so cannot offer any personal experience. Let's just stay positive that the scans come back with better results. Put your hands to work in these cubits: Arrangements 101 and/or Hands at Work Share your travels with us at: Travel Junction - Contest |
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| Thanks for the thoughts, prayers, and good wishes. We also found out that our insurance company had lied to us about waiting for Medicare to reject our claims before reimbursing us, since I do not have Medicare Part B. It turned out that the insurance company had mistakenly listed my husband as a retiree, though he is still fully employed. They were figuring it was just our tough luck that I had not enrolled in Medicare, but in fact they are required to be our primary insurer as long as my husband is employed. What a mess! We have quite a bit out of pocket to pay bills that should have been reimbursed by the insurance company. Living sustainably comes with learning to see the world in a new way. |
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| Sally, so sorry for the added burden of taking on the insurance company. All it takes is one mistaken key stroke to file things up and it's like a snowball going down hill. I don't know how many times I have instructed the registration clerk not to touch a thing regarding my insurance, nothing changed. They always think they know more about your insurance then you do. I have been there. I have processed dental claims for years so I have heard all the excuses. I play hard ball with them.  Ok stepping off my soapbox for now.  |
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| Argh, sorry you have that extra mess to deal with. Any kind of glitch can feel overwhelming to deal with when you're in the midst of treatment.. See if your hospital or clinic has a patient advocate type of person who can help you straighten it out. That's what it took to straighten out an out-of-network issue with my first hospital stay last summer, when the hospitalist submitted a claim for outpatient service (not covered, but how could I be an outpatient when I was in a hospital bed for 3 days??)... I was still going in circles with it when I went into the hospital again, and this patient advocate person came around and asked if there was anything I needed help with.. and she got it fixed! Circles of Support for Breast Cancer I'm learning to dance in the rain! Thank you, Sally & Chris. |
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| We think the insurance snafu is being taken care of, though it may take some time. Insurance is in DH's name, so he is the one dealing with this. Thanks for your suggestions. Living sustainably comes with learning to see the world in a new way. |
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| I'll keep my fingers crossed! Did you have a lot of paperwork to do in connection with the clinical trial? I'm sure you had to sign an extra legal paper or two, but I wondered if they wanted more in-depth medical or family history info or other things while determining your eligibility... or maybe your doctor's office handled that for you? Everything I did was fairly standard, and there were still times when the patient paperwork seemed overwhelming... so I was wondering if participating in a clinical trial increased that load even further... not that paperwork would keep you from participating if it were your best option, but it's good to know what you might be getting into! Circles of Support for Breast Cancer I'm learning to dance in the rain! Thank you, Sally & Chris. |
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| I had to read and sign a consent form that ran 17 pages, but aside from that everything (including forwarding my medical history) was handled by my oncologist. Living sustainably comes with learning to see the world in a new way. |
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| Never fails, when you already have so much to deal with something else just gets piled on. Glad it is being taken care of and you can devote your time and strength to getting better. Put your hands to work in these cubits: Arrangements 101 and/or Hands at Work Share your travels with us at: Travel Junction - Contest |
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