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Medical Forum / Diseases and Disorders / Cancer / March 2008My friend had ovarian cancer, now it spread to surrounding tissues.
Hello every one, I am very new here, I am very desperate right now.. if any one can suggest me if there is any resource, facility, clinical trials or anything can be done for her. She was diagnosed by ovarian cancer three years back, she had developed ascites at that time, actually thats how they knew about cancer. Than total hysterectomy was done followed by chemo. She has been on chemo since, last year in Nov last session of chemo was done, and again very severe ascites ws there. Dr are saying that cancer cell are in the surrounding tissues, not in any organ. They took the sample of her fluid and did some sensitivity test for chemo, bur it turn out that these cells are not sensitive to any drug. I dont want to give up, she is my best friend, she is just 45, please tell me what to do??? I dont want to give up.. please I am begging you ! God bless you! > Hello every one, > I am very new here, I am very desperate right now.. if any one can [quoted text clipped - 13 lines] > I dont want to give up, she is my best friend, she is just 45, please > tell me what to do??? Hi Saima, I searched clinical trials with ovarian AND resistance (exactly like that) and from results found http://clinicaltrials.gov/ct2/show/NCT00001944 Completed - ask if there's a Phase II upcoming http://clinicaltrials.gov/ct2/show/NCT00001383 Completed - ask if there's a Phase II upcoming http://clinicaltrials.gov/ct2/show/NCT00072202 currently recruiting - no longer accruing patients with ovarian cancer or lung as of 3/01/06). - ask if anyone's dropped out and therefore again recruiting http://clinicaltrials.gov/ct2/show/NCT00002487 - it's Canada, probably not the country you want http://clinicaltrials.gov/ct2/show/NCT00086892 Completed - ask if there's a Phase II upcoming http://clinicaltrials.gov/ct2/show/NCT00487786 currently recruiting ----------------------------------------------------------------------- Now you search - http://clinicaltrials.gov/ct2/search solid AND resistance then ovarian AND refractory then solid AND refractory ________________________________________ If there's no good choices there, ask on the GYN-ONC email list here http://www.acor.org/mailing.html?l=g Click on the list name and follow instructions. Someone there will email you so you can send message through. Tell them what you are seeking and the country your friend is in. Good luck. J Thank you so much for the info J. My friend lives in kentuckey, lx Regards, > > Hello every one, > > I am very new here, I am very desperate right now.. if any one can [quoted text clipped - 41 lines] > Good luck. > J > Thank you so much for the info J. > My friend lives in kentuckey, lx Saima, I'm sure you care very much about her and want to help her. Clinical trials, early Phase are highly experimental; they may do nothing for her but waste her time, at best or make her worse It is obvious that cure is no longer possible for your friend. If you live nearby, you may wish to help her find home hospice care. They would work with the oncologist to keep her as comfortable as possible with as few complications as possible. Common problems of advancing disease are listed here: http://www.nursingcenter.com/prodev/ce_article.asp?tid=578782 Talk with her about what is written here http://www.gyncancer.com/ovarian-cancer.html#whattodo The decision to not take more cancer treatment does not mean to choose death but rather to choose life, for however long it is to be, free of the burden of chemotherapy. Let us know how she (and you) are doing. Keep in touch. Hugs J > > Thank you so much for the info J. > > My friend lives in kentuckey, lx [quoted text clipped - 17 lines] > Hugs > J Dear J, I really appreciate your response, this world will be much better place if there will be more people like you. Please dont say that there is no treatment for her now... tell me about some alternatives http://www.immunemedicine.com/ I cant imagine anything bad,Please please pray. My mind is just not working right now. Lots of prayers for you too. > > > Thank you so much for the info J. > > > My friend lives in kentuckey, lx [quoted text clipped - 30 lines] > > Lots of prayers for you too. Hello Saima, First rule of doctors: Do no harm. There's 1,000''s of unproven claims out there. They create false hope. That is harm. Trying something untested can be harmful. For many years, I have been digging in the clinical trials, searching out clinical trial results, reading sci.med, misc.health. alternative and a number of foreign language cancer newsgroups. When I see a name of a clinic or doctor or medecine, I research it myself, on the internet and through all newsgroups, to see if I can find someone who has had success with it. I find claims but they don't pan out. No proof or researching I find only tested in labs ; petri dishes or rats and mice OR only pan out as something that might be good for prevention. Peter Moran is a doctor. He's been doing the same, his way, always searching for some thing or things that have proven to cure or extend lives of cancer patients. This doctor is doing similar http://www.pathguy.com/altermed.htm Researchers, around the world, are searching, testing, trying to find products that will help. If I find something new, I post it to sci.med.diseases.cancer, then research if it's in clinical trials. Here's an example. http://www.consumerreports.org/cro/health-fitness/drugs-supplements/creature-fea tures-can-boost-health-1-08/overview/creature-features-health-boost-ov.htm I saw it in a magazine. No clinical trials yet and it's for brain tumors. If I hear something on TV or in newspapers, I research it and post about it. A man was on this newsgroup, claiming something helped his mother with ovarian cancer. It's in tests for colon cancer now http://clinicaltrials.gov/ct2/results?term=resveratrol Unfortunately we won't know if it's useful for quite a while and don't know the dosing. That's why they do clinical trials. Too much can do a lot of harm. So many people, around the world, trying to find help for people like your friend, and might I add, their own family members and friends. If there was anything, it would be all over the news, worldwide. I'm sorry. We'll all keep looking. Meantime, thank you for the prayers. I'm sure many reading are praying for you and your friend. J > Thank you so much for the info J. > My friend lives in kentuckey, lx Hello Saima, I searched for clinical trials in Kentucky http://clinicaltrials.gov/ct2/results?term=kentucky+AND+ovarian+AND+cancer&pg=2 Tell me please if you see a list of 60. I looked at the ones "Recruiting" and this is perhaps the only one I might consider http://clinicaltrials.gov/ct2/show/NCT00262990 It's a Phase III. Some get patupilone and some get pegylated liposomal doxorubicin. It's randomized so she cannot choose which she would get. She would have to meet the Inclusion and Exclusion criteria. So, but I went to look for prior studies of patupilone. This one's Phase I http://jco.ascopubs.org/cgi/content/abstract/23/36/9120 PURPOSE: To evaluate the safety and maximum-tolerated dose (MTD) of weekly patupilone, a natural epothilone B, in patients with advanced solid tumors. PATIENTS AND METHODS: Patients were treated with patupilone (0.3 to 3.6 mg/m2) for 6 weeks on/3 weeks off or 3 weeks on/1 week off. Dose-limiting toxicities (DLTs), MTD, and pharmacokinetics were determined for each schedule of administration. RESULTS: Ninety-one patients were enrolled. The most common tumor types included ovarian, breast, and colon cancers. Doses of patupilone less than 2.5 mg/m2 using either the 6 weeks on/3 weeks off or the 3 weeks on/1 week off schedule were tolerated well. At higher doses, DLTs were observed using both dosing schedules, with diarrhea the most common DLT. The MTD for both treatment schedules was 2.5 mg/m2. After a short infusion, patupilone blood concentrations declined in a multiphasic manner with a terminal half-life of 4 days. Drug clearance was nonrenal and was not related to body-surface area. Over the dose range evaluated, systemic drug exposure was approximately dose proportional. Three patients achieved a partial response, and 31 patients had stable disease. Two patients experiencing a partial response had received prior taxane therapy. CONCLUSION: Patupilone is well tolerated when administered at a dose of 2.5 mg/m2, using either a 6 weeks on/3 weeks off or a 3 weeks on/1 week off schedule. In contrast with murine studies, patupilone has a relatively prolonged terminal half-life in humans. The partial responses in patients previously treated with taxanes is consistent with promising preclinical results. -------------------------------------------------------------------------------- Some questions I would have: Do I want to be on it for 6 weeks, then off for 3 (or do I have better things to do with my life) Was I already on doxorubicin? If so, since it's randomized, I don't think I want to take chance of being on it again. And, how do we know that I won't have "stable disease" doing nothing for a while? -------------------------------------------------------------------------------- Then there's this http://patient.cancerconsultants.com/CancerNews_Ovarian_Cancer.aspx?DocumentId=40354 Intraperitoneal Catumaxomab Effective for Malignant Ascites in Ovarian Cancer CancerConsultants.com - News 8/20/2007 According to an article recently published in Clinical Cancer Research, intraperitoneal infusion (administration of medication directly into the abdomen) with the investigative agent Removab® (catumaxomab) helps reduce malignant ascites due to ovarian cancer. Ovarian cancer is the most deadly of gynecologic cancers, with the vast majority of cases diagnosed once the cancer has spread from the ovary to other sites in the body. Malignant ascites refers to a condition in which excessive fluid accumulates in the abdomen. The fluid typically contains cancerous cells. Malignant ascites can be caused from advanced cancer growing in the abdomen and preventing the normal draining of fluid. The condition is associated with a significantly decreased quality of life, ultimately compromising the ability to move, eat, and/or breathe normally. Patients may be treated with standard therapies, such as chemotherapy, to shrink the sites of cancer throughout the body and potentially help relieve malignant ascites. However, some patients have cancer that has stopped responding to standard therapies (refractory disease). These patients often undergo paracentesis, a procedure in which a needle or tube is used to drain the fluid from the abdomen. Paracentesis is often painful or uncomfortable for the patient, and is typically performed on an ongoing basis to relieve the fluid buildup. Catumaxomab is a monoclonal antibody that has been developed to target specific components of cells. Catumaxomab links immune cells to the cancer cells, ultimately enabling the immune system to kill the cancer cells. Researchers from Germany recently conducted a clinical trial to evaluate catumaxomab for the treatment of malignant ascites among women with refractory ovarian cancer. This trial included 23 women who were treated with 45 infusions directly into the abdomen of catumaxomab within 913 days. All women experienced a reduction in ascites. 22 of the 23 patients did not require paracentesis following the last administration of catumaxomab to the 37th day of the trial (end of the study). Catumaxomab had acceptable side effects. The researchers concluded that peritoneal administration of catumaxomab is an effective and well-tolerated agent for the treatment of malignant ascites among patients with refractory ovarian cancer. Patients with malignant ascites may wish to speak with their physician regarding their individual risks and benefits of participation in a clinical trial further evaluating catumaxomab or other promsising therapeutic approaches. Two sources of information regarding ongoing clinical trials include the National Cancer Institute (www.cancer.gov) and www.eCancerTrials.com. Reference: Burges A, Wimberger P, Kumper C, et al. Effective relief of malignant ascites in patients with advanced ovarian cancer by a trifunctional anti-EpCAM x anti-CD3 antibody. Clinical Cancer Research. 2007;13:3899-3905. More News & In Depth Ovarian Cancer Information -------------------------------------------------------------------------------- So I ask myself, does my insurance cover? Would I have to be in hospital? I ask myself would I rather intraperitoneal infusion or paracentesis, from time to time, instead? What's the downsides of each? Would be my questions. -------------------------------------------------------------------------------- I think I've exhausted the clinical trial issues. It's probably easier if she asks her oncologist. As long as she understands, that many don't pan out. Then, if safe enough, they're sometimes combined, for clinical trials, with chemos she may already have tried. J > Thank you so much for the info J. > My friend lives in kentuckey, lx Tell us about her, Saima. What's her life like now? Is she well enough to go for outings? Is she in the city or living in the country. Family? Has she always wanted to travel or visit friends or relatives? Or them visit her? Going fishing? Camping near a lake? What does she love doing that she's not been able to do because she's been on chemo for so long? Painting? Playing in an orchestra? Baking? Volunteering with kids at school? Gardening? Beautifying her yard? Finishing a project like looking through keepsakes in the attic? Visit some places with you? Building tables and chairs; other? - What's her 3 wishes for pleasure? I don't know much about Kentucky living. She might appreciate taking a break and doing some of her favorite things and looking at clinical trials a bit later. Hugs J > > Thank you so much for the info J. > > My friend lives in kentuckey, lx [quoted text clipped - 16 lines] > Hugs > J Dearest J, I wasn't able to open this group earlier, i am so sorry for that. I don't know how to thank you for doing all the research, and all the typings. Human being is such a weired creature, when it begin hurting it destroys homes and countries, but then there are some noble souls help save others life just for the sake of God's pleasure. My friend has 5 children, 4 girls and one boy. All of them are extra ordinary intelligent, position holders and very very humble human beings. She herself is a doctor, very talented, intelligent, full of life and hope. She has touched the life of hundreds of people by her caring and loving attitude. She is a giver, I know she love to give charity, helping others is her passion. She love to reach out, meet other people, help others, heal others. Right now they put a tube, in her abdomen, for ascites. Ascites is blood tinged so it look scary. there is NG tube, as she had developed very bad gastric infection, so she was throwing up, she didn't eat any thing since three weeks. I hope her infection become cleared, and than Drs can find any miraculous medicine. i wish one day she will be all Ok, i will talk to her on phone for hours, I will listen her strong laugh, and jokes. i wish she wil see her grand children. i am praying for her. but j, tell me why r you helping others. Why you care so much? I hope nothing went wrong in your life. I pray that everything will be always OK with you. Am I making any sense to you, perhaps not, i cant think anything else other than her. Hope you dont mind. I will ask God to heal her, He has all the powers, He can do anything, He can prolong her life. Take care, > > Tell us about her, Saima. > [quoted text clipped - 28 lines] > > i am praying for her. I'm so sorry I'm late, Saima. She sounds like an angel - a dear, dear person so wonderful to have as a friend and a gift to the world. Pleased to read they've addressed the ascites, but sorry to hear about the infection. How's she doing now? I do so hope they can help her get well enough to get out of the hospital. Please stay in touch and know I'm here, caring Hugs to you all. J Hi J i went Ky on wednesday, and back on saturday. She was in hospital, with NG drain coming out of her nose, iv on the hands, she has bruises from the pricks all over her hand. She has lost weight, but her both legs were very swollen, i mean they are very vey enlarged now, with pited edema. Nothing by mouth for a month now. But her spirit is high, she is in pain, but her face was not expressing pain. But there was this serene peace on her face, with her deep, intelligent big eyes, she speaks through her eyes :) There was this amazing tranquility around her, which engulf her family and friends. There were ppl constantly coming in, from all cultures and race, and she was the most welcoming. She was holding their hands, telling every one that she wants all of us to be very strong. she said" i want that you and me both earn the supereme reward of patience" Who ever goes to her, she hold the their hands with so much love and request that they should start one good deed for her. I am glad that i visited her, but my heart is filled with her respect and love. and it is so hard for me to accept this reality, plz pray for the miracle. regards, saima > Hi J > i went Ky on wednesday, and back on saturday. [quoted text clipped - 20 lines] > and love. and it is so hard for me to accept this reality, plz pray > for the miracle. Your friend's a miracle; a gift to all of us, Saima. Thank you for sharing. I'm so pleased you were able to go see her and be with her. Please stay in touch and let us know how you're doing. You're never far from my thoughts. Please be assured that many readers are probably praying for you and your friend and her family and friends. J > > Hi J > > i went Ky on wednesday, and back on saturday. [quoted text clipped - 29 lines] > friend and her family and friends. > J She passed away this Thursday morning! I went to see her last time, her funeral was on Friday noon. I saw her face, she was smiling, her face was not blank but filled with happy expressions. There was this amazing dignity around her, I cant explain that feeling. When I saw her, I thought she had so much to tell me. Her face was telling me that she won! She is winner... I cant explain what i saw on her face, it was like her closed eyes were looking at something very special. She was more than smiling, her shinning front teeth were showing. I want to call her, I want to talk to her, I want to know what happened, but I have to be like her to be with her. I was taking her for granted for years, she was my support, my friend, my sister, my leader and my mentor. She taught me how to live this life to achieve the eternal pleasure. I am praying tha may my life will be like her. > > Please stay in touch and let us know how you're doing. > [quoted text clipped - 18 lines] > > I am praying tha may my life will be like her. Hello Saima, You're almost like her; somewhere out there, there are people who deeply admire you. You will be a mentor, if not already. You are very special: I really mean it. Someday you will be with her; but not now; the world needs you and more people like you. I'm sure you'll want to call her; hear her voice. i did after friends or loved ones passed away. If she had a message on her phone, call and tape it so her voice will be with you forever. Thank you for this tribute to her. Take care of you, on your journey through life. J > > > Please stay in touch and let us know how you're doing. > [quoted text clipped - 34 lines] > Take care of you, on your journey through life. > J Dear J Thank you so much for your nice reply. I wish that I will have some characteristics of hers, I am trying. She is constantly in my mind, and in the mind of so many other people. The one amazing quality she had was that every one thinks that she love him/her more than others :) And she very uniquely loved every one. She told me last thursday : "you can invite people to the truth in health and in sickness too." And I found that her good deeds were more meaningful while she was sick. We all were very much inspired by her sincerity to others. The way she used to feel for others was very important. Whenever she was asked by this question: How are you doing? Her answer was always," I am thankful to God in all the conditions" and thats it, nothing about the nausea and vomiting, nothing about the sleepless night, nothing about how she was spending her nights sitting since months, nothing about the horrible pain. She never told others except for very few that what is going on inside her. How much pain is there. By looking at her, every one start loving God, she never complain about this unfortunate disease, she was the most submissive. There are so many things to tell about her. She saturate my life and life of others, in such a beautiful way, that she will always be with us. Her body might not be present with us, but she will always always be here. I want the whole world to know about her,specially the people here, who are suffering. You can make a impact on others, by being strong, being thankful, being sincere. May God heal the soul and body of all of us, as the diseases of soul are much more harmful than the body. Take care, |
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