CancerCompass message board discussion started by Afitchcutie4 on 7/25/2006 http://www.cancercompass.com/message-board/message/all,6180,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hey everyone, My name is Vicki, I'm 24 years old, Last month my friend Robyn was diagnosed with stage 4 metastic melanoma. It is in her bones and also a spot on her lung and liver. 3 weeks ago she started IL-2 therapy. I just want to know what you guys think about this route of therapy. I'm so scared. I've been doing my research online for the past week or so and every website I go on is not very encouraging. I keep seeing 3-6 month time frames... Is there any hope... Afitchcutie4 Tue, 25 Jul 2006 00:00:00 GMT Hey Vicki, I'm not familiar with IL-2 Therapy, so I really can't give you any advice on that. However, I know what you're feeling about only finding negative answers while researching online. I recommend checking out the Angeles Clinic, which is part of the John Wayne Cancer Institute in Los Angelos, CA. I'm not telling you this to bring you down more but to tell you to get your friend Robyn to a specialty clinic as soon as possible. My mom had Melanoma IV that had spread from her lymph nodes to her lungs and a spot on her spine. After using some local oncologists and trying out Interferon and 2 other oral chemos (Thalidamide and another), we took her to this clinic to see Dr. O'Day, who is a Melanoma specialist and is a nationally and internationally known speaker on the disease. My mom was in really bad shape at this time, but Dr. O'Day said that there was still hope and that he had treated and cured other patients worse off than her. Unfortunately, my mom lost her battle 3 weeks ago, due mostly from the awful effects of the oral chemo treatments that she had taken. But what I want you to know is that there are many different kinds of treatments that your friend can try. I would definitely at least go to the Angeles Clinic website and research it. This Dr. O'Day was very positive (which a patient really needs while fighting this disease), and like he had told my mom, he had treated many others worse than her. Those words echo in my head and I really wish we would've taken her there first. Her outcome may have been better. Just stay aggressive and be your own patient advocate. You and Robyn are in my prayers. Tracie, Mobile AL Tmoss Wed, 26 Jul 2006 00:00:00 GMT Hey Tracie, Thank you so much for your input, I felt the same way about seeing a specialist, however, she has no health insurance at this time and i'm scared that may be why she's not getting the treatment she deserves. From what I've read online the IL-2 treatments could and should last upto a year. I visited her this morning, before reading your mesage, and she told me the doctor said they're going to be doing a PET scan in 4 weeks and if there is no improvement, they're going to stop IL-2 and just do chemo. This completely contrasts what I've read about. She hasn't had a chance to do much research tho since she was diagnosed and a few days later admitted to the ICU for the IL-2. I don't want to scare her anymore, but i feel like i need to tell her this info before it's too late, yet i don't know what can be done since she has no insurance.. What would you do in my situation. I feel so helpless! - Vicki, PA Afitchcutie4 Wed, 26 Jul 2006 00:00:00 GMT basically at stage 4 the options are IL or interferon. Neither are very good options and havent shown much impact on survival. The chemo is a last resort when nothing else is working. I would also look into clinical trials by asking her doc or looking online. The NCI site should have a listing of open trials. God bless and dont give up. She will need you as a friend more and more. Oncrx Wed, 26 Jul 2006 00:00:00 GMT I am so so so sorry to hear about your mother. I have to commend you though for even though losing a loved one you are still advocating the discease and helping others. Remember God healed your mother by taking her to heaven with him. God Bless Afitchcutie4 Wed, 26 Jul 2006 00:00:00 GMT I do understand that chemo is a last resort but i don't understand why other people have done the IL-2 for a year in some cases and a few months in others (how much you can take) but why would the doctor be doing chemo after only 3 weeks of treatment. I've read that many people doing IL-2 don't see any results on PET scans until months into treatment. Why is he giving up so soon?!? Afitchcutie4 Wed, 26 Jul 2006 00:00:00 GMT the PET should tell if the IL is working. If tumors arent shrinking then its not working. If its not working, there is no need to continue it. It seems 4 weeks should be enough time to tell. However, I would not hesitate to ask the doc the same question. Oncrx Wed, 26 Jul 2006 00:00:00 GMT A good web site for melanoma patients is: http://www.mpip.org/index.html Check under the bulliten board section where you will have access to a host of patients who have been there and done that. Oncrx Wed, 26 Jul 2006 00:00:00 GMT Ok. Here are just a few of my suggestions to try, but please keep in mind I'm not an expert on this. I even called my dad to see what he thought. These are a few things you could try... * Call the Angeles Clinic (310-582-7900) and explain your friend's situation. See if they do or know of any organizations that may help with expenses (charitable organizations). You may could also see if they have any payment plan options -(maybe something that they would base on her income since it may be pretty costly). I do know that the first consultation visit (without insurance) is $550.00. Also, contact their "Current Enrolling Clinical Trials" department (310-231-2180) and see what clinical trials they may have to offer your friend. The Angeles Clinic also has a website at www.theangelesclinic.org that you may want to check out. * You can also try calling The American Cancer Society at 800-ACS-2345. Tell them of your friend's situation and see if they can offer any help and/or suggestions. They can also give you some names of organizations (if they don't offer this themselves) that can help with airline expenses and such. You can also go to their website at www.cancer.org. * You might also ask your friend's doctor if he we be opposed to contact Dr. O'Day via phone for a consultation. I know Dr. O'Day was wanting to work directly with my mom's doctor here locally. If there is a treatment that is offered locally where you are that Dr. O'Day would want your friend to try, then her local doctor could administer it to her without flying to California. Doesn't hurt to ask her doctr. Some doctors may be opposed to it, though. But do check. I hope this information helps out. You just can't give up and tell your friend the same. Thanks for the condolences on my mom. It has been very difficult, but I just have to take it day by day. My mom was only 53. I actually got on this website to see if there were any support chat rooms and stumbled across this message board. I figure that if I can just help one person with some information, that it would make me feel better. Anyway, try these suggestions and see what they can do for you. I hope you get some good news. Tracie Tmoss Wed, 26 Jul 2006 00:00:00 GMT My friend Jamie was diagnosed with metastic melanoma 3/05. She was given 6 months to live, she lived 18 months. She never gave up, but the cancer just spread like wildfire through her body. I would advise your friend to seek out clinical trials or ANY kind! I think that is the only reason Jamie lived as long as she did. After her doctors gave her chemo and the regrowth of her cancer started the basically sent her home to die...that was only six months into her illness. Jamie sought out clinical trials and I really believe that is what gave her the extra year. So sorry about your friend I really can relate...Jamie was only 33 and left behind three children 14, 8 and 21 months and a husband of 15 years. I will pray for your friend and also have her try to get on medicaid. If she has been told she only has a certain amount of time to live she should have NO problem getting medicaid. The only problem with medicaid is they want you to be basically broke before they give it to you. You can only have $2000.00 in the bank..no more than that at any time. I know because I dealing with them for my mom who is dying of small cell lung cancer. Sorry to rattle on so....best of luck to you and your friend. Sandy Saber92973 Tue, 12 Sep 2006 00:00:00 GMT