When first diagnosed with Stage2 Melanoma I,like most others turned to the Internet. I was looking for info but also looking for patients. I found a few but this seemed superior to others. There was a moderator(Catherine Poole), there was scientific advisors and it followed the honor code. I have since become Stage 4 and the info I need is found with other posts and Catherine helping suggest trials for patients. The site is current, and very User friendly. It helps to have a Melanoma family. Nobody understands like the people walking in your shoes! Catherine Poole has made this work just like it should.
MIF is an invaluable source for Melanoma Patients. I found the site soon after being diagnosed with Stage 2 and continue to use it since progressig to Stage 3. The info on the site is reliable and the emotional support from other members has helped me through some hard times. Catherine is always there with an answer when needed.
After being dignosed with three melanomas in a fairly short period of time, I felt lost, afraid, and alone. The Melanoma Interntional Foundation (MIF) website and forums helped me get through one of the hardest experiences of my life. The eductional information, coupled with the support I received on the Stage I and Stage II forums allowed me to understand the disease and take some control in my medical care. I absolutely cannot say enough about MIFand the important role it has played in my life.
I am a four time survivor of melanoma. I have been through bio-chemotherapy, regular protocal, and radiation. I have endured four extensive surguries because my cancer spread into my lymph nodes. Each time my cancer came back, I have called MIF and I have received more information and support than I could imagine. They have been wonderful. The staff is so knowledgeable they even knew the doctors in Colorado that I was seeing. I also received so much information on clinical trials, etc. Wonderful, wonderful, wonderful. I believe I am alive today thanks to MIF. If my cancer comes back, I have been told that their is nothing that can be done because I have exhausted my life time of chemo drugs and my cancer spread to close to my chest wall last time. I am a year and half out cancer free.
As a person diagnosed with Stage IV melanoma in 2009, I found your online forums with research professionals informative and hope inspiring. My radiation oncologist even consulted one of those professionals when designing my treatment.
Since MIF makes it a priority to investigate the latest treatments and their results, it makes me feel as though I have an advocate. The knowledge I have gained from reading forums and watching reports by doctors who respectfully treat their audience as an intelligent resource has given me a very positive outlook.
The site really makes me feel like a part of a community of medical discovery, very important for a person going through a disease with so few viable treatment options. When I was first diagnosed I was told that I had about a 13% chance that a treatment would work! Pretty scary stuff.
Always great information and the support you need when you need. Appreciate the personal patient attention! And sharing of up to date news and trials. Great to be an informed patient and this helps us tremendously!
They were there for me with answers when I desperately needed it. They offered encouragement when my spirits waned. They gave me hope when I felt all was lost. It's difficult to find the words to thank the many dedicated people that serve others on this site especially since most of us at that point in our lives were in a state of shock. It's great to have a friend and especially an advocate in this most difficult journey.
I have found the support and help from the forums to be extremely beneficial. The knowledge of the contributors (doctors, Catherine and other patients) to be very helpful in understanding many medical terms and treatments. The clarification has helped me make appropriate decisions in my treatment and even in my choice of doctor. I had been seeing a local doctor for my stage IV melanoma. I thought he was a melanoma specialist. After reading different responses on the forum I realized he was not. I searched on this site for a specialist. My doctors name kept coming up as well as the cancer center. I have been going there now for three years. I've been tumor free now for 26 months!
I found the support and help on the forums and the educational webinars extremely helpful for me as a caregiver. The webinars were great at helping understand the treatment alternatives and the members in the forum have been very helpful with both support and info on where to turn. I think this forum is invaluable to patients and families who are dealing with Melanoma.
MIF has really impacted my life. My father is suffering from Malignant Melanoma. This is rare disease in India (where we live) and even reputed oncologists are unaware of the treatment. After searching for Melanoma on Google, I found MIF. MIF has helped me throughout the course of treatment. Firstly, my doctors were adamant on just WBRT(whole brain radio therapy) But I was always skeptical about it. I started discussing the issue and asked MIF's help. I got more pertinent answers from MIF rather than from doctors. Armed with the advanced knowledge from MIF, I discussed the issue again with my doctors who then referred us to another hospital having advanced machine. After that, I started discussing my father's case with MIF regularly. They guided me throughout the treatment. From NRAS mutation test to C-KIT, each and every crucial step was discussed. Moreover, I benefited immensely by the experiences shared by other senior members. It is indispensable for people who do not have access to advanced medical services in the field of Melanoma. Apart from creating awareness about Melanoma treatment, MIF provides a lot of emotional support. It provides a vent to all the frustration through which Melanoma Caregiver goes through. I had some ethical issues which were weighing a lot on my mind. I discussed it with MIF and fortunately, I found a senior member who went through the exact same situation. I wont mince my words but it literally helped me decide the most appropriate and peaceful way in which my father will die. I could not expect more.