MIF is an invaluable resource for those diagnosed with all stages of melanoma! When I was diagnosed with melanoma in 2008, I learned so much from MIF. The forums were a great place to go for support and encouragement and the entire website is packed with easy to read information. This website became somewhat of a 'friend' to me when I was newly diagnosed. Now that I'm 4 years out, I enjoy helping others on the forum who are newly diagnosed and afraid.
I was diagnosed with two melanomas a few years ago, had them removed, and began seeing my skin cancer doctor once every two months from that point on. In January 2012, I went on a cruise to the Caribbean and, upon returning, found that there was a new melanoma on my back. Although it was smaller than 1 cm, it was still the largest I had up until that point. I was emotionally distraught and unable to function. I found the Melanoma International site, which allowed me to share information, become more educated, and get ideas for how to deal with all aspects of this difficult cancer. In turn, I have been able to correspond with others in similar situations and, hopefully, provide them some comfort and guidance as well. This is an invaluable resources to help deal with what can be a deadly disease.
The Melanoma International Foundation is a powerful advocate for melanoma patients. Additionally through their webinars, forums and scientific advisory board, they keep patients up to date with the latest clinical treatment and guidance, offering a lifeline to patients like myself, giving me more knowledge, tools and perspective from leading experts, a great supplement to my relationship with my own doctors. For example, the recent webinar on Gamma Knife treatment for brain metastasis helped me understand a number of subtle issues that I was not aware of from discussions with my own doctors. Also, the forums help me stay up with the latest clinical trial happenings (i.e. specific information such as from paticipants and recruiting experiences) ,information that would be almost unobtaianable otherwise.
I was diagnosed in June 2011 with Melanoma at age 29. I personally had never met anyone who dealt with melanoma and found no support groups in my area to help me with my diagnoses. While searching the web I came across the Melanoma International Foundation, and I'm so glad I did. Their website answered my questions, referred me to specialist and provided forums where I could interact with others who were going through the same things as me and some who had already be through it(including founder Catherine Poole who regularly answers questions). I don't know how I would've got through without this great resource!
I received news within the last six weeks that I have Stage IV melanoma. This has been a most shocking revelation, completely out of the blue, without previous or current other evidence of disease than a tumor on my lung. Such a diagnosis raises innumerable large questions, and, though some of these can be answered by doctors, they are not always there to answer them at the time they arise, not prompt about getting back to patients, and sometimes overwhelming one in a short period of time with information that needs sorting if it is going to be of any use. Besides, in a disease that is as individualized in diagnosis and potential treatment, to what doctor does one go to get the best care? With all these questions and concerns, I have found the one strong and safe refuge through these weeks has been the International Melanoma Foundation, most specifically its forums that have allowed me to interact with and learn from others in my situation who are further along in their journey, and through this and phone and email contact with its most knowledgeable and incredibly available and deeply caring head, Catherine Poole. I dont even want to imagine how much more difficult the road would have been so far without this amazing resource. I cannot praise it and Catherine's guiding hand enough. Just in the past day, I was faced with the stunning news that my cancer may have spread from lung to brain, on the basis of an ambivalent MRI reading. After numerous unsuccessful attempts to contact my oncologist or his office, I turned to MIF and received excellent advice and support from fellow Forum members and Catherine herself that have helped me make good decisions about steps forward and put mind and emotions at ease as I write this, both mine and my wife's. I am so grateful.
I was diagnosed with MM in 2010, I was very scared by the word Malignant already dealing with CLL (Chronic Lymphocytic Leukemia) I searched on the internet for some realistic advise and understanding on MM and what I should be asking and expecting. With the of MIF I gathered a better understanding and it made the anxiety somewhat less. I knew if I didn't understand I could ask there and they would help me. I knew to ask about a sentinel node biopsy (came back clear) and they explained what a WLE was. Never was I made to feel that a question was dumb, or trivial I still go back and read, knowing that CLL especially now after Chemo Therapy can predispose me for skin cancers...Thank you for your time...Gillian Capewell
Faced with learning I just became Stage 4 Metastatic Melanoma in December 2009 with the doctors telling me that surgical 'treatment' was no longer an option and I needed to enter a clinical trial if I had any hope of "continuing on" I set out to find assistance from a melanoma specific cancer navigating organization (as my Oncologist Surgeon and Hematologist Oncologist and their 'support' staffs left me on my own to fend for myself in learning about clinical trial options, how it all worked, etc.) I was very fortunate to have found Melanoma International Foundation's website with a huge amount of reliable and current information that was well organized. I also called the offices with some of my questions and was promptly answered by a very helpful, 'live' person, and even though it was 5PM (and on a Friday) Catherine Poole stayed on the phone with me for about half an hour answering all of my questions with patience, compassion, and very detailed knowledge about melanoma treatment options including the mechanics of navigating the maze of steps needed to get into a clinical trial. This is a genuine comment: That I definitely credit Catherine and the Melanoma International Foundation in part that I am still alive (and thriving :) !!) 2 1/2 years later, for to be on one's own to wade through all of the info that is available online when an internet search turns up thousands and thousands of information bytes (only some of which is reliable, much of it is outdated, and all of it is confusing...) is not how to proceed. And in the past 3 years I have yet to find another source, either online or in print, that comes any where near to being as vast and helpful.
As a nurse practitioner and Stage IV melanoma patient, the MIF forum has been extremely beneficial to me, and I am certain it has provided resources to many others. This forum, as opposed to some others, is monitored by personnel with knowledge about the disease. As a medical professional, it drives me crazy to see myths and falsehoods promulgated as valid treatment options on other sites. This site requires that information posted be evidence based. Additionally, I have made personal contacts, who, while I have never met them in person, are now my friends and supporters as I traverse this strange Melanoma Never-land. Hopefully, it has even allowed me to help others when I post information that I have been in a unique position to provide as a medical provider and patient in a phase 1 trial. It is a valuable tool for patients and their families in search of support and information.
I found the Melanoma International Foundation forums after I was diagnosed with melanoma last year. I didn't know much about the disease and was scared. The information on the forums, the website itself, and the support that was provided was amazing and instrumental to not only my mental well being, but also provided me with the questions I needed to ask my healthcare providers. I feel a great sense of relief that MIF continues their educational efforts and that their forums are still maintained and hope that other melanoma patients are aware of this amazing resource. Thank you MIF for all your help!
When I was diagnosed with Melanoma I went looking for answers. I foud MIF during my search and was surprised by the amount of information and especially support you can get from others in your situation. They are a great resource no matter what stage you are in or if you are simply trying to help a friend or relative. I learned a lot from their forums and felt so much better after reading what they and others on the forums had to say about my and their concerns, problems and treatments.GThey helped me tremendously.