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This community is for people with melanoma. Friends, family members and others with an interest in the disease are also encouraged to join the discussion.

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  • megm posted on the forum topic I was diagnosed with a melanoma on my ankle and after reading the discussions, I [...] in the group Melanoma:   5 days, 21 hours ago · View

    Did you get a copy of your pathology report? The pathologist typically determines what is called the mitotic rate which indicates how fast the tumor cells were dividing, so if you had a very low mitotic rate that may have been what your doctor meant when they said it was “slow moving.” Feel free to [...]

  • jvlisk started the forum topic I was diagnosed with a melanoma on my ankle and after reading the discussions, I [...] in the group Melanoma:   5 days, 23 hours ago · View

  • megm started the forum topic BRAF Mutation in the group Melanoma:   6 days, 22 hours ago · View

    Have any of you had your tumors tested for BRAF mutation? Approximately 50% of melanoma have this mutation. Let us know your experience with getting your tumor typed, i.e. did you have to request it or did your oncologist bring it up. Also, I would love to hear anyone who has been on a trial [...]

  • charles posted on the forum topic Choroidal Melanoma (Eye Cancer) Support in the group Melanoma:   1 month, 2 weeks ago · View

    Thanks for your support and insight: are there speciaized cancer centers or doctors that treat Choriodal Melanoma?

  • kathy8778 posted an update in the group Melanoma:   2 months, 1 week ago · View

    Was diagnosed 9/93 with stage 3 melanoma on my right ear. Had 1/2 my ear removed and then had plastic surgery to rebuild my ear. Had 36 lymph nodes removed also. Religion helped me get through a lot of tough days and family and friends. I am lucky to be here today to talk about it. The sad thing is that I had a spot on my ear for six years before it was diagnosed. Every time I saw a doctor I would mention the new spot on my ear and they all said it was nothing! Would like to see more mention of melanoma and prevention in the news etc. This is one cancer that seems to get very little publicity.

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      italialu · 2 months, 1 week ago

      Thank you so much for sharing your story, Kathy. Yes, melanoma used to be one of those cancers that would fall in that grey area. Originally, if one had a freckle or a spot, it was called a beauty mark but now that is not the case and vigilence is most important. I see a dermatologist about three times a year and have gotten my children appointments as a result of what is going on. Information and education is key. People need to understand that skin cancer IS serious and so there is more information out there. As such, tanning stores are getting a bad rap and justifiably so. Melanoma and prevention has been in the news more and I am confident we will see much more in years to come.

      I am so glad that you are doing well. Keep up with the appointments and be vigilant. Prior to my diagnosis of choroidal melanoma, doctors would tell me it was nothing, however, I knew that was not the case. Always trust your gut instincts and persist because you are the one who knows your body well.

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      charles · 2 months, 1 week ago

      I concur; it is one of the most serious cancers yet people dont exhibit the vigilence with annual skin exams that they should. My wife is N. European with light complexion and i have her get a full skin exam every 6 months. Need to spread the word!

  • kathy8778 joined the group Melanoma   2 months, 1 week ago · View

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      megm · 2 months, 1 week ago

      Welcome to the Melanoma Community Kathy. I hope that you find the site useful and let me know if you have any questions!

  • nieusma posted an update in the group Melanoma:   2 months, 1 week ago · View

    I was 37 when I was diagnosed with Stage II melanoma. I had beeen having yearly exams with an Atlanta skin cancer specialist because I knew being fair haired and light skinned, not to mention the terrible damage I did throughout my youth with baby oil, spring breaks and tanning bed, that I had to be diligent about skin cancer. I found a mole that I just knew wasn’t right. The Atlanta doctor insisted nothing was wrong…so I let it be. They would know if something was wrong, right? A year later, I just knew something wasn’t right with this same mole. It was itching a little bit and seemed to have gotten bigger…still round, no uneven borders or different colors. I went back to the same doctor and insisted it be removed. She declined and said it was fine…. I insisted again and told her about the itching and think it had even bled once. She said I probaby had shaven over it (it was by my knee cap). I told her that I wasn’t asking her to take it off, I was demanding. She removed it and called me two days later telling me it was melanoma, Stage II, .27 mm thickness..so still very shallow. I had a wide excision of the area and so far so good after numerous x-rays, PET scans and worry. Don’t take no for an answer. You know your body better than anybody. After my surgery, the doctor told me I probably saved my own life (I refused to see the original doctor)…I told him ”wasn’t that her job?”

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      megm · 2 months, 1 week ago

      Welcome to the melanoma community! Your story is so important and thank you for sharing. Your persistence and insistence are a good lesson for us all.

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      italialu · 2 months, 1 week ago

      Thank you for sharing this with us. I always say that trusting your gut instincts is important. I was told the same thing with my choroidal melanoma….”oh, it is nothing and don’t worry about it” but I found out 1 1/2 years later that I too had cancer so be persistent.

      Welcome!!!

  • italialu posted on the forum topic How do you calm your "scanxiety"? in the group Melanoma:   2 months, 2 weeks ago · View

    Love your spirit Tammy!! That’s the right attitude to have.

  • italialu started the forum topic Choroidal Melanoma (Eye Cancer) Support in the group Melanoma:   2 months, 2 weeks ago · View

    Choroidal Eye Melanoma affects approximately one in 4 million. It is considered a rare cancer and differs from skin cancer, however, it too has the possiblity to metasticize. It is rare for it to metasticize. There are various treatments for cancer of the choroid. Since it is such a rare cancer, a posting topic is [...]

  • megm posted on the forum topic How do you calm your "scanxiety"? in the group Melanoma:   2 months, 2 weeks ago · View

    That is great advice– thanks!!

  • italialu joined the group Melanoma   2 months, 2 weeks ago · View

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      megm · 2 months, 2 weeks ago

      Welcome to the melanoma community! I noticed on your profile that you had choroidal melanoma– how were you diagnosed? I have heard that there are not many symptoms from this type of melanoma.

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        italialu · 2 months, 2 weeks ago

        Thank you! Persistence is what mattered in my case. It is very hard to diagnose since many doctors don’t have the right equipment to find out if it is a melanoma or not. Starts out with a tumor called a nevis and that can remain untouched for years or perhaps never. I was having vision disturbance after having had open-heart surgery and I knew something was not right but no one was able to figure out it was a melanoma until I went to a choroidal oncologist and he performed tests that told the story wasn’t what it appeared to be. It is a scary cancer.

  • tammyd joined the group Melanoma   2 months, 3 weeks ago · View

  • tammyd posted on the forum topic How do you calm your "scanxiety"? in the group Melanoma:   2 months, 3 weeks ago · View

    Although it helps to listen to relaxing music, I walk into my appointments with my mind set on a “bring it on” attitude. It moves my train of thought into a positive action mode. After all, should the results come back negative, you’re going to take on a fighting attitude and do all that you [...]

  • charles posted on the forum topic Experience with "ipi" in the group Melanoma:   3 months ago · View

    “The American Society of Clinical Oncology is in Chicago this week and new data on the management of cancer is being released to thousands of Doctors in attendence; there is some useful information about the use of Ipilimumab in Melanoma http://news.cancerconnect.com/ipilimumab-improves-outcomes-in-advanced-melanoma-2/”;

  • charles posted on the forum topic Stage IV Melanoma Succes Stories in the group Melanoma:   3 months, 1 week ago · View

    I think seeing someone who specializes in the cancer a person has is very important; especially when the caner is rare or more advanced

  • megm posted on the forum topic Stage IV Melanoma Succes Stories in the group Melanoma:   3 months, 3 weeks ago · View

    Thanks for joining our discussion and I appreciate your input. I am sorry that IL-2 was not successful in your mother’s case– I know it is a tough treatment that has success in some patients.

  • boogerann posted on the forum topic Stage IV Melanoma Succes Stories in the group Melanoma:   3 months, 3 weeks ago · View

    My mother had melanoma that went to her lungs and the doctors tryed trial il-2, and unfortunately it did not work, but if you are looking for treatment, i heard there is a trial called plx it is being done at sloan, my advise is to only go to a melanoma specialist once diagnosed with [...]

  • megm posted on the forum topic Good resources for latest melanoma news? in the group Melanoma:   3 months, 4 weeks ago · View

    Another great resource is to sign up for google news alerts– you can request daily, weekly, etc. updates and specify “Melanoma” or whatever topic you are interested in. News from the link above is included in this feed.

  • corey started the forum topic Good resources for latest melanoma news? in the group Melanoma:   3 months, 4 weeks ago · View

  • corey joined the group Melanoma   3 months, 4 weeks ago · View

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