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Just got diagnosed with Melanoma on my rt thumb nail bed
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Just got diagnosed with Melanoma on my rt thumb nail bed

› Forums › General Melanoma Community › Just got diagnosed with Melanoma on my rt thumb nail bed

  • Post
    • May 29, 2015 at 3:32 am
    jvictoria
    Participant

      Hi all,

      Wanted to see if there was some insight on where to go, best place to get treated, what to expect. I'm playing the waiting game with my doctors to see what next steps might be.

      I had an initial biopsy of the affected area July 2014… biopsy can back negative for cancer, positive for Lichen Planus. May 2015, same area was biopsied again… Biopsy came back melanoma positive… the unusual part of the melanoma is that it doesn't have any dark spots (aka colorless)

      Was hoping for some insight as to where it would be best to treat this type of melanoma… I have a few options…

      – Univeristy of Miami (Florida) Sylvester Cancer Clinic

      – Northwestern University Chicago

      – Moffitt Clinic Tampa, FL

      Also, any general advice would be very helpful.

      Thanks!

    Viewing 8 reply threads
    • Replies
        • May 29, 2015 at 4:05 am
        Janner
        Participant

          Moffitt!  Definitely a place that specializes in melanoma.  Melanoma without color is called amelanotic.  It happens to a smaller percentage of the melanoma population but it certainly isn't unheard of.

          • May 29, 2015 at 4:05 am
          Janner
          Participant

            Moffitt!  Definitely a place that specializes in melanoma.  Melanoma without color is called amelanotic.  It happens to a smaller percentage of the melanoma population but it certainly isn't unheard of.

            • May 29, 2015 at 4:05 am
            Janner
            Participant

              Moffitt!  Definitely a place that specializes in melanoma.  Melanoma without color is called amelanotic.  It happens to a smaller percentage of the melanoma population but it certainly isn't unheard of.

              • May 29, 2015 at 11:41 am
              arthurjedi007
              Participant

                Like janner said definitely mofffitt. Dr weber is the best melanoma doc there but I'm sure there are others as well.

                Artie

                • May 29, 2015 at 11:41 am
                arthurjedi007
                Participant

                  Like janner said definitely mofffitt. Dr weber is the best melanoma doc there but I'm sure there are others as well.

                  Artie

                  • May 29, 2015 at 11:41 am
                  arthurjedi007
                  Participant

                    Like janner said definitely mofffitt. Dr weber is the best melanoma doc there but I'm sure there are others as well.

                    Artie

                    • May 29, 2015 at 1:49 pm
                    A
                    Participant

                      I am very sorry about your diagnosis!

                      Could you please describe how your melanoma/affected nail area looked like? Since it was colorless, I believe it is important to be aware of the signs. Thank you.

                        • May 29, 2015 at 9:31 pm
                        jvictoria
                        Participant

                          Thanks everyone for the feedback.

                          The whole thing started as a ridge/line down the center of my nail. I paid no notice to it since I have other ridges that appear to be normal. One day the nail split in two and began to fall off the finger… I thought it was odd but, I assumed that the nail would just grow back so again I did not seek medical attention. Time passed and the nail did not grow back normally and at the bottom where the nail bed was what looked like a small patch or reddened/inflamed skin. At that time, I sought out medical attention and the first biopsy was performed.

                          • May 29, 2015 at 9:43 pm
                          jvictoria
                          Participant

                            Just got an update from the hospital that did the original Biopsy in July 2014… I had informed them of the current malenoma findings from the current biopsy; they went in and did a deeper study of the original biopsy and found malenoma… frustrating to say the least.

                            • May 29, 2015 at 9:43 pm
                            jvictoria
                            Participant

                              Just got an update from the hospital that did the original Biopsy in July 2014… I had informed them of the current malenoma findings from the current biopsy; they went in and did a deeper study of the original biopsy and found malenoma… frustrating to say the least.

                              • May 29, 2015 at 9:43 pm
                              jvictoria
                              Participant

                                Just got an update from the hospital that did the original Biopsy in July 2014… I had informed them of the current malenoma findings from the current biopsy; they went in and did a deeper study of the original biopsy and found malenoma… frustrating to say the least.

                                • May 30, 2015 at 3:51 am
                                Marianne quinn
                                Participant

                                  Juan- sorry about your diagnosis. Melanoma under the thumbnail is very rare.my husband is NED after yervoy and surgery. Please contact me through the website or read my posts for more info. I hope to hear from you. Marianne . He had melanoma on his left thumb nail bed .

                                  • May 30, 2015 at 3:51 am
                                  Marianne quinn
                                  Participant

                                    Juan- sorry about your diagnosis. Melanoma under the thumbnail is very rare.my husband is NED after yervoy and surgery. Please contact me through the website or read my posts for more info. I hope to hear from you. Marianne . He had melanoma on his left thumb nail bed .

                                    • May 30, 2015 at 4:11 pm
                                    Patti
                                    Participant

                                      Juan I too have this same type of melanoma – under my left thumb nail bed – it sounds very similar to your story with the split nail and the anil falling off.  I had to have half of my thumb amputated in Dec 2014.  The melanoma had not apread to my lymph nodes and the pet scan was clear so it is just a watch and wait for now!  I hope you find a great surgeon and oncologist.  Patti

                                      • May 30, 2015 at 4:11 pm
                                      Patti
                                      Participant

                                        Juan I too have this same type of melanoma – under my left thumb nail bed – it sounds very similar to your story with the split nail and the anil falling off.  I had to have half of my thumb amputated in Dec 2014.  The melanoma had not apread to my lymph nodes and the pet scan was clear so it is just a watch and wait for now!  I hope you find a great surgeon and oncologist.  Patti

                                        • May 30, 2015 at 4:11 pm
                                        Patti
                                        Participant

                                          Juan I too have this same type of melanoma – under my left thumb nail bed – it sounds very similar to your story with the split nail and the anil falling off.  I had to have half of my thumb amputated in Dec 2014.  The melanoma had not apread to my lymph nodes and the pet scan was clear so it is just a watch and wait for now!  I hope you find a great surgeon and oncologist.  Patti

                                          • May 30, 2015 at 3:51 am
                                          Marianne quinn
                                          Participant

                                            Juan- sorry about your diagnosis. Melanoma under the thumbnail is very rare.my husband is NED after yervoy and surgery. Please contact me through the website or read my posts for more info. I hope to hear from you. Marianne . He had melanoma on his left thumb nail bed .

                                            • June 19, 2015 at 1:59 am
                                            jvictoria
                                            Participant

                                              Surgery tomorrow… thumb amputation and centinal node removal at Moffitt. Had a small side issue where I got a blood clot in my lower left leg complicating issues a bit.

                                              Juan

                                              • June 19, 2015 at 1:59 am
                                              jvictoria
                                              Participant

                                                Surgery tomorrow… thumb amputation and centinal node removal at Moffitt. Had a small side issue where I got a blood clot in my lower left leg complicating issues a bit.

                                                Juan

                                                • June 19, 2015 at 1:59 am
                                                jvictoria
                                                Participant

                                                  Surgery tomorrow… thumb amputation and centinal node removal at Moffitt. Had a small side issue where I got a blood clot in my lower left leg complicating issues a bit.

                                                  Juan

                                                  • July 6, 2015 at 7:31 pm
                                                  jvictoria
                                                  Participant

                                                    Results are back… Amputation went as well as can be expected. Sentinel node came back 2 of 10 nodes removed had cancer. Moffit is recommending full nodal removal in left arm and potentially go on a clinical trial. All your thoughts on this are welcome.

                                                    I have been getting some conflicts on this… some people are saying that the full node removal sholdn't be done and I should go directly on a trial… then I hear yo can't go on a trial unless you have all your nodes removed.

                                                    Juan

                                                    • July 5, 2016 at 3:56 am
                                                    tekpc81
                                                    Participant

                                                      Hi Juan, 

                                                      I am just wondering if there are any updates on your condition. I happened to come to this site during some research into the condition. I hope you are doing better and looking forward to hearing from you on the outcome. thank you.

                                                      • July 5, 2016 at 3:56 am
                                                      tekpc81
                                                      Participant

                                                        Hi Juan, 

                                                        I am just wondering if there are any updates on your condition. I happened to come to this site during some research into the condition. I hope you are doing better and looking forward to hearing from you on the outcome. thank you.

                                                        • July 5, 2016 at 3:56 am
                                                        tekpc81
                                                        Participant

                                                          Hi Juan, 

                                                          I am just wondering if there are any updates on your condition. I happened to come to this site during some research into the condition. I hope you are doing better and looking forward to hearing from you on the outcome. thank you.

                                                          • July 6, 2015 at 7:31 pm
                                                          jvictoria
                                                          Participant

                                                            Results are back… Amputation went as well as can be expected. Sentinel node came back 2 of 10 nodes removed had cancer. Moffit is recommending full nodal removal in left arm and potentially go on a clinical trial. All your thoughts on this are welcome.

                                                            I have been getting some conflicts on this… some people are saying that the full node removal sholdn't be done and I should go directly on a trial… then I hear yo can't go on a trial unless you have all your nodes removed.

                                                            Juan

                                                            • July 6, 2015 at 7:31 pm
                                                            jvictoria
                                                            Participant

                                                              Results are back… Amputation went as well as can be expected. Sentinel node came back 2 of 10 nodes removed had cancer. Moffit is recommending full nodal removal in left arm and potentially go on a clinical trial. All your thoughts on this are welcome.

                                                              I have been getting some conflicts on this… some people are saying that the full node removal sholdn't be done and I should go directly on a trial… then I hear yo can't go on a trial unless you have all your nodes removed.

                                                              Juan

                                                              • May 29, 2015 at 9:31 pm
                                                              jvictoria
                                                              Participant

                                                                Thanks everyone for the feedback.

                                                                The whole thing started as a ridge/line down the center of my nail. I paid no notice to it since I have other ridges that appear to be normal. One day the nail split in two and began to fall off the finger… I thought it was odd but, I assumed that the nail would just grow back so again I did not seek medical attention. Time passed and the nail did not grow back normally and at the bottom where the nail bed was what looked like a small patch or reddened/inflamed skin. At that time, I sought out medical attention and the first biopsy was performed.

                                                                • May 29, 2015 at 9:31 pm
                                                                jvictoria
                                                                Participant

                                                                  Thanks everyone for the feedback.

                                                                  The whole thing started as a ridge/line down the center of my nail. I paid no notice to it since I have other ridges that appear to be normal. One day the nail split in two and began to fall off the finger… I thought it was odd but, I assumed that the nail would just grow back so again I did not seek medical attention. Time passed and the nail did not grow back normally and at the bottom where the nail bed was what looked like a small patch or reddened/inflamed skin. At that time, I sought out medical attention and the first biopsy was performed.

                                                                • May 29, 2015 at 1:49 pm
                                                                A
                                                                Participant

                                                                  I am very sorry about your diagnosis!

                                                                  Could you please describe how your melanoma/affected nail area looked like? Since it was colorless, I believe it is important to be aware of the signs. Thank you.

                                                                  • May 29, 2015 at 1:49 pm
                                                                  A
                                                                  Participant

                                                                    I am very sorry about your diagnosis!

                                                                    Could you please describe how your melanoma/affected nail area looked like? Since it was colorless, I believe it is important to be aware of the signs. Thank you.

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