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Newly diagnosed meloanoma of the scalp.
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Newly diagnosed meloanoma of the scalp.

› Forums › General Melanoma Community › Newly diagnosed meloanoma of the scalp.

  • Post
    • March 16, 2017 at 2:56 am
    TexMelanomex
    Participant

      Hey Everyone, I've been reading in here for weeks and finally decided to stop lurking and participate. I was diagnosed in late January with melanoma on my scalp. I'm 43 and have been healthy (military) my whole life so when the dermatology office called with the news I was floored. Thus far I have not had any treatment because I spent some time researching and decided to go to MD Anderson rather than have a local oncologist tackle this. I have been to MD Anderson once to meet with my oncologist and have had CTs of the chest, abdomen, and pelvis (all clear) and will have the wide exicision and SNB next week. While it was a temporary relief to get the CT results, waiting on procedures and answers is rough. I get the impression through these message boards that I better get used to waiting and watching and waiting some more.

      My initial biopsy indicated that the tumor was 2.2mm deep, Clarks level 4, has a mitotic rate of 12, no satellitosis, no perineural invasion, and "non-brisk" tumor invading lymphoocytes. I have read what all of that means statistically and I have decided I don't care about the statistics. I feel like this is my fight and while numbers are important, my approach to this is more important.

      I really appreciate all of the stories and insights I have read on here. I feel very confident in my treatment team at MD Anderson and I feel I am ready for whatever fight I have ahead of me (but this might be easier to say up front). This diagnosis, in its short time, has already taught me a lot, but most improtantly: Nothing is certain. Be nicer. Love your family and friends like there will be no tomorrow. Slow down. Breathe. My faith matters more than I realized. People can and will inspire you if you let them. Breathe some more. Being concerned is normal, feeling sorry for myself is a waste of my time. Sunrises have a new flavor and serve as a reminder that sunscreen is my new best friend.

      Tex

       

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    • Replies
        • March 16, 2017 at 5:07 am
        UBContributor
        Participant

          Thank you for sharing your story. The last para is so true, good approach, amen. 

          • March 16, 2017 at 9:38 am
          Momofjake
          Participant

            The surgery won't be easy. Your approach is everything:) You will keep learning. Stay calm. You can do way harder things than you thought. If needed, go with immune therapies. 

            9/12/14 my 17 yr old son was diagnosed w melanoma on his scalp. 

            Prayers,

            Kerri–momofjake

            • March 16, 2017 at 11:23 am
            stars
            Participant

              Hi

              I love your post – I'm sorry that you have to join the club, but I love your style. Not many of us acknowledge the gift of melanoma – the realisation that life is precious and sunrises matter. .Keep on keeping on and let us know how you go. I think MD Anderson sounds like a smart move. With your attitude, you'll be right on top of things. Good luck, pilgrim! You'll be in my thoughts!

                • March 16, 2017 at 8:52 pm
                TexMelanomex
                Participant

                  Thank you! I am also sorry I had to join the club…but I am finding there are some really great and inspiring people in the club! 

                • March 16, 2017 at 2:36 pm
                Gene_S
                Participant

                  Hello Tex,

                  Sorry you have had to join this board but it is a great place as their is much support here.

                  My husband also started with melanoma on the scalp but his was 10.5 mm.  His first surgery after the biopsy was the WLE (10.5 cm) and is SNB was negative, he also had to have s skin graft to cover the large area and they even cinched the area in before doing the skin graft of he started at Stage III.  His pet scan was clear also.  After several more surgeries he became Stage IV in Oct. 2010 with an unresectable tumor in the C1 C2 area of the spine and several in the lungs and liver.  He started a clinical trial in Mar. 2011 and became NED in July 2011 and has remained that way for the last 4 years and 9 months.

                   If you would like to read more about his journey check out his profile.  The only other suggestion I might give you since you are seeing a great group at MD Anderson is to keep a file of your own with copies of path reports, scans, surgeries and any tests you have done (blood etc.)

                  Judy (loving wife of Gene Stage IV and now NED for almost 5 years)

                  Clinical Trial was of IPI (Yervoy) 10 mg/kg and GM-CSF

                    • March 16, 2017 at 8:55 pm
                    TexMelanomex
                    Participant

                      Thank you Judy, and thank you for the advice regarding medical records. Fortunately, the Army trained me over the years to also maintain my own copy of records and I will do the same with this process. Your husband's story is amazing and to be NED for coming up on 5 years gets me fired up (inspired!).

                    • March 16, 2017 at 3:25 pm
                    TexMelanomex
                    Participant

                      Thank you all for responding and for your words! What a great place this is when you post something and wake up the next day and find lots of people who cared enough to respond. As I'm sure many or most you do, I find writing about what's going on as very therapeutic. I plan to chronicle this journey and maybe this is the right place to do it. Thank you for your responses, insights, advice and caring!

                      Tex

                      • March 16, 2017 at 3:34 pm
                      Bradley75
                      Participant

                        Your last paragraph is an awesome message.  It took me years to realize what you have already figured out.  Along those lines, I am trying to adopt the philosophy that cancer is winning if I don't live by what you have learned.  Enjoy the good days without concern for the bad ones.  They will happen regardless.  Trying to have joy amidst the battle isn't easy, but it is so important.

                        Thanks you for sharing this. 

                        Brad

                          • March 16, 2017 at 3:43 pm
                          TexMelanomex
                          Participant

                            Thanks Brad…coincidentally, Brad is my name too!

                          • March 16, 2017 at 6:33 pm
                          MichelleRHG
                          Participant
                            I had surgery in January at MDAnderson and had excellent care from start to finish . The nurses on the surgical wing where I was for a few nights were top notch. You are in good hands !
                              • March 16, 2017 at 8:25 pm
                              TexMelanomex
                              Participant

                                Thanks Michelle! I felt really comfortable there right out of the gate. I have Dr. Ross (Chief of the Melanoma clinic) so that makes me extra comfortable with my care there. I read over some of your posts, how are you doing on the ipi?

                                 

                                • March 16, 2017 at 9:44 pm
                                MichelleRHG
                                Participant
                                  Just had my 2nd dose today . So far, so good. Not my first choice of drug but its all I qualified for at stage 3B. Who is your surgeon ?
                                  • March 16, 2017 at 9:54 pm
                                  TexMelanomex
                                  Participant

                                    I believe Merrick Ross is doing the surgery.

                                     

                                    • March 16, 2017 at 11:45 pm
                                    MichelleRHG
                                    Participant
                                      Ah. I didn’t know if he was a medical or surgical oncologist . Best of luck!
                                      • March 17, 2017 at 1:23 am
                                      TexMelanomex
                                      Participant

                                        Thank you!

                                      • March 17, 2017 at 12:24 am
                                      jennunicorn
                                      Participant

                                        Wanted to wish you all the best in this new journey you've been forced on. It is not easy to approach something so unknown and scary with a positive attitude, but I can definitely atest to it being a huge help in getting through a lot of uncertain moments. Keep up the great mental work, enjoy this world with your new view, it's a pretty spectacular place. 

                                          • March 17, 2017 at 1:24 am
                                          TexMelanomex
                                          Participant

                                            Thank you Jenn! I finished reading your timeline, wow you have been through a lot and a testament to strength! Thanks for the encouragement, and although I'm a "newbie" here I want to say the same to you. Keep kicking butt!!!

                                          • March 17, 2017 at 4:05 am
                                          Swanee
                                          Participant

                                            Hi Tex!  

                                            We all hate greeting a new comer to this group but at the same time, we all love reaching out with support and assurance that you have found a great place to be.

                                            I love your post and I can see from your words that you have already embraced your melanoma diagnosis with courage and positivity that will take you far in this journey and that is the key to living with this enemy.

                                            My life is different now, I've been given a notice.  I feel, see, hear, love and experience life differently and it has been in so many ways a gift., I'm living completely different now.  While there is a lot of struggle, pain, highs and lows, my life is good, better than it's ever been.  Every day is a gift and I don't waste a moment, even if I'm feeling low, I let it be, feel the pain and move on.  In the end, today is the only day any of us have….Live Big! 

                                            Yesterday is history, today is a gift, tomorrow is a mystery!

                                            Sendng positive thoughts and encouraging support to you in your melanoma journey!

                                            Swanee

                                            • March 17, 2017 at 4:22 pm
                                            KimW
                                            Participant

                                              Hi Tex! 

                                              My husband was also diagnosed with scalp melanoma in November of 2014. He also had another primary located on his back. Merrick Ross did his excision surgery and he is an amazing man. He is so very caring and after an 8 hour surgery (because of 2 primaries and several locations of sentinel lymph node removals) he still came out to the waiting room and wanted to meet our entire family and took the time to discuss the surgery. This was after 8pm when I'm sure he was exhausted and ready to go home. I just cannot say enough about him. If he does your surgery, you are in the best hands with Dr. Ross! 

                                              His recommendation, along with the team of doctors, was to watch and wait. My husband had 4 tiny intransit spots show up on his scalp after the excision, all in 2015. The last one was in September so he has been NED since then. (18 mos) While "watching and waiting" makes me a nervous wreck, I have so much faith and respect for Dr. Ross and Dr. Amaria (oncologist) and know they are monitoring him as closely as possible. My husband is stage 3b. 

                                              i just wanted to say hello and offer some sort of relief to you for choosing Dr. Ross. Keep us posted and if you see him, tell him Marshall and Kim said hello. We go back in May for scans. Good luck and try to relax. I know, not easy! 

                                              Kim

                                                • March 17, 2017 at 4:44 pm
                                                TexMelanomex
                                                Participant

                                                  Hi Kim! Thank you! I love hearing success stories and particulary from the same doc! I met with him and his team earlier this month and was thoroughly impressed (also impressed with MD Anderson as a whole). That's awesome that your husband has been NED for 18 months…I'm hoping to report the same results later down the road. Stories like yours give me even more optomism and I love to hear them!!

                                                  I will post after the surgery and once I get back home even though I won't have the SNB results (as you know they take a little while). Ready to get this garbage out of my body and move to the next steps whatever they are. I'm doing my best to relax and so far (I think) I'm doing an ok job with it. After the initial shock and awe of the diagnosis I have made it my mission to make the most of every day and slow down to enjoy things that I didn't take the time to in the past. Thank you again for the information and insight!

                                                   

                                                  Best,

                                                  "Tex"

                                                  • March 17, 2017 at 6:36 pm
                                                  KimW
                                                  Participant

                                                    I felt, while reading your post, that your situation was just like my husband's.  I don't see a whole lot of scalp melanoma posts but I know that Judy, (loving wife of Gene) who posted above made me feel better when this mess hit us. If you need anything or have any questions regarding the WLE, please feel free to email me at [email protected]. I know it's tough to face but Ross is SO great and will take good care of you. 

                                                    Take care, Kim

                                                    • March 20, 2017 at 1:45 am
                                                    TexMelanomex
                                                    Participant

                                                      Thank you Kim! I head down there tomorrow night and surgery on Weds morning. I will do my best to remember to tell him you and Marshall say hi!

                                                       

                                                       

                                                      • March 21, 2017 at 8:29 pm
                                                      TexMelanomex
                                                      Participant

                                                        Hi Kim,

                                                        I met with Dr. Ross today for pre-op and told him that you and Marshall said hi. He got a huge smile and said it had been a while, which he also smiled about.

                                                        B

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