The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Just wanted to introduce myself

Forums Cutaneous Melanoma Community Just wanted to introduce myself

  • Post
    BillB
    Participant

      Hi to everyone and thanks to all for posting information regarding their lives and treatments, it has been very helpful to me. I entered the melanoma community on 11/1/2016. I had a blood blister like growth removed from my right temple on Oct 26, 2016 and met with extreme shock on 11/1 when I was notified it was a nodular melanoma ( 5 mm, ulcerated, neural and vascular invasion, mitotic 15). Immediately set up with local oncologist and completed PET scan on 11/9/2016. I started researching melanoma immediately ( not hard to do when you’re not sleeping) and identified that one of the best cancer centers was in NYC and only four and half hours away. To help my decision to be treated there easier was the fact I have two sons that work in Manhattan and one of them lives in manahatten and the other just North of the city.  I completed surgical, oncologist, and plastic surgeon consults to complete the WLE  before the oncologist in Syracuse could schedule my PET scan. The plastic surgeon who completed the original surgery did obtain clear margins, just not wide enough. The PET scan on 11/9 came out clean, no activity identified and I also notified the oncologist in Syracuse that I had decided to be treated at MSK.  

      November 17 WLE and skin graft. All went well and I wore the bolster well. November 28th met with surgeon and unfortunately they identified in situ melanoma along the 6-12 margin and we needed to go back and do it again. Surgery scheduled for 12/8, and if pathology results are clear the graft would be completed on 12/12. Notified of clear pathology on 12/9, graft completed 12/12 and I wore the bolster well again. Interesting to go home with a hole in your head for 3.5 days. Slept in a recliner for 38 days.

      February 2017 CT scans completed, nodes identified on thyroid, ultrasound, then ultrasound with fine needle biopsy, no melanoma.

      Early April I felt a small node above my jaw. Future trips to MSK, CT, MRI, ultrasound, ultrasound biopsy, melanoma has surfaced again. May 6, parotid gland and right lymphendectomy completed. Parotid gland and 35 lymph nodes removed, 3 lymph nodes on the parotid gland (matted) and one node in the neck came back positive. Oncologist recommended radiation to head and neck to try and prevent future head and neck issues. 

      June 6th to  July 6th 48 gray in 20 installments. Made it through the radiation pretty well. Standard expected side effects. Prefer not to do that one again.

      CT scans the end of July identified 5 lesion on right lung. CT guided fine needle biopsy completed on 8/9, results 8/10 confirmed what was already expected. Received first Keytruda treatment on 8/10, right after receiving pathology results. I’m BRAF +, needed to add that now.

      My oncologist wanted CT scans after 8 weeks, prior to my 4th treatment and we received some highly unexpected but fantastic news that all of the lesions on my lung had resolved and none were visible on the CT, and the two lymph nodes under my jaw bone that were enlarged had also resolved back to normal. Just hope for me and everyone else that it continues to work. I have lots of questions but I’ll save them for another day.

      Leaving for MSK tomorrow morning to complete infusion #7 on 12/12.

      My side effects so far have been highly sensitive skin under my arms, arm pits, and different parts of my body. I had two very small rashes that didn’t itch but lasted over a month each. Knees, hips, shoulders and hands ache but ibuprofen helps a lot. Fatigue comes and goes and had some difficulty determining where the fatigue from radiation stopped and the Keytruda fatigue started. Most significant side effect is my right jaw bone. The combination of parotid/ lymphendectomy, Head and neck radiation and now Keytruda prevents me from opening my jaw well. A lot of the side effects diminished significantly after infusion 6, especially the joint issues except for the jaw.

      Overall it was a long year, with 6 procedures (7 if you include knee surgery on 9/22/16), radiation and now immunotherapy. I have finally been able to begin doing all the things I love to do. I have had great support from my family and friends. Now dealing with the issue of when to stop Keytruda, the balance between current mental need to continue and potential permanent physical issues that could occur. Next CT scans will be 1/25/18. The oncologist I’m seeing right now while my oncologist is on leave likes to complete the scans somewhere between infusions 8-10. Three weeks later than my normal schedule. He would also recommend going off after 6 months, I’ll evaluate that after a couple more good scans as long as blood work remains good.

      Well, I went way longer than probably needed but if anyone has questions please ask. The staff at MSK has been fantastic. I have a lot of scars, but my surgeons work was fantastic. An additional shout out to Celeste, I visit you site frequently and appreciate all of the information regarding melanoma. I research it all. All of the sewing blogs is just frosting on top.

      Thanks tomeveryone for taking the time to help, happy holidays and good luck to everyone. Please forgive typos.

      Bill

       

    Viewing 6 reply threads
    • Replies
        Bubbles
        Participant

          Hey Bill!!!

          So glad things are finally looking up on your road to Hades and back again!!  That is wonderful news!!  Thanks for the shoutout…but it takes a village.  There will be an upcoming sewing fiasco post (Yes…I report the good, the bad and the ugly…and this will certainly attest to two of those descriptors!!!) regarding a robes for Christmas disaster!!!  While it will give anyone pause considering requesting a robe from me….it should be good for a laugh!!!  Have a great holiday season with family and friends!  You deserve it!! celeste

          BrianP
          Participant

            Welcome Bill.  Thanks for sharing.  That's one hell of a year Bill!  Hoping 2018 provides a smoother ride for you!  Congrats on the great response.

            sweetaugust
            Participant

              Hi Bill

              Congratulations to you!  I love hearing the successes of Keytruda.  I was one of the first humans to get it when it was a trial back in 2012 at Dana Farber in Boston.  Back when they really didn't know as much as they do now. 

              I started Keytruda on 10/31/12 and was on it until Feb of this year.  It took my nodes 3 months to respond and all return to normal size.  But 6 months for the biopsied node to blow up and die.  So for me, everything was all good and nothing active since 2013.  My joint pain all subsided after I came off the drug.  And I am still doing great!

              All my best, Laurie

              TexMelanomex
              Participant

                Hi Bill!

                An eventful year indeed! My year had some of the same events but nearly as many, and I was a fellow bolster wearer (top of the head) although I'm not sure I wore mine "well". I'm taking my 4th Keytruda infusion this week and like others on here…I love to hear good news! Please keep us posted on how the course of treatment goes with the Keytruda and if you stop after 6 months. Wishing you all the best and a very Merry Christmas!

                 

                  BillB
                  Participant

                    Hi Tex, as of right now I plan to continue treatment for at least a year. I appreciate the thoughts of our experts regarding how the therapy works and their thoughts on length of treatment ( probably even agree)  but there really haven’t been any trials to support a shorter treatment and I would like to ensure we get it all. My thoughts might change but six months won’t be up until 2/10/18 so there is still time. All of my lab work has been well within spec. including labs completed yesterday for today’s treatment.

                    Bill

                    BillB
                    Participant

                      Hi Tex, as of right now I plan to continue treatment for at least a year. I appreciate the thoughts of our experts regarding how the therapy works and their thoughts on length of treatment ( probably even agree)  but there really haven’t been any trials to support a shorter treatment and I would like to ensure we get it all. My thoughts might change but six months won’t be up until 2/10/18 so there is still time. All of my lab work has been well within spec. including labs completed yesterday for today’s treatment.

                      Bill

                    CancerSpouse
                    Participant

                      Wishing you a better year in 2018! Welcome aboard, and please keep us posted. ~ Carol

                        BillB
                        Participant

                          Thank you everyone for the warm welcome. I will do my best to actively participate and provide support along  with the rest of the village. Update, I completed Keytruda infusion #7 this morning and then drove 4.5 hours back home to Syracuse. Will provide update if I have side effects.

                           

                        J.bun
                        Participant

                          Welcome Bill! I also had quite the last year and still fighting. Am currently on Keytruda as well – had 9th infusion this past Friday. My doctor did imaging after 8, and is still intent that if things stabilize/melanoma goes away and stays away  – will be in it for 12 months. 

                          Best wishes to you. 

                          stacijane
                          Participant
                            Hi Bill! We’re “neighbors”, I live in Cortland 🙂

                            My Mel journey also began as a nodular melanoma, mine on my back in 2016. After a second appearance of the beast, and a positive lymph node I began keytruda and I had my 3rd treatment last week, so far no side effects to speak of! My oncologist has mentioned 18 months for treatment, and then we go into somewhat unknown territory and we will have to decide at that time whether to continue or stop. He will be scheduling me for scans here in the next week or 2.

                            Wishing you continued good results!

                              BillB
                              Participant

                                Hi Stacijane, drove right past Cortland today on my way home from MSK. Good luck with your scans!

                          Viewing 6 reply threads
                          • You must be logged in to reply to this topic.
                          About the MRF Patient Forum

                          The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                          The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                          Popular Topics