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PET/CT scan results
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PET/CT scan results

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  • Post
    • March 20, 2012 at 1:15 pm
    Wilfred
    Participant

      While spreading sunscreen (SPF 50) on my left bicep in February – in Jamaica at the Jamaica Inn where I thoroughly enjoyed myself – I notice a lump that had not been there before. I showed it to my wife and to my sister-in-law who is a nurse. They thought, as did I, that it was something to report to my doctor as soon as I got back to the US. WE got back to MD on Sunday evening, Dr D saw me at 3:00pm on Monday. The lump is about 1 inch in diameter and on the inside of my left arm. Dr D examined me and took a cell sample by aspiration.

      While spreading sunscreen (SPF 50) on my left bicep in February – in Jamaica at the Jamaica Inn where I thoroughly enjoyed myself – I notice a lump that had not been there before. I showed it to my wife and to my sister-in-law who is a nurse. They thought, as did I, that it was something to report to my doctor as soon as I got back to the US. WE got back to MD on Sunday evening, Dr D saw me at 3:00pm on Monday. The lump is about 1 inch in diameter and on the inside of my left arm. Dr D examined me and took a cell sample by aspiration. He gave me an order for a PET/CT and asked me to get it done ASAP. On Thursday of that week, 3/8/12, I had the PET/CT done at Capital Health Hopewell Hospital.The next day Dr D called to say the results were not good and that he wanted me to see Dr Scharfman at Hopkins.  I then went to Kentucky to spend a week as chaperone to some Portsmouth Abbey School students working on an Appalachia Service Project. Yesterday I picked up some CDs of the scan from the hospital to take with me to Dr Scharfman's on Thursday. A copy of the written report was in the envelope.

      The report is 4 pages; good news can be reported in a sentence. There is a lot of terminology in the report that I do not understand. While reading it again last night,I used Google search to help me with various terms. For example: an SUV of 9.4 in my left bicep, intense uptake in the region of the pancreatic tail, focal abnormal uptake right hiliar region with suspected nodule of 7mm and an SUV of 15, intense focal uptakes within the left upper abdomen and mid abdomen, uptakes in my legs, lungs, colon. There are mentions of other uptakes in other places as well. The part that really bothers me is the in the Impression section: "Multiple focal areas of increased metabolic activity consistent with metastatic melanoma."

      So…finally… I get to my point. What are the questions that I should ask Dr Scharfman on Thursday afternoon? This is the eighth time the M word has been used next to my name. I am positive and upbeat, worked my *** off down in Kentucky and told funny stories to the kids. My wife and children are very supportive and I am not afraid of the future. But I do want to understand what all this means before I meet with Dr Scharfman. Thanks, Wilfred

    Viewing 8 reply threads
    • Replies
        • March 20, 2012 at 2:33 pm
        Linny
        Participant

          I can't help you much with deciphering the report. But I have been a patient of Dr. Scharfman's for over a year and just wanted to share my first experience with him wtih you.

          First off, you're lucky to meet Dr. Scharfman before you meet the dermatologist in the Johns Hopkins melanoma clinic. Though the latter was cordial, his bedside manner left a lot to be desired.

          Dr. Scharfman is the complete opposite. I was very nervous (read: "basket case") for my appointment but that dissipated as soon as I met him. He's very low-key and has a calm and reassuring bedside manner.  He will examine you and explain your test results to you in a way that you will clearly understand them. We discussed treatment options at my appointment and again, everything was clearly explained. That's the nice part about seeing a doctor at a teaching hospital — they're used to educating people! I had questions for him but he'd already answered them. I actually left my appointment feeling better than when I first walked in. Scharfman is also one of the top melanoma specialists in the country, so you are in good hands.

          • March 20, 2012 at 2:33 pm
          Linny
          Participant

            I can't help you much with deciphering the report. But I have been a patient of Dr. Scharfman's for over a year and just wanted to share my first experience with him wtih you.

            First off, you're lucky to meet Dr. Scharfman before you meet the dermatologist in the Johns Hopkins melanoma clinic. Though the latter was cordial, his bedside manner left a lot to be desired.

            Dr. Scharfman is the complete opposite. I was very nervous (read: "basket case") for my appointment but that dissipated as soon as I met him. He's very low-key and has a calm and reassuring bedside manner.  He will examine you and explain your test results to you in a way that you will clearly understand them. We discussed treatment options at my appointment and again, everything was clearly explained. That's the nice part about seeing a doctor at a teaching hospital — they're used to educating people! I had questions for him but he'd already answered them. I actually left my appointment feeling better than when I first walked in. Scharfman is also one of the top melanoma specialists in the country, so you are in good hands.

            • March 20, 2012 at 2:33 pm
            Linny
            Participant

              I can't help you much with deciphering the report. But I have been a patient of Dr. Scharfman's for over a year and just wanted to share my first experience with him wtih you.

              First off, you're lucky to meet Dr. Scharfman before you meet the dermatologist in the Johns Hopkins melanoma clinic. Though the latter was cordial, his bedside manner left a lot to be desired.

              Dr. Scharfman is the complete opposite. I was very nervous (read: "basket case") for my appointment but that dissipated as soon as I met him. He's very low-key and has a calm and reassuring bedside manner.  He will examine you and explain your test results to you in a way that you will clearly understand them. We discussed treatment options at my appointment and again, everything was clearly explained. That's the nice part about seeing a doctor at a teaching hospital — they're used to educating people! I had questions for him but he'd already answered them. I actually left my appointment feeling better than when I first walked in. Scharfman is also one of the top melanoma specialists in the country, so you are in good hands.

              • March 20, 2012 at 2:38 pm
              Linny
              Participant
                  • March 20, 2012 at 3:25 pm
                  Wilfred
                  Participant

                    Thanks for your replies, Linny. I have heard good things about Dr Scharfman from a number if my medical friends. My wife and I live in NJ but we lived in MD until 2002. Most of our doctors are in Maryland including my dermatologist, Dr Ron Sweren who is a member of Hopkins Dermatology. I glad to hear that you are doing well and that your "scares" have not developed into something serious.

                    • March 20, 2012 at 3:25 pm
                    Wilfred
                    Participant

                      Thanks for your replies, Linny. I have heard good things about Dr Scharfman from a number if my medical friends. My wife and I live in NJ but we lived in MD until 2002. Most of our doctors are in Maryland including my dermatologist, Dr Ron Sweren who is a member of Hopkins Dermatology. I glad to hear that you are doing well and that your "scares" have not developed into something serious.

                      • March 20, 2012 at 3:25 pm
                      Wilfred
                      Participant

                        Thanks for your replies, Linny. I have heard good things about Dr Scharfman from a number if my medical friends. My wife and I live in NJ but we lived in MD until 2002. Most of our doctors are in Maryland including my dermatologist, Dr Ron Sweren who is a member of Hopkins Dermatology. I glad to hear that you are doing well and that your "scares" have not developed into something serious.

                        • March 21, 2012 at 11:57 am
                        Linny
                        Participant

                          I checked your profile to see where in NJ you live and I see you're not far from Phillie. If you find yourself wanting to get a second opinion, I recommend checking out the University of Pennsylvania's Melanoma Center — I think they refer to it as the "Pigmented Lesion Group". Dr. Lynn Schuchter is also supposed to be very good.

                          • March 21, 2012 at 11:57 am
                          Linny
                          Participant

                            I checked your profile to see where in NJ you live and I see you're not far from Phillie. If you find yourself wanting to get a second opinion, I recommend checking out the University of Pennsylvania's Melanoma Center — I think they refer to it as the "Pigmented Lesion Group". Dr. Lynn Schuchter is also supposed to be very good.

                            • March 21, 2012 at 11:57 am
                            Linny
                            Participant

                              I checked your profile to see where in NJ you live and I see you're not far from Phillie. If you find yourself wanting to get a second opinion, I recommend checking out the University of Pennsylvania's Melanoma Center — I think they refer to it as the "Pigmented Lesion Group". Dr. Lynn Schuchter is also supposed to be very good.

                            • March 20, 2012 at 2:38 pm
                            Linny
                            Participant
                              • March 20, 2012 at 2:38 pm
                              Linny
                              Participant
                                • March 22, 2012 at 2:17 am
                                gabsound
                                Participant

                                  Wilfred,

                                  I'm sure that you probably already know what that report means. It looks like now instead of local recurrences you now have had the melanoma spread to more distant sites. I recently received the same news.

                                  The SUV level is just a term used to help quantify how metabolically active those areas are. Cancer cells are rapidly dividing and therfore using up a lot more energy which is why they inject with the radioactive sugar solution. So, the higher the number, the more active those regions are.

                                  Your profile doesn't say if you have been tested for any of the mutations.

                                  Your biggest question for your Oncologist is what kind of systemic therapy are you going to get i.e. Yervoy (IPPI), or BRAF drug if you have that mutation, or specific drug if you have e.g. C-kit mutation. Also you may want to ask about TIL treatment at NIH, the Anti PD1 drug and of course clinical trials. These are just the ones that come to my mind-others may chime in

                                  So although this now for sure makes you stage 4, there are many on this board who are stage 4 and have been here for years. Hoping to be one myself.

                                  Best of luck to you and let us know what treatment your Dr offers.

                                  Julie in Las Vegas

                                  • March 22, 2012 at 2:17 am
                                  gabsound
                                  Participant

                                    Wilfred,

                                    I'm sure that you probably already know what that report means. It looks like now instead of local recurrences you now have had the melanoma spread to more distant sites. I recently received the same news.

                                    The SUV level is just a term used to help quantify how metabolically active those areas are. Cancer cells are rapidly dividing and therfore using up a lot more energy which is why they inject with the radioactive sugar solution. So, the higher the number, the more active those regions are.

                                    Your profile doesn't say if you have been tested for any of the mutations.

                                    Your biggest question for your Oncologist is what kind of systemic therapy are you going to get i.e. Yervoy (IPPI), or BRAF drug if you have that mutation, or specific drug if you have e.g. C-kit mutation. Also you may want to ask about TIL treatment at NIH, the Anti PD1 drug and of course clinical trials. These are just the ones that come to my mind-others may chime in

                                    So although this now for sure makes you stage 4, there are many on this board who are stage 4 and have been here for years. Hoping to be one myself.

                                    Best of luck to you and let us know what treatment your Dr offers.

                                    Julie in Las Vegas

                                    • March 22, 2012 at 2:17 am
                                    gabsound
                                    Participant

                                      Wilfred,

                                      I'm sure that you probably already know what that report means. It looks like now instead of local recurrences you now have had the melanoma spread to more distant sites. I recently received the same news.

                                      The SUV level is just a term used to help quantify how metabolically active those areas are. Cancer cells are rapidly dividing and therfore using up a lot more energy which is why they inject with the radioactive sugar solution. So, the higher the number, the more active those regions are.

                                      Your profile doesn't say if you have been tested for any of the mutations.

                                      Your biggest question for your Oncologist is what kind of systemic therapy are you going to get i.e. Yervoy (IPPI), or BRAF drug if you have that mutation, or specific drug if you have e.g. C-kit mutation. Also you may want to ask about TIL treatment at NIH, the Anti PD1 drug and of course clinical trials. These are just the ones that come to my mind-others may chime in

                                      So although this now for sure makes you stage 4, there are many on this board who are stage 4 and have been here for years. Hoping to be one myself.

                                      Best of luck to you and let us know what treatment your Dr offers.

                                      Julie in Las Vegas

                                        • April 25, 2012 at 1:18 am
                                        Wilfred
                                        Participant

                                          Julie, and eveybody else, thanks for the comment. It is important to me to have reasonable replies to my questions from people who have been there done that. I have been to see four doctors: Dr William Sharfman at Hopkins, Dr Anna Pavlick at NYUCC in NYC, Dr Lynn Schuchter at Abramson Cancer Cenetr at UPenn in Philadelphia and Dr Paul Chapman at MSKCC.  

                                          Here are my thoughts; I am being honest, I am not here for brownie points, I am here for me and you: Sharfman is probably an excellent Oncologist but, for me, there was no fire in his belly. I got the impression he had been doing this gig for a long time and was going to play the same old tunes. Pavlick is a firecracker. She has a goal: she wants me to survive and play with my grandchildren. She said that if the trial she has going doesn't work in two months she would pull me out and do something else. She is interested in me, she is interested in my winning the fight with her help. Schuchter is a slightly more reserved Pavlick, but a strong person and great doctor. Now I had a real problem, I was a believer in both Dr Pavlick and Dr Schuchter: they were here for me, they wanted me to beat this thing. Then we met with Dr Chapman at MSKCC. MSKCC did not have a trial for which I would qualify and Dr Chapman was dream come true. He discussed my history in detai, he listened to my search for a trial and he examined me thouroughly. He said that I wouldn't go wrong with Dr Pavlick's BRAF/MEK trial. The next day I signed the consent form with NYUCC. The trial is with a combo of Zelboraf and an unapproved drug GDC0973. 

                                          So… that's where we stand; in the past week I have had lots of tests and on Tuesday, May 1, I start the meds. The system/marketplace, whatever you want to call it is truly amazing. Within 45 days I have been able to meet with 4 of the top Melanoma Doctors in the US, and become a member of a very limited number of people privileged to join a trial with real possibilites of success. My family participated in the decision process and with lots of my friends will help me win this fight. Best wishes to you all, Wilfred

                                          • April 25, 2012 at 1:18 am
                                          Wilfred
                                          Participant

                                            Julie, and eveybody else, thanks for the comment. It is important to me to have reasonable replies to my questions from people who have been there done that. I have been to see four doctors: Dr William Sharfman at Hopkins, Dr Anna Pavlick at NYUCC in NYC, Dr Lynn Schuchter at Abramson Cancer Cenetr at UPenn in Philadelphia and Dr Paul Chapman at MSKCC.  

                                            Here are my thoughts; I am being honest, I am not here for brownie points, I am here for me and you: Sharfman is probably an excellent Oncologist but, for me, there was no fire in his belly. I got the impression he had been doing this gig for a long time and was going to play the same old tunes. Pavlick is a firecracker. She has a goal: she wants me to survive and play with my grandchildren. She said that if the trial she has going doesn't work in two months she would pull me out and do something else. She is interested in me, she is interested in my winning the fight with her help. Schuchter is a slightly more reserved Pavlick, but a strong person and great doctor. Now I had a real problem, I was a believer in both Dr Pavlick and Dr Schuchter: they were here for me, they wanted me to beat this thing. Then we met with Dr Chapman at MSKCC. MSKCC did not have a trial for which I would qualify and Dr Chapman was dream come true. He discussed my history in detai, he listened to my search for a trial and he examined me thouroughly. He said that I wouldn't go wrong with Dr Pavlick's BRAF/MEK trial. The next day I signed the consent form with NYUCC. The trial is with a combo of Zelboraf and an unapproved drug GDC0973. 

                                            So… that's where we stand; in the past week I have had lots of tests and on Tuesday, May 1, I start the meds. The system/marketplace, whatever you want to call it is truly amazing. Within 45 days I have been able to meet with 4 of the top Melanoma Doctors in the US, and become a member of a very limited number of people privileged to join a trial with real possibilites of success. My family participated in the decision process and with lots of my friends will help me win this fight. Best wishes to you all, Wilfred

                                            • April 25, 2012 at 1:18 am
                                            Wilfred
                                            Participant

                                              Julie, and eveybody else, thanks for the comment. It is important to me to have reasonable replies to my questions from people who have been there done that. I have been to see four doctors: Dr William Sharfman at Hopkins, Dr Anna Pavlick at NYUCC in NYC, Dr Lynn Schuchter at Abramson Cancer Cenetr at UPenn in Philadelphia and Dr Paul Chapman at MSKCC.  

                                              Here are my thoughts; I am being honest, I am not here for brownie points, I am here for me and you: Sharfman is probably an excellent Oncologist but, for me, there was no fire in his belly. I got the impression he had been doing this gig for a long time and was going to play the same old tunes. Pavlick is a firecracker. She has a goal: she wants me to survive and play with my grandchildren. She said that if the trial she has going doesn't work in two months she would pull me out and do something else. She is interested in me, she is interested in my winning the fight with her help. Schuchter is a slightly more reserved Pavlick, but a strong person and great doctor. Now I had a real problem, I was a believer in both Dr Pavlick and Dr Schuchter: they were here for me, they wanted me to beat this thing. Then we met with Dr Chapman at MSKCC. MSKCC did not have a trial for which I would qualify and Dr Chapman was dream come true. He discussed my history in detai, he listened to my search for a trial and he examined me thouroughly. He said that I wouldn't go wrong with Dr Pavlick's BRAF/MEK trial. The next day I signed the consent form with NYUCC. The trial is with a combo of Zelboraf and an unapproved drug GDC0973. 

                                              So… that's where we stand; in the past week I have had lots of tests and on Tuesday, May 1, I start the meds. The system/marketplace, whatever you want to call it is truly amazing. Within 45 days I have been able to meet with 4 of the top Melanoma Doctors in the US, and become a member of a very limited number of people privileged to join a trial with real possibilites of success. My family participated in the decision process and with lots of my friends will help me win this fight. Best wishes to you all, Wilfred

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