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New here, Stage 3a, waiting for PET and Dr. Minor in San Francisco

Forums General Melanoma Community New here, Stage 3a, waiting for PET and Dr. Minor in San Francisco

  • Post
    Bunmom
    Participant

      Hello everyone, 

      I'm new here. I had a mole removed from my right forearm on Jan 29 and the path report showed Clark Level 4 malignant melanoma. However, it appeared that all was removed with the shave biopsy. I did go ahead and have a wide resection of my arm and sentinal node removal 2 weeks ago. 

      I spoke the the surgeon at length, who said only ONE node took up the dye, and it was the same ONE node that measured on the Geiger counter, so he only removed the one. He said the node looked good. 

      Hello everyone, 

      I'm new here. I had a mole removed from my right forearm on Jan 29 and the path report showed Clark Level 4 malignant melanoma. However, it appeared that all was removed with the shave biopsy. I did go ahead and have a wide resection of my arm and sentinal node removal 2 weeks ago. 

      I spoke the the surgeon at length, who said only ONE node took up the dye, and it was the same ONE node that measured on the Geiger counter, so he only removed the one. He said the node looked good. 

      Got a call back with my path report Tuesday: After using 4 different stains, the pathologist found a 0.1mm spot in the sentinal node, which he called micrometastisis. I saw an oncologist yesterday, who referred me to Dr. Miner in San Francisco. I see him next week and also have a PET scan scheduled, as well as BRAF testing of my original mole.

      The oncologist discussed a lot of options with me: various medications, interfueron therapy, clinical trials. He also mentioned further node removals versus radiation on my armpit. I'm a bit overwhelmed and emotionally drained. I want to be an advocate for myself but feel lost looking at all the options. 

      Any words of encouragement or hope would be appreciated. I have 2 kids at home and feel like I've been given a death sentence. To make matters worse, a good friend died of triple negative breast cancer the day I received the news that my path report showed malignant melanoma. So I was under some emotional strain at the outset of this journey. This diagnosis has made it far, far worse. I need HOPE because I'm having trouble here! 

    Viewing 23 reply threads
    • Replies
        MaryD
        Participant

          Sorry you are going through this right now – I am currently a patient of Dr. Minor as well and am actually a stage IV survivor (originally diagnosed 12 years ago).

          I know it's difficult to process and very frightening at first,  but please know you are far from a death sentence right now.   You have options in terms of treatments so take a deep breath and think about what will work best for you right now.  My melanoma was on my arm as well and while it initially didn't appear in the lymph nodes, it did years later and I had the nodes removed.    Honestly I haven't had any issues with arm swelling and for me, it was a relatively easy procedure.   That along with some adujuvant therapy of your choice could be good ammnunition against the melanoma.

          There is lots of support on this board so you came to the right place!   

          Best regards,

          Mary

           

           

          MaryD
          Participant

            Sorry you are going through this right now – I am currently a patient of Dr. Minor as well and am actually a stage IV survivor (originally diagnosed 12 years ago).

            I know it's difficult to process and very frightening at first,  but please know you are far from a death sentence right now.   You have options in terms of treatments so take a deep breath and think about what will work best for you right now.  My melanoma was on my arm as well and while it initially didn't appear in the lymph nodes, it did years later and I had the nodes removed.    Honestly I haven't had any issues with arm swelling and for me, it was a relatively easy procedure.   That along with some adujuvant therapy of your choice could be good ammnunition against the melanoma.

            There is lots of support on this board so you came to the right place!   

            Best regards,

            Mary

             

             

            MaryD
            Participant

              Sorry you are going through this right now – I am currently a patient of Dr. Minor as well and am actually a stage IV survivor (originally diagnosed 12 years ago).

              I know it's difficult to process and very frightening at first,  but please know you are far from a death sentence right now.   You have options in terms of treatments so take a deep breath and think about what will work best for you right now.  My melanoma was on my arm as well and while it initially didn't appear in the lymph nodes, it did years later and I had the nodes removed.    Honestly I haven't had any issues with arm swelling and for me, it was a relatively easy procedure.   That along with some adujuvant therapy of your choice could be good ammnunition against the melanoma.

              There is lots of support on this board so you came to the right place!   

              Best regards,

              Mary

               

               

              washoegal
              Participant

                This is absolutely NOT a death sentence.  You have been referred to one of the best in the business so just take a deep breath and wait a little while until you discuss things with Dr Miner.  I am stage 3a with 2 nodes positive.  I have been NED (no evidence of disease) for almost 3 years!  I chose to have a complete lymph node dissection and then no futher treatment …just lots of scans! 

                Take a notebook with you and another adult.  ask questions.  You may find you have to tell the doc "wait a minute, I don't understand" or "put that in english please" or "I'm not done yet".  Sometimes they are so busy they seem to forget that we need time to collect our thoughts.  So don't be shy.  I've used all those phrases at one time or another and I'm really not a stupid person. 

                When first diagnosed we all tend to jump on the internet and want to look at statistics.  Statistics don't mean a thing anymore.  The field is changing fast.  You have a great chance of beating this thing.  Try to eat well and concentrate on your wonderful kids. 

                The waiting will be the worse part, then trying to decide on the next course of action is also no walk in the park.  No one can tell you what is right for you.  Find out what each success rate is for each treatment.  Find out what the side effects are and see how they would fit into your lifestyle.  Consider if you have friends or family members to help with kids and house while in treatment if that's what you decide.  remember, "wait and watch", the route I took is also an option.  You will find strength to do this.

                Good luck and keep in touch,

                Mary

                washoegal
                Participant

                  This is absolutely NOT a death sentence.  You have been referred to one of the best in the business so just take a deep breath and wait a little while until you discuss things with Dr Miner.  I am stage 3a with 2 nodes positive.  I have been NED (no evidence of disease) for almost 3 years!  I chose to have a complete lymph node dissection and then no futher treatment …just lots of scans! 

                  Take a notebook with you and another adult.  ask questions.  You may find you have to tell the doc "wait a minute, I don't understand" or "put that in english please" or "I'm not done yet".  Sometimes they are so busy they seem to forget that we need time to collect our thoughts.  So don't be shy.  I've used all those phrases at one time or another and I'm really not a stupid person. 

                  When first diagnosed we all tend to jump on the internet and want to look at statistics.  Statistics don't mean a thing anymore.  The field is changing fast.  You have a great chance of beating this thing.  Try to eat well and concentrate on your wonderful kids. 

                  The waiting will be the worse part, then trying to decide on the next course of action is also no walk in the park.  No one can tell you what is right for you.  Find out what each success rate is for each treatment.  Find out what the side effects are and see how they would fit into your lifestyle.  Consider if you have friends or family members to help with kids and house while in treatment if that's what you decide.  remember, "wait and watch", the route I took is also an option.  You will find strength to do this.

                  Good luck and keep in touch,

                  Mary

                  washoegal
                  Participant

                    This is absolutely NOT a death sentence.  You have been referred to one of the best in the business so just take a deep breath and wait a little while until you discuss things with Dr Miner.  I am stage 3a with 2 nodes positive.  I have been NED (no evidence of disease) for almost 3 years!  I chose to have a complete lymph node dissection and then no futher treatment …just lots of scans! 

                    Take a notebook with you and another adult.  ask questions.  You may find you have to tell the doc "wait a minute, I don't understand" or "put that in english please" or "I'm not done yet".  Sometimes they are so busy they seem to forget that we need time to collect our thoughts.  So don't be shy.  I've used all those phrases at one time or another and I'm really not a stupid person. 

                    When first diagnosed we all tend to jump on the internet and want to look at statistics.  Statistics don't mean a thing anymore.  The field is changing fast.  You have a great chance of beating this thing.  Try to eat well and concentrate on your wonderful kids. 

                    The waiting will be the worse part, then trying to decide on the next course of action is also no walk in the park.  No one can tell you what is right for you.  Find out what each success rate is for each treatment.  Find out what the side effects are and see how they would fit into your lifestyle.  Consider if you have friends or family members to help with kids and house while in treatment if that's what you decide.  remember, "wait and watch", the route I took is also an option.  You will find strength to do this.

                    Good luck and keep in touch,

                    Mary

                    JerryfromFauq
                    Participant

                      Yes, get the PET scan.  Just remember that the PET scan does not measure CANCER, It measures sugar uptake of tissues.  Tumors do tend to have a higher uptake than healthy tissue, but injuries can also cause hot spots.  A hot spot is something to check further, not a guarantee of cancer.  PET's help but are known for false positives and false negatives.

                      You have not been given a DEATH Sentence!  I refused to accept my diagnosis at stage IV as a death sentence in 2007,nd still don't accept as such.   You have been given notice to be vigilant.  Do not be paranoid.

                      JerryfromFauq
                      Participant

                        Yes, get the PET scan.  Just remember that the PET scan does not measure CANCER, It measures sugar uptake of tissues.  Tumors do tend to have a higher uptake than healthy tissue, but injuries can also cause hot spots.  A hot spot is something to check further, not a guarantee of cancer.  PET's help but are known for false positives and false negatives.

                        You have not been given a DEATH Sentence!  I refused to accept my diagnosis at stage IV as a death sentence in 2007,nd still don't accept as such.   You have been given notice to be vigilant.  Do not be paranoid.

                        JerryfromFauq
                        Participant

                          Yes, get the PET scan.  Just remember that the PET scan does not measure CANCER, It measures sugar uptake of tissues.  Tumors do tend to have a higher uptake than healthy tissue, but injuries can also cause hot spots.  A hot spot is something to check further, not a guarantee of cancer.  PET's help but are known for false positives and false negatives.

                          You have not been given a DEATH Sentence!  I refused to accept my diagnosis at stage IV as a death sentence in 2007,nd still don't accept as such.   You have been given notice to be vigilant.  Do not be paranoid.

                          democat
                          Participant

                            I'm new to the board too.  I had a shave biopsy in December – came back as melanoma – clark's level 4-5, depth 4.5mm.  I had wide excision and sentinel node biopsy in mid-January.  The surgeon removed 2 nodes which turned out to be 5 nodes – 2 sentinel and 3 secondary.  One of the sentinel nodes had micromatastisis. So on February 6, I had an axillary node dissection – they removed 14 more nodes, none of which showed cancer.  I thought I was stage 3a, and took some comfort from that, until I met with Kaiser Permanente's only melanoma specialist (Dr. Gailani) and learned that I am really more of a 3b because of the mitotic index of my tumor (4).   This brought on 2 days of crying and extreme anxiety.  

                            Early on, I ruled out interferon, and started reading Anti-Cancer, and almost convinced myself that I could beat this with diet and exercise.  But, then I started reading about biochemotherapy, which Kaiser offers in Riverside.  I decided I could do 3 months of anything to improve my odds.  Then, today I learned that Dr. Gailani, who runs the advanced biochemotherapy program, is on indefinite medical leave.  His replacement has virtually no melanoma experience and is covering for 3 other doctors, and had no time to answer any of my questions.  Since the protocol is scary and somewhat dangerous, I don't want to do it without experienced and attentive oversight.

                            So I'm back to square 1.  I have been wracking my brain for weeks about this now, and still don't know what to do.  Dr. Gailani ordered a brain MRI, which I'm doing next week.  I'm sure I'll be freaked out waiting for results. I'm also paying for a consultation with Dr. Greg Daniels at UCSD.  I keep hoping some piece of information will help me make this decision.  I keep wishing one of my doctors would make a recommendation, but none of them are willing to do that.        

                            I think it's important to do the lymph node dissection to know what you're dealing with and to get accurate staging.  So I would start there.  Recovery has not been bad – I am obsessivly stretching the scar tissue so that I will have full range of motion.

                             

                            Best of luck,

                             

                            Roxanne

                                       

                            democat
                            Participant

                              I'm new to the board too.  I had a shave biopsy in December – came back as melanoma – clark's level 4-5, depth 4.5mm.  I had wide excision and sentinel node biopsy in mid-January.  The surgeon removed 2 nodes which turned out to be 5 nodes – 2 sentinel and 3 secondary.  One of the sentinel nodes had micromatastisis. So on February 6, I had an axillary node dissection – they removed 14 more nodes, none of which showed cancer.  I thought I was stage 3a, and took some comfort from that, until I met with Kaiser Permanente's only melanoma specialist (Dr. Gailani) and learned that I am really more of a 3b because of the mitotic index of my tumor (4).   This brought on 2 days of crying and extreme anxiety.  

                              Early on, I ruled out interferon, and started reading Anti-Cancer, and almost convinced myself that I could beat this with diet and exercise.  But, then I started reading about biochemotherapy, which Kaiser offers in Riverside.  I decided I could do 3 months of anything to improve my odds.  Then, today I learned that Dr. Gailani, who runs the advanced biochemotherapy program, is on indefinite medical leave.  His replacement has virtually no melanoma experience and is covering for 3 other doctors, and had no time to answer any of my questions.  Since the protocol is scary and somewhat dangerous, I don't want to do it without experienced and attentive oversight.

                              So I'm back to square 1.  I have been wracking my brain for weeks about this now, and still don't know what to do.  Dr. Gailani ordered a brain MRI, which I'm doing next week.  I'm sure I'll be freaked out waiting for results. I'm also paying for a consultation with Dr. Greg Daniels at UCSD.  I keep hoping some piece of information will help me make this decision.  I keep wishing one of my doctors would make a recommendation, but none of them are willing to do that.        

                              I think it's important to do the lymph node dissection to know what you're dealing with and to get accurate staging.  So I would start there.  Recovery has not been bad – I am obsessivly stretching the scar tissue so that I will have full range of motion.

                               

                              Best of luck,

                               

                              Roxanne

                                         

                                Hstevens0072
                                Participant
                                  Since Kaiser doesn’t have a melanoma specialist will they refer you to an out of service provider? I think they usually have a clause about that. Best of luck.
                                  Hstevens0072
                                  Participant
                                    Since Kaiser doesn’t have a melanoma specialist will they refer you to an out of service provider? I think they usually have a clause about that. Best of luck.
                                    Hstevens0072
                                    Participant
                                      Since Kaiser doesn’t have a melanoma specialist will they refer you to an out of service provider? I think they usually have a clause about that. Best of luck.
                                      MaryD
                                      Participant

                                        Hi Roxanne,

                                        I am a stage IV survivor lviing here in the East Bay Area and am a coordinator for a local independent melanoma tumor board that is part of the Bay Area Tumor Institute in Oakland.    Not sure where you live, but if you are in the East Bay, and would like some additional opinions, let me know and we would be happy to have you evaluated at our next tumor board meeting.    There are no charges for this service as it is a community based organization.   Dr. Minor at CPMC and Dr. Daud at UCSF are two excellent specialists in San Francisco and we have a database of cllinical trials that are being offered a those centers as well as others.

                                        Wishing you the best of luck,

                                        Mary

                                        [email protected]

                                         

                                         

                                        MaryD
                                        Participant

                                          Hi Roxanne,

                                          I am a stage IV survivor lviing here in the East Bay Area and am a coordinator for a local independent melanoma tumor board that is part of the Bay Area Tumor Institute in Oakland.    Not sure where you live, but if you are in the East Bay, and would like some additional opinions, let me know and we would be happy to have you evaluated at our next tumor board meeting.    There are no charges for this service as it is a community based organization.   Dr. Minor at CPMC and Dr. Daud at UCSF are two excellent specialists in San Francisco and we have a database of cllinical trials that are being offered a those centers as well as others.

                                          Wishing you the best of luck,

                                          Mary

                                          [email protected]

                                           

                                           

                                          MaryD
                                          Participant

                                            Hi Roxanne,

                                            I am a stage IV survivor lviing here in the East Bay Area and am a coordinator for a local independent melanoma tumor board that is part of the Bay Area Tumor Institute in Oakland.    Not sure where you live, but if you are in the East Bay, and would like some additional opinions, let me know and we would be happy to have you evaluated at our next tumor board meeting.    There are no charges for this service as it is a community based organization.   Dr. Minor at CPMC and Dr. Daud at UCSF are two excellent specialists in San Francisco and we have a database of cllinical trials that are being offered a those centers as well as others.

                                            Wishing you the best of luck,

                                            Mary

                                            [email protected]

                                             

                                             

                                          democat
                                          Participant

                                            I'm new to the board too.  I had a shave biopsy in December – came back as melanoma – clark's level 4-5, depth 4.5mm.  I had wide excision and sentinel node biopsy in mid-January.  The surgeon removed 2 nodes which turned out to be 5 nodes – 2 sentinel and 3 secondary.  One of the sentinel nodes had micromatastisis. So on February 6, I had an axillary node dissection – they removed 14 more nodes, none of which showed cancer.  I thought I was stage 3a, and took some comfort from that, until I met with Kaiser Permanente's only melanoma specialist (Dr. Gailani) and learned that I am really more of a 3b because of the mitotic index of my tumor (4).   This brought on 2 days of crying and extreme anxiety.  

                                            Early on, I ruled out interferon, and started reading Anti-Cancer, and almost convinced myself that I could beat this with diet and exercise.  But, then I started reading about biochemotherapy, which Kaiser offers in Riverside.  I decided I could do 3 months of anything to improve my odds.  Then, today I learned that Dr. Gailani, who runs the advanced biochemotherapy program, is on indefinite medical leave.  His replacement has virtually no melanoma experience and is covering for 3 other doctors, and had no time to answer any of my questions.  Since the protocol is scary and somewhat dangerous, I don't want to do it without experienced and attentive oversight.

                                            So I'm back to square 1.  I have been wracking my brain for weeks about this now, and still don't know what to do.  Dr. Gailani ordered a brain MRI, which I'm doing next week.  I'm sure I'll be freaked out waiting for results. I'm also paying for a consultation with Dr. Greg Daniels at UCSD.  I keep hoping some piece of information will help me make this decision.  I keep wishing one of my doctors would make a recommendation, but none of them are willing to do that.        

                                            I think it's important to do the lymph node dissection to know what you're dealing with and to get accurate staging.  So I would start there.  Recovery has not been bad – I am obsessivly stretching the scar tissue so that I will have full range of motion.

                                             

                                            Best of luck,

                                             

                                            Roxanne

                                                       

                                            democat
                                            Participant

                                              I am new to the board too. I had a shave biopsy in December – came back as melanoma – clark's level 4-5, depth 4.5mm; I had wide excision and sentinel node biopsy in mid-January. The surgeon removed 2 nodes which turned out to be 5 nodes – 2 sentinel and 3 secondary. One of the sentinel nodes had micromatastisis. So on February 6, I had an axillary node dissection – they removed 14 more nodes, none of which showed cancer. I thought I was stage 3a, and took some comfort from that, until I met with Kaiser Permanente's only melanoma specialist (Dr. Gailani) and learned that I am really more of a 3b because of the mitotic index of my tumor (4). This brought on 2 days of crying and extreme anxiety. Early on, I ruled out interferon, and started reading Anti-Cancer, and almost convinced myself that I could beat this with diet and exercise. But, then I started reading about biochemotherapy, which Kaiser offers in Riverside. I decided I could do 3 months of anything to improve my odds. Then, today I learned that Dr. Gailani, who runs the advanced biochemotherapy program, is on indefinite medical leave. His replacement has virtually no melanoma experience and is covering for 3 other doctors, and had no time to answer any of my questions. Since the protocol is scary and somewhat dangerous, I don't want to do it without experienced and attentive oversight. So I am back to square 1. I have been wracking my brain for weeks about this now, and still don't know what to do. Dr. Gailani ordered a brain MRI, which I'm doing next week. I'm sure I'll be freaked out waiting for results. I am also paying for a consultation with Dr. Greg Daniels at UCSD. I keep hoping some piece of information will help me make this decision. I keep wishing one of my doctors would make a recommendation, but none of them are willing to do that. I think it is important to do the lymph node dissection to know what you are dealing with and to get accurate staging. So I would start there. Recovery from that surgery has not been bad – I am obsessivly stretching the scar tissue so that I will have full range of motion. Best of luck Roxanne

                                              democat
                                              Participant

                                                I am new to the board too. I had a shave biopsy in December – came back as melanoma – clark's level 4-5, depth 4.5mm; I had wide excision and sentinel node biopsy in mid-January. The surgeon removed 2 nodes which turned out to be 5 nodes – 2 sentinel and 3 secondary. One of the sentinel nodes had micromatastisis. So on February 6, I had an axillary node dissection – they removed 14 more nodes, none of which showed cancer. I thought I was stage 3a, and took some comfort from that, until I met with Kaiser Permanente's only melanoma specialist (Dr. Gailani) and learned that I am really more of a 3b because of the mitotic index of my tumor (4). This brought on 2 days of crying and extreme anxiety. Early on, I ruled out interferon, and started reading Anti-Cancer, and almost convinced myself that I could beat this with diet and exercise. But, then I started reading about biochemotherapy, which Kaiser offers in Riverside. I decided I could do 3 months of anything to improve my odds. Then, today I learned that Dr. Gailani, who runs the advanced biochemotherapy program, is on indefinite medical leave. His replacement has virtually no melanoma experience and is covering for 3 other doctors, and had no time to answer any of my questions. Since the protocol is scary and somewhat dangerous, I don't want to do it without experienced and attentive oversight. So I am back to square 1. I have been wracking my brain for weeks about this now, and still don't know what to do. Dr. Gailani ordered a brain MRI, which I'm doing next week. I'm sure I'll be freaked out waiting for results. I am also paying for a consultation with Dr. Greg Daniels at UCSD. I keep hoping some piece of information will help me make this decision. I keep wishing one of my doctors would make a recommendation, but none of them are willing to do that. I think it is important to do the lymph node dissection to know what you are dealing with and to get accurate staging. So I would start there. Recovery from that surgery has not been bad – I am obsessivly stretching the scar tissue so that I will have full range of motion. Best of luck Roxanne

                                                democat
                                                Participant

                                                  I am new to the board too. I had a shave biopsy in December – came back as melanoma – clark's level 4-5, depth 4.5mm; I had wide excision and sentinel node biopsy in mid-January. The surgeon removed 2 nodes which turned out to be 5 nodes – 2 sentinel and 3 secondary. One of the sentinel nodes had micromatastisis. So on February 6, I had an axillary node dissection – they removed 14 more nodes, none of which showed cancer. I thought I was stage 3a, and took some comfort from that, until I met with Kaiser Permanente's only melanoma specialist (Dr. Gailani) and learned that I am really more of a 3b because of the mitotic index of my tumor (4). This brought on 2 days of crying and extreme anxiety. Early on, I ruled out interferon, and started reading Anti-Cancer, and almost convinced myself that I could beat this with diet and exercise. But, then I started reading about biochemotherapy, which Kaiser offers in Riverside. I decided I could do 3 months of anything to improve my odds. Then, today I learned that Dr. Gailani, who runs the advanced biochemotherapy program, is on indefinite medical leave. His replacement has virtually no melanoma experience and is covering for 3 other doctors, and had no time to answer any of my questions. Since the protocol is scary and somewhat dangerous, I don't want to do it without experienced and attentive oversight. So I am back to square 1. I have been wracking my brain for weeks about this now, and still don't know what to do. Dr. Gailani ordered a brain MRI, which I'm doing next week. I'm sure I'll be freaked out waiting for results. I am also paying for a consultation with Dr. Greg Daniels at UCSD. I keep hoping some piece of information will help me make this decision. I keep wishing one of my doctors would make a recommendation, but none of them are willing to do that. I think it is important to do the lymph node dissection to know what you are dealing with and to get accurate staging. So I would start there. Recovery from that surgery has not been bad – I am obsessivly stretching the scar tissue so that I will have full range of motion. Best of luck Roxanne

                                                  democat
                                                  Participant

                                                    I don't know why my post showed up twice.  I wanted to add that it is encourageing to hear from all of you who have been NED for years.  The statistics are scary, but I think your odds are much better if you are vigilant in self examination, eat healthy, exercise, and keep fighting (no matter how you choose to fight).  Thank you to all of you who have been the odds and give encouragement to the rest of us!!

                                                     

                                                    Roxanne

                                                    democat
                                                    Participant

                                                      I don't know why my post showed up twice.  I wanted to add that it is encourageing to hear from all of you who have been NED for years.  The statistics are scary, but I think your odds are much better if you are vigilant in self examination, eat healthy, exercise, and keep fighting (no matter how you choose to fight).  Thank you to all of you who have been the odds and give encouragement to the rest of us!!

                                                       

                                                      Roxanne

                                                        JerryfromFauq
                                                        Participant

                                                          Roxanne, this board is slow on the registeration and often gets a second posting of the same post.  On the subjedt of the biochem, You defenitely want to have an experienced Oncologist and staff to monitor/administer the IL-2.  In-expereinced people can present major problems for the patient.  There area experienced locations in Calif.  Most Oncologist stay away from the ILO-2 side beacause they do not have the proper experience to admenister it without major side effects and problems.  (My Oncologist has had over 30 years experience with it.)  Can you get a refferal to an experienced center/Oncologist?

                                                          democat
                                                          Participant

                                                            I need to get reliable information on who will be running Kaiser's biochemo program in Dr. Gailani's absence, which will be difficult.  Everyone I talk to at Kaiser indicates he'll be back "in a few days." But he told me he doesn't know when he'll be back and made it sound long term – he said, "if you do the program, I won't be there." So, I'm not sure Kaiser will let me go out of system.  I am getting a second opinon from Dr. Gregory Daniels at UCSD on Wednesday.

                                                            democat
                                                            Participant

                                                              I need to get reliable information on who will be running Kaiser's biochemo program in Dr. Gailani's absence, which will be difficult.  Everyone I talk to at Kaiser indicates he'll be back "in a few days." But he told me he doesn't know when he'll be back and made it sound long term – he said, "if you do the program, I won't be there." So, I'm not sure Kaiser will let me go out of system.  I am getting a second opinon from Dr. Gregory Daniels at UCSD on Wednesday.

                                                              democat
                                                              Participant

                                                                I need to get reliable information on who will be running Kaiser's biochemo program in Dr. Gailani's absence, which will be difficult.  Everyone I talk to at Kaiser indicates he'll be back "in a few days." But he told me he doesn't know when he'll be back and made it sound long term – he said, "if you do the program, I won't be there." So, I'm not sure Kaiser will let me go out of system.  I am getting a second opinon from Dr. Gregory Daniels at UCSD on Wednesday.

                                                                JerryfromFauq
                                                                Participant

                                                                  Roxanne, this board is slow on the registeration and often gets a second posting of the same post.  On the subjedt of the biochem, You defenitely want to have an experienced Oncologist and staff to monitor/administer the IL-2.  In-expereinced people can present major problems for the patient.  There area experienced locations in Calif.  Most Oncologist stay away from the ILO-2 side beacause they do not have the proper experience to admenister it without major side effects and problems.  (My Oncologist has had over 30 years experience with it.)  Can you get a refferal to an experienced center/Oncologist?

                                                                  JerryfromFauq
                                                                  Participant

                                                                    Roxanne, this board is slow on the registeration and often gets a second posting of the same post.  On the subjedt of the biochem, You defenitely want to have an experienced Oncologist and staff to monitor/administer the IL-2.  In-expereinced people can present major problems for the patient.  There area experienced locations in Calif.  Most Oncologist stay away from the ILO-2 side beacause they do not have the proper experience to admenister it without major side effects and problems.  (My Oncologist has had over 30 years experience with it.)  Can you get a refferal to an experienced center/Oncologist?

                                                                    kylez
                                                                    Participant

                                                                      Hi Roxanne,

                                                                      I'm sorry to hear what you're going through. I got 4 cycles of IL-2 (not the biochemotherapy regimen also offered by Riverside ABC program, just the straight high-dose IL-2) from Dr. Gailani and Kaiser Riverside in 2010.  I'm sorry hear he's on medical leave. Given the bind you feel that leaves you in, and given your stage (IIIb) you might want to look into clinical trials, at the clinicaltrials.gov web site.

                                                                      The following search on that site (linked here) for "melanona and IIIb" has hits and misses, and may not include all trials for IIIb, but it contains quite a few. As Kaiser is a "closed system", a clinical trial may be the only affordable way you can go outside of Kaiser. Random oncologists at Kaiser have a variable record of being supportive (e.g., supporting you and ordering tests) for clinical trials, but that's a barrier in most cases should be able to be overcome, other Kaiser patients have done it (some likely had to fight the system a bit).

                                                                      Good luck, Kyle 

                                                                      kylez
                                                                      Participant

                                                                        Hi Roxanne,

                                                                        I'm sorry to hear what you're going through. I got 4 cycles of IL-2 (not the biochemotherapy regimen also offered by Riverside ABC program, just the straight high-dose IL-2) from Dr. Gailani and Kaiser Riverside in 2010.  I'm sorry hear he's on medical leave. Given the bind you feel that leaves you in, and given your stage (IIIb) you might want to look into clinical trials, at the clinicaltrials.gov web site.

                                                                        The following search on that site (linked here) for "melanona and IIIb" has hits and misses, and may not include all trials for IIIb, but it contains quite a few. As Kaiser is a "closed system", a clinical trial may be the only affordable way you can go outside of Kaiser. Random oncologists at Kaiser have a variable record of being supportive (e.g., supporting you and ordering tests) for clinical trials, but that's a barrier in most cases should be able to be overcome, other Kaiser patients have done it (some likely had to fight the system a bit).

                                                                        Good luck, Kyle 

                                                                        kylez
                                                                        Participant

                                                                          Hi Roxanne,

                                                                          I'm sorry to hear what you're going through. I got 4 cycles of IL-2 (not the biochemotherapy regimen also offered by Riverside ABC program, just the straight high-dose IL-2) from Dr. Gailani and Kaiser Riverside in 2010.  I'm sorry hear he's on medical leave. Given the bind you feel that leaves you in, and given your stage (IIIb) you might want to look into clinical trials, at the clinicaltrials.gov web site.

                                                                          The following search on that site (linked here) for "melanona and IIIb" has hits and misses, and may not include all trials for IIIb, but it contains quite a few. As Kaiser is a "closed system", a clinical trial may be the only affordable way you can go outside of Kaiser. Random oncologists at Kaiser have a variable record of being supportive (e.g., supporting you and ordering tests) for clinical trials, but that's a barrier in most cases should be able to be overcome, other Kaiser patients have done it (some likely had to fight the system a bit).

                                                                          Good luck, Kyle 

                                                                          kylez
                                                                          Participant

                                                                            Another thing I and others would recommend with Kaiser is to get a second opinion from a melanoma specialist oncologist. Some patients have succeeded in getting Kaiser to pay for the second opinion; I didn't even try that and paid my own way (about $400/visit in 2010 with a melanoma specializing oncologist at at academic hospital with a specialist melanoma clinic). 

                                                                            This site and the Aim at Melanoma site both have doctor finders. The one at this site is here: http://www.melanoma.org/learn-more/melanoma-treatment-center-finder

                                                                            kylez
                                                                            Participant

                                                                              Another thing I and others would recommend with Kaiser is to get a second opinion from a melanoma specialist oncologist. Some patients have succeeded in getting Kaiser to pay for the second opinion; I didn't even try that and paid my own way (about $400/visit in 2010 with a melanoma specializing oncologist at at academic hospital with a specialist melanoma clinic). 

                                                                              This site and the Aim at Melanoma site both have doctor finders. The one at this site is here: http://www.melanoma.org/learn-more/melanoma-treatment-center-finder

                                                                              kylez
                                                                              Participant

                                                                                Another thing I and others would recommend with Kaiser is to get a second opinion from a melanoma specialist oncologist. Some patients have succeeded in getting Kaiser to pay for the second opinion; I didn't even try that and paid my own way (about $400/visit in 2010 with a melanoma specializing oncologist at at academic hospital with a specialist melanoma clinic). 

                                                                                This site and the Aim at Melanoma site both have doctor finders. The one at this site is here: http://www.melanoma.org/learn-more/melanoma-treatment-center-finder

                                                                              democat
                                                                              Participant

                                                                                I don't know why my post showed up twice.  I wanted to add that it is encourageing to hear from all of you who have been NED for years.  The statistics are scary, but I think your odds are much better if you are vigilant in self examination, eat healthy, exercise, and keep fighting (no matter how you choose to fight).  Thank you to all of you who have been the odds and give encouragement to the rest of us!!

                                                                                 

                                                                                Roxanne

                                                                                Gene_S
                                                                                Participant

                                                                                  Hello,

                                                                                  Sorry you had to join this board but it is a rather good place to be to find out information and what others are doing as far as treatments.

                                                                                  First let me say that Clark Level 4 is not Stage IV cancer.  Stage IV is when it has metastisized to organs.  My husband initial surgery was for a 10.5 mm lesion and he wasn't even stage IV for 2 years and 10 months and then it was in his liver, lungs and an unresectable one on the cervical spine up at C1-C2 (that is the top of the spine at the brain area) area with sub q's in this area also.  With all the new drugs that came out and more that are coming out he is on a clinical trial for 2 years now and has been NED (no evidence of disease) for approximately 9 months now.

                                                                                  To plan ahead is great when you get options of what you can do.  His treatment was Plan A but if it failed we do have Plan B planned out and at times have even had Plan C and Plan D in mind to go with if needed.

                                                                                  My husband before it had metastisized was doing the watch and wait and he had 4 surgeries before starting his clinical trial.  Hope this helps some.  If you would like to read more you can read his profile page.

                                                                                  Judy (loving wife of Gene Stage IV and now NED)

                                                                                  Gene_S
                                                                                  Participant

                                                                                    Hello,

                                                                                    Sorry you had to join this board but it is a rather good place to be to find out information and what others are doing as far as treatments.

                                                                                    First let me say that Clark Level 4 is not Stage IV cancer.  Stage IV is when it has metastisized to organs.  My husband initial surgery was for a 10.5 mm lesion and he wasn't even stage IV for 2 years and 10 months and then it was in his liver, lungs and an unresectable one on the cervical spine up at C1-C2 (that is the top of the spine at the brain area) area with sub q's in this area also.  With all the new drugs that came out and more that are coming out he is on a clinical trial for 2 years now and has been NED (no evidence of disease) for approximately 9 months now.

                                                                                    To plan ahead is great when you get options of what you can do.  His treatment was Plan A but if it failed we do have Plan B planned out and at times have even had Plan C and Plan D in mind to go with if needed.

                                                                                    My husband before it had metastisized was doing the watch and wait and he had 4 surgeries before starting his clinical trial.  Hope this helps some.  If you would like to read more you can read his profile page.

                                                                                    Judy (loving wife of Gene Stage IV and now NED)

                                                                                    Gene_S
                                                                                    Participant

                                                                                      Hello,

                                                                                      Sorry you had to join this board but it is a rather good place to be to find out information and what others are doing as far as treatments.

                                                                                      First let me say that Clark Level 4 is not Stage IV cancer.  Stage IV is when it has metastisized to organs.  My husband initial surgery was for a 10.5 mm lesion and he wasn't even stage IV for 2 years and 10 months and then it was in his liver, lungs and an unresectable one on the cervical spine up at C1-C2 (that is the top of the spine at the brain area) area with sub q's in this area also.  With all the new drugs that came out and more that are coming out he is on a clinical trial for 2 years now and has been NED (no evidence of disease) for approximately 9 months now.

                                                                                      To plan ahead is great when you get options of what you can do.  His treatment was Plan A but if it failed we do have Plan B planned out and at times have even had Plan C and Plan D in mind to go with if needed.

                                                                                      My husband before it had metastisized was doing the watch and wait and he had 4 surgeries before starting his clinical trial.  Hope this helps some.  If you would like to read more you can read his profile page.

                                                                                      Judy (loving wife of Gene Stage IV and now NED)

                                                                                      _Paul_
                                                                                      Participant

                                                                                        I am a 3a as well, diagnosed on 07/03/12. My primary was smack dab in the middle of the bald spot on the back of my head and the micromet was found in a lymph node in my neck. It turns out the scalp is a tough area to close after a WLE and I was sent home from the hospital under the impression I was all closed up but underneath the tegaderm was a quarter-sized hole. I was referred to an excellent plastic surgeon who managed to close it up but there is still a pretty good size part of my scalp that remains numb. I was offered the CLND but wasn't too keen on the idea of more surgery.

                                                                                        Because of this board I found a clinical trial at Hopkins in Baltimore which I am now enrolled in. If you elect to go this route be patient because there are some administrative hurdles (insurance is the big one) to overcome getting into the trial that can seem challenging at the time, but for me anyway, I just kept pushing it forward without regard to what the insurance outcome was going to be (it turns out that insurance is picking up the tab on those parts of the trial that are not provided by the trial itself–the exams and scans and labwork).

                                                                                        There was also some question at one point about an "enhancement" that showed up on my skull under the site of the primary. I had to wait a few months for a rescan and it turned out to be benign.

                                                                                        In my case I don't really know if the trial will help me (I hope it will, all the research I have done seems to validate what they are trying to accomplish–a vaccine to stimulate my immune system against melanoma). But I just have a hard time with the wait and watch approach. At least this way I feel I am doing something to fight back.

                                                                                        I live in Seattle and fly to Baltimore once a month for the treatment. At first that sounded like a pretty large obstacle but the way I look at it is if this saves my life than the costs of the travel and the time off work are small potatoes.

                                                                                        Like others here I am sorry you are joining our ranks but you have found a really useful resource here in this board!

                                                                                        Take care – Paul.

                                                                                          Hstevens0072
                                                                                          Participant
                                                                                            Hi, mine was on my head too, covered by my hair, only vanity had me have someone take a look at it. I thought anyone standing behind me could see it because of the way I wear my hair. I had the wide excision done -both surgical Onc and plastic surgeon were there so after the excision they did a skin graft from my thigh and fixed me up. Still a HUGE bald spot since I don’t have hairy thighs but I can cover it very well with my remaining hair ;). Taking action feels better than watch and wait – in my opinion anyway. Good luck to you!
                                                                                            Hstevens0072
                                                                                            Participant
                                                                                              Hi, mine was on my head too, covered by my hair, only vanity had me have someone take a look at it. I thought anyone standing behind me could see it because of the way I wear my hair. I had the wide excision done -both surgical Onc and plastic surgeon were there so after the excision they did a skin graft from my thigh and fixed me up. Still a HUGE bald spot since I don’t have hairy thighs but I can cover it very well with my remaining hair ;). Taking action feels better than watch and wait – in my opinion anyway. Good luck to you!
                                                                                              Hstevens0072
                                                                                              Participant
                                                                                                Hi, mine was on my head too, covered by my hair, only vanity had me have someone take a look at it. I thought anyone standing behind me could see it because of the way I wear my hair. I had the wide excision done -both surgical Onc and plastic surgeon were there so after the excision they did a skin graft from my thigh and fixed me up. Still a HUGE bald spot since I don’t have hairy thighs but I can cover it very well with my remaining hair ;). Taking action feels better than watch and wait – in my opinion anyway. Good luck to you!
                                                                                              _Paul_
                                                                                              Participant

                                                                                                I am a 3a as well, diagnosed on 07/03/12. My primary was smack dab in the middle of the bald spot on the back of my head and the micromet was found in a lymph node in my neck. It turns out the scalp is a tough area to close after a WLE and I was sent home from the hospital under the impression I was all closed up but underneath the tegaderm was a quarter-sized hole. I was referred to an excellent plastic surgeon who managed to close it up but there is still a pretty good size part of my scalp that remains numb. I was offered the CLND but wasn't too keen on the idea of more surgery.

                                                                                                Because of this board I found a clinical trial at Hopkins in Baltimore which I am now enrolled in. If you elect to go this route be patient because there are some administrative hurdles (insurance is the big one) to overcome getting into the trial that can seem challenging at the time, but for me anyway, I just kept pushing it forward without regard to what the insurance outcome was going to be (it turns out that insurance is picking up the tab on those parts of the trial that are not provided by the trial itself–the exams and scans and labwork).

                                                                                                There was also some question at one point about an "enhancement" that showed up on my skull under the site of the primary. I had to wait a few months for a rescan and it turned out to be benign.

                                                                                                In my case I don't really know if the trial will help me (I hope it will, all the research I have done seems to validate what they are trying to accomplish–a vaccine to stimulate my immune system against melanoma). But I just have a hard time with the wait and watch approach. At least this way I feel I am doing something to fight back.

                                                                                                I live in Seattle and fly to Baltimore once a month for the treatment. At first that sounded like a pretty large obstacle but the way I look at it is if this saves my life than the costs of the travel and the time off work are small potatoes.

                                                                                                Like others here I am sorry you are joining our ranks but you have found a really useful resource here in this board!

                                                                                                Take care – Paul.

                                                                                                _Paul_
                                                                                                Participant

                                                                                                  I am a 3a as well, diagnosed on 07/03/12. My primary was smack dab in the middle of the bald spot on the back of my head and the micromet was found in a lymph node in my neck. It turns out the scalp is a tough area to close after a WLE and I was sent home from the hospital under the impression I was all closed up but underneath the tegaderm was a quarter-sized hole. I was referred to an excellent plastic surgeon who managed to close it up but there is still a pretty good size part of my scalp that remains numb. I was offered the CLND but wasn't too keen on the idea of more surgery.

                                                                                                  Because of this board I found a clinical trial at Hopkins in Baltimore which I am now enrolled in. If you elect to go this route be patient because there are some administrative hurdles (insurance is the big one) to overcome getting into the trial that can seem challenging at the time, but for me anyway, I just kept pushing it forward without regard to what the insurance outcome was going to be (it turns out that insurance is picking up the tab on those parts of the trial that are not provided by the trial itself–the exams and scans and labwork).

                                                                                                  There was also some question at one point about an "enhancement" that showed up on my skull under the site of the primary. I had to wait a few months for a rescan and it turned out to be benign.

                                                                                                  In my case I don't really know if the trial will help me (I hope it will, all the research I have done seems to validate what they are trying to accomplish–a vaccine to stimulate my immune system against melanoma). But I just have a hard time with the wait and watch approach. At least this way I feel I am doing something to fight back.

                                                                                                  I live in Seattle and fly to Baltimore once a month for the treatment. At first that sounded like a pretty large obstacle but the way I look at it is if this saves my life than the costs of the travel and the time off work are small potatoes.

                                                                                                  Like others here I am sorry you are joining our ranks but you have found a really useful resource here in this board!

                                                                                                  Take care – Paul.

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                                                                                              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.

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