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I NEED YOUR HELP WITH MY ACRAL NODULAR MELANOMA W/BLOOD DISORDER

Forums General Melanoma Community I NEED YOUR HELP WITH MY ACRAL NODULAR MELANOMA W/BLOOD DISORDER

  • Post
    SOLE
    Participant

      To you all good people, I am strugling still with my followup and I am advocating for myself everywhere I can.

      Still Stage 3b according to brain MRI I had prescribed by my GP! Oncologist wants to CAT scan my groin next February! I think I am being played. Anyway, i will have my chest CAT Scan on Dec. 22nd. Again prescribed by my GP to releive the stress and anxiety I have been experiencing.

      On the blood disorder front, hematologist was really rude last week. My platelet count does not add up to 100k. last September, I scored 66k. I had 20 pounds more on my body then. Now I score about 40k. Hematologist lectured me about lowering my expectations about clinical trials and advised me to set my affairs in order!!!!! Think he forsees that I won't have much choice left come Stage 4. Disorder is being investigated. Not quite a Bernard Soulier syndrome he tells me. On 40mg Decadron for 2 days to shut down my immune system to see if there is a response from my bone marrow…

      And to top this off, I have a bad acral nodular mel that I don't know what to research for anymore. Old statistics are predicting that my chances at 5 years are…… 0%!

      Please, Bubbles, Janner, all of you good people, have you ever been able to enter a trial without meeting all the criterias? 

      Clinical trials on acral nodular melanoma are absent of the picture.

      Do you guys know if my acral nodular will behave like a normal cutaneous one? If so, it's not so bad. I may have a fighting chance. Depends on the mutations I suppose. Could the combo nivo + ipi be of help?

      What sould I be looking for? What types of mutations? I have listed CKIT, NRAS, BRAF, CRAF, PD-1 expression,… What else? I am in the process of seeing Dr. Wolchok at MSK early next year and have him tell me his opinion. I need hope. Desparately.

      You see, I want a fighting chance. My recurrence rate is so high, I want to be prepared and FIGHT! I was thinking of having exome sequencing of my tumour… Could this help? Do you know a place it can be done? Money is no object at this point.

      Do you know of a way, a real real to increase platelet count? Even with a syndrome? I will try with nutrition and also maybe with my too expansive homeopath.

      Please, help… and thank you for your time.

    Viewing 8 reply threads
    • Replies
        SOLE
        Participant

          Also, Maureen?

          I read your journey and I send you a personal email. I know you went to MSK and the decision to have the breast cancer treatment because of the rare her-2 mutation lead me to decide to go to Dr. Wolchok. He's a brillant mind. And he has a whole research team behind him. I truly hope he can help me…

            Maureen038
            Participant

              I'm sorry I never received your email or I would have written back. As you have read my husband's history I won't repeat it. His melanoma was ulcerated and thick on his big toe. We were told at the time of being stage 3b he had a high risk for becoming stage 4 because of those factors. He became stage 4 after about 4 months. After that, we became very aggressive and tried to have melanoma specialists that thought outside of the box. We went and saw at least six specialists to figure out which treatment to do. MSK was terrific! He has Kadcyla infusions every three weeks and we just had another great scan!! His liver enzymes are high and his spleen is slightly enlarged,but he's doing well right now. I believe he's the first patient to be treated with this drug for melanoma. We originally had to pay $7000 for each infusion because there was no trial at the time and the drug is not FDA approved for melanoma.The insurance is now paying for it and they gave us back the money we had paid. My email is [email protected]. Please feel free to write anytime and you can even talk to my husband too. 

              Maureen

              PS I'm in contact with a patient who also has stage 3 ALM. She has been NED for almost 10 years!!  You might be just like her. Take it one day at a time!! 

              Maureen038
              Participant

                I'm sorry I never received your email or I would have written back. As you have read my husband's history I won't repeat it. His melanoma was ulcerated and thick on his big toe. We were told at the time of being stage 3b he had a high risk for becoming stage 4 because of those factors. He became stage 4 after about 4 months. After that, we became very aggressive and tried to have melanoma specialists that thought outside of the box. We went and saw at least six specialists to figure out which treatment to do. MSK was terrific! He has Kadcyla infusions every three weeks and we just had another great scan!! His liver enzymes are high and his spleen is slightly enlarged,but he's doing well right now. I believe he's the first patient to be treated with this drug for melanoma. We originally had to pay $7000 for each infusion because there was no trial at the time and the drug is not FDA approved for melanoma.The insurance is now paying for it and they gave us back the money we had paid. My email is [email protected]. Please feel free to write anytime and you can even talk to my husband too. 

                Maureen

                PS I'm in contact with a patient who also has stage 3 ALM. She has been NED for almost 10 years!!  You might be just like her. Take it one day at a time!! 

                Maureen038
                Participant

                  I'm sorry I never received your email or I would have written back. As you have read my husband's history I won't repeat it. His melanoma was ulcerated and thick on his big toe. We were told at the time of being stage 3b he had a high risk for becoming stage 4 because of those factors. He became stage 4 after about 4 months. After that, we became very aggressive and tried to have melanoma specialists that thought outside of the box. We went and saw at least six specialists to figure out which treatment to do. MSK was terrific! He has Kadcyla infusions every three weeks and we just had another great scan!! His liver enzymes are high and his spleen is slightly enlarged,but he's doing well right now. I believe he's the first patient to be treated with this drug for melanoma. We originally had to pay $7000 for each infusion because there was no trial at the time and the drug is not FDA approved for melanoma.The insurance is now paying for it and they gave us back the money we had paid. My email is [email protected]. Please feel free to write anytime and you can even talk to my husband too. 

                  Maureen

                  PS I'm in contact with a patient who also has stage 3 ALM. She has been NED for almost 10 years!!  You might be just like her. Take it one day at a time!! 

                  SOLE
                  Participant

                    Thank you Maureen

                    I have send you an email again

                    In your talks with the specialists, which was the most open minded? Because of my low platelet condition I don't qualify ANYWHERE. It freaks me out because this is the sure path to death…

                    Here's what my ultimate plan is:

                    Find a place (NIH, NYLangone, MD Anderson or what ever you or others may suggest), a willing Doctor and pay out myself for a complete TIL therapy with the addition of a PD-1 and dendritic cell vaccine sort of treatment. Maybe add another drug that could target another important gene mutation in my acral melanoma.

                    Do you think it's at all feasible? Do you have an idea who could be the right fit for my plan?

                    Remember I am a Canadian citizen, thus international patient…

                    My heart goes out to Paul and Josh at the moment.

                     

                    jennunicorn
                    Participant
                      NED

                      You need to have tumors to get TIL therapy… you are NED… so, keep this idea in mind if you ever need it, but for now, you will not be able to try that route. It's also around $500,000 without US insurance..

                      SOLE
                      Participant

                        I have heard Dr Jeffrey from Langone say the TIL therapy is less than 100k. I guess I'll find out when I meet with Wolchok.

                        I am also well aware that I need a tumour for that. All I'm doing at the moment is preparing for the fight.

                        I feel pains in my lungs both in front and back since about a week now. Scan is on dec 22nd. Will know more in the new year.

                        SOLE
                        Participant

                          I have heard Dr Jeffrey from Langone say the TIL therapy is less than 100k. I guess I'll find out when I meet with Wolchok.

                          I am also well aware that I need a tumour for that. All I'm doing at the moment is preparing for the fight.

                          I feel pains in my lungs both in front and back since about a week now. Scan is on dec 22nd. Will know more in the new year.

                          SOLE
                          Participant

                            I have heard Dr Jeffrey from Langone say the TIL therapy is less than 100k. I guess I'll find out when I meet with Wolchok.

                            I am also well aware that I need a tumour for that. All I'm doing at the moment is preparing for the fight.

                            I feel pains in my lungs both in front and back since about a week now. Scan is on dec 22nd. Will know more in the new year.

                            jennunicorn
                            Participant
                              NED

                              You need to have tumors to get TIL therapy… you are NED… so, keep this idea in mind if you ever need it, but for now, you will not be able to try that route. It's also around $500,000 without US insurance..

                              jennunicorn
                              Participant
                                NED

                                You need to have tumors to get TIL therapy… you are NED… so, keep this idea in mind if you ever need it, but for now, you will not be able to try that route. It's also around $500,000 without US insurance..

                                _Paul_
                                Participant

                                  Unfortunately Anon is correct. You need a tumor that can be harvested. It needs to have been infiltrated by some of your body's TIL cells. They take that to the lab and extract the TIL from the tumor and then grow many billions more. That is what gets re-infused after your existing lymphocytes have been depleted with a week of chemo.

                                  _Paul_
                                  Participant

                                    Unfortunately Anon is correct. You need a tumor that can be harvested. It needs to have been infiltrated by some of your body's TIL cells. They take that to the lab and extract the TIL from the tumor and then grow many billions more. That is what gets re-infused after your existing lymphocytes have been depleted with a week of chemo.

                                    _Paul_
                                    Participant

                                      Unfortunately Anon is correct. You need a tumor that can be harvested. It needs to have been infiltrated by some of your body's TIL cells. They take that to the lab and extract the TIL from the tumor and then grow many billions more. That is what gets re-infused after your existing lymphocytes have been depleted with a week of chemo.

                                      SOLE
                                      Participant

                                        Thank you Maureen

                                        I have send you an email again

                                        In your talks with the specialists, which was the most open minded? Because of my low platelet condition I don't qualify ANYWHERE. It freaks me out because this is the sure path to death…

                                        Here's what my ultimate plan is:

                                        Find a place (NIH, NYLangone, MD Anderson or what ever you or others may suggest), a willing Doctor and pay out myself for a complete TIL therapy with the addition of a PD-1 and dendritic cell vaccine sort of treatment. Maybe add another drug that could target another important gene mutation in my acral melanoma.

                                        Do you think it's at all feasible? Do you have an idea who could be the right fit for my plan?

                                        Remember I am a Canadian citizen, thus international patient…

                                        My heart goes out to Paul and Josh at the moment.

                                         

                                        SOLE
                                        Participant

                                          Thank you Maureen

                                          I have send you an email again

                                          In your talks with the specialists, which was the most open minded? Because of my low platelet condition I don't qualify ANYWHERE. It freaks me out because this is the sure path to death…

                                          Here's what my ultimate plan is:

                                          Find a place (NIH, NYLangone, MD Anderson or what ever you or others may suggest), a willing Doctor and pay out myself for a complete TIL therapy with the addition of a PD-1 and dendritic cell vaccine sort of treatment. Maybe add another drug that could target another important gene mutation in my acral melanoma.

                                          Do you think it's at all feasible? Do you have an idea who could be the right fit for my plan?

                                          Remember I am a Canadian citizen, thus international patient…

                                          My heart goes out to Paul and Josh at the moment.

                                           

                                        SOLE
                                        Participant

                                          Also, Maureen?

                                          I read your journey and I send you a personal email. I know you went to MSK and the decision to have the breast cancer treatment because of the rare her-2 mutation lead me to decide to go to Dr. Wolchok. He's a brillant mind. And he has a whole research team behind him. I truly hope he can help me…

                                          SOLE
                                          Participant

                                            Also, Maureen?

                                            I read your journey and I send you a personal email. I know you went to MSK and the decision to have the breast cancer treatment because of the rare her-2 mutation lead me to decide to go to Dr. Wolchok. He's a brillant mind. And he has a whole research team behind him. I truly hope he can help me…

                                            Bubbles
                                            Participant

                                              Sole,

                                              As I recall, you are NED.  There are not going to be many trials available for NED folks.  Unfortunate, but true.  I didn't realize that you had actually been diagnosed as having acral melanoma, but if that is the case, it would be especially important to know your BRAF, KIT and NRAS status.  (NRAS being a mutation somewhat more common in folks with acral melanoma.)  But, you pretty much have everything covered.  Here is a post with a nice break down of mutations per melanoma type:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html

                                              Clinical trials are very particular (I have been in one) regarding all aspects with little to no flexibility.  The inclusion and exclusion criteria are listed very clearly.  If you follow this link: https://clinicaltrials.gov/ct2/results?term=acral+melanoma&Search=Search

                                              …you should find all the trials that are current via Clinicaltrials.gov for acral melanoma…..as those are the words I typed in to search for.  You will see some are recruiting, some are complete, some have yet to begin.  If you scroll down each one you will see the inclusion and exclusion criteria that I mentioned as well as location, etc.  You can also search for trials available for "Stage IIIb melanoma", "NED (or the word adjuvant may be better) melanoma", etc.

                                              Now…this is for the most part for the US.  I realize that you live in Canada.  That does not mean you are out of luck.  You can call the clnical trial coordinator for any trial you are interested in….find out about your personal participation and all locations where the trial or similar treatments are ongoing.

                                              I am not clear as to why you think your recurrence rate is "so high" as that is something that is very unpredictable, in all Stage III melanoma folks.  However, I completely understand wanting to be proactive.  Seeing Dr. Wolchok should be helpful.  He is an incredibly bright and well respected oncologist and researcher in the world of melanoma. 

                                              Perhaps some of this will be helpful.  I wish you well.  Celeste

                                               

                                                ed williams
                                                Participant

                                                  Hi Celeste, I was looking for this video with Weber today and was sad to see that Omedlive doesn't run it any longer. It had been one of my favorites for explaining IRAE'S. Best Wishes!!!!Ed

                                                  Bubbles
                                                  Participant

                                                    True (and that is a real loss)….but….  My notes from the video remain!!!!!  c

                                                    Bubbles
                                                    Participant

                                                      True (and that is a real loss)….but….  My notes from the video remain!!!!!  c

                                                      Bubbles
                                                      Participant

                                                        True (and that is a real loss)….but….  My notes from the video remain!!!!!  c

                                                        ed williams
                                                        Participant

                                                          Hi Celeste, I was looking for this video with Weber today and was sad to see that Omedlive doesn't run it any longer. It had been one of my favorites for explaining IRAE'S. Best Wishes!!!!Ed

                                                          ed williams
                                                          Participant

                                                            Hi Celeste, I was looking for this video with Weber today and was sad to see that Omedlive doesn't run it any longer. It had been one of my favorites for explaining IRAE'S. Best Wishes!!!!Ed

                                                            SOLE
                                                            Participant

                                                              Celeste,

                                                              I understand that clinical trials are very strict as I have called a few coordinators already. I am so limited because of my condition that my medical team is really suggesting (between the lines) I don't have much chance of getting myself out of there, if I recur. And they pretty much gave me the odd look when I asked about my recurrence rate. Remember, Breslow of at least 2.85mm, Clark at least 4, mitoses at least 4mm2. They think that my tumor was over 4mm… I remember the derm telling me he cleaned the wound in depth as best he could, meaning he did not get to the bottom of it with his scalpel. And I read a very well laid out paper today with plantar regions and their associated burden and p factor. It is a 1993 study of acral mels in asian population. It is an aggregate of other rather ancient studies dating back to 1980s and before but still its the only thorough study on acral mels of all types: superficial, lentigous and nodular. Mine is the worst of the three. (I'll post the link). It is of course before the advent of the new drugs. But in an another study, they reported that the ORR of acral mels is substiantially lower than cutaneous. They reported that the biology of the skin is completely different from the rest of the body, hence the low RR. I was couting on the new combo to help me at 60% but it will be lower. I know I am stage 3b. At least my brain is since today. Hoping my abdomen and organs will follow on dec. 22.

                                                              Listen, I plan to have a complete genomic testing when I go to MSK in january. At least I'll know how my tumour stands. There is also bi-57 or something… I forget. Is that relevant too?

                                                              And as far as known genes, I hope I am Braf instead of ckit. That could save me. I was looking at TIL treatment to eventually assist me if I'm in trouble. I need to get to 100k platelets… F?!$6(!

                                                              Any suggestions? Hematologist told me to lower my expectations and choose quality of life instead of…? Quantity!!! Assh{}<>!!

                                                              I need to stay alert and focused. I need to have all the tools available in my toolbox despite the lower rate of response. Maureen's husband (acral lentigous) was able to shrunk lung mets with nivo (following an incomplete TIL treatment.)

                                                              I know, I'm not living the present! I am just beginning to cope with the diagnostic. And I thank you for your patience with me, Celeste.

                                                              Will post the studies later. Scary numbers in there…

                                                              Bubbles
                                                              Participant

                                                                Sadly, acral melanoma has been studied and it is a bigger bear to attack than cutaneous melanoma.  I hate to tell you that…but you seem to realize that already.  However, I don't think that recurrence is substantialy different, apart from the points you noted.  Here are two posts that tell you that while acral responses to anti-PD1 are less than those in cutaneous mel…they DO exist:

                                                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/anti-pd-1-and-anti-pd-l1-treatments.html

                                                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-anti-pd1-for-acral-and.html

                                                                SO, you DO have anti-PD1 as an option should it come to that.  I am also in correspondence with two folks with similar types of melanoma who are doing very well, currently, on a combo of anti-PD1 with urelumab.  So…..meet with Wolchok.  Keep yourself well informed of your choices.  New discoveries and combo's are being utilized daily.  You are NED!!!!!!!!!!!!!!  You may remain that way for many, many years.  You may not….but….   Until things are different….you remain NED.  When you aren't…..you do have options.  Conventional ones…as well as ones that ratties are proving valid everyday. 

                                                                Try to remember to breathe.  I told you once, that each day we DO have is a day….nonetheless.  Not easy, I realize.  However, I have been in this world a long time.  I know I am very lucky to be able to say that.  But, I can assure you that the dear ones I have lost would tell you not to waste a minute.  Use your minutes to learn and prepare for what you need.  But, never fail to appreciate the minutes you have…today.

                                                                yours, celeste

                                                                Bubbles
                                                                Participant

                                                                  Sadly, acral melanoma has been studied and it is a bigger bear to attack than cutaneous melanoma.  I hate to tell you that…but you seem to realize that already.  However, I don't think that recurrence is substantialy different, apart from the points you noted.  Here are two posts that tell you that while acral responses to anti-PD1 are less than those in cutaneous mel…they DO exist:

                                                                  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/anti-pd-1-and-anti-pd-l1-treatments.html

                                                                  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-anti-pd1-for-acral-and.html

                                                                  SO, you DO have anti-PD1 as an option should it come to that.  I am also in correspondence with two folks with similar types of melanoma who are doing very well, currently, on a combo of anti-PD1 with urelumab.  So…..meet with Wolchok.  Keep yourself well informed of your choices.  New discoveries and combo's are being utilized daily.  You are NED!!!!!!!!!!!!!!  You may remain that way for many, many years.  You may not….but….   Until things are different….you remain NED.  When you aren't…..you do have options.  Conventional ones…as well as ones that ratties are proving valid everyday. 

                                                                  Try to remember to breathe.  I told you once, that each day we DO have is a day….nonetheless.  Not easy, I realize.  However, I have been in this world a long time.  I know I am very lucky to be able to say that.  But, I can assure you that the dear ones I have lost would tell you not to waste a minute.  Use your minutes to learn and prepare for what you need.  But, never fail to appreciate the minutes you have…today.

                                                                  yours, celeste

                                                                  Bubbles
                                                                  Participant

                                                                    Sadly, acral melanoma has been studied and it is a bigger bear to attack than cutaneous melanoma.  I hate to tell you that…but you seem to realize that already.  However, I don't think that recurrence is substantialy different, apart from the points you noted.  Here are two posts that tell you that while acral responses to anti-PD1 are less than those in cutaneous mel…they DO exist:

                                                                    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/anti-pd-1-and-anti-pd-l1-treatments.html

                                                                    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-anti-pd1-for-acral-and.html

                                                                    SO, you DO have anti-PD1 as an option should it come to that.  I am also in correspondence with two folks with similar types of melanoma who are doing very well, currently, on a combo of anti-PD1 with urelumab.  So…..meet with Wolchok.  Keep yourself well informed of your choices.  New discoveries and combo's are being utilized daily.  You are NED!!!!!!!!!!!!!!  You may remain that way for many, many years.  You may not….but….   Until things are different….you remain NED.  When you aren't…..you do have options.  Conventional ones…as well as ones that ratties are proving valid everyday. 

                                                                    Try to remember to breathe.  I told you once, that each day we DO have is a day….nonetheless.  Not easy, I realize.  However, I have been in this world a long time.  I know I am very lucky to be able to say that.  But, I can assure you that the dear ones I have lost would tell you not to waste a minute.  Use your minutes to learn and prepare for what you need.  But, never fail to appreciate the minutes you have…today.

                                                                    yours, celeste

                                                                    SOLE
                                                                    Participant

                                                                      Oh! And I forgot, my initial tumor was ULCERATED too… Prognostic is bleak for recurrence in my case. I am textbook I think. 

                                                                      Bubbles
                                                                      Participant

                                                                        Yes, Sole.  You may forget, but I remember.  I am weird like that.  I know.  No….some of your tumor's characteristics are not good.  I am sorry for that.  But….you are still here….NED…today.  Try to remember that when you are down.  c

                                                                        Bubbles
                                                                        Participant

                                                                          Yes, Sole.  You may forget, but I remember.  I am weird like that.  I know.  No….some of your tumor's characteristics are not good.  I am sorry for that.  But….you are still here….NED…today.  Try to remember that when you are down.  c

                                                                          Bubbles
                                                                          Participant

                                                                            Yes, Sole.  You may forget, but I remember.  I am weird like that.  I know.  No….some of your tumor's characteristics are not good.  I am sorry for that.  But….you are still here….NED…today.  Try to remember that when you are down.  c

                                                                            SOLE
                                                                            Participant

                                                                              Oh! And I forgot, my initial tumor was ULCERATED too… Prognostic is bleak for recurrence in my case. I am textbook I think. 

                                                                              SOLE
                                                                              Participant

                                                                                Oh! And I forgot, my initial tumor was ULCERATED too… Prognostic is bleak for recurrence in my case. I am textbook I think. 

                                                                                SOLE
                                                                                Participant

                                                                                  Celeste,

                                                                                  I understand that clinical trials are very strict as I have called a few coordinators already. I am so limited because of my condition that my medical team is really suggesting (between the lines) I don't have much chance of getting myself out of there, if I recur. And they pretty much gave me the odd look when I asked about my recurrence rate. Remember, Breslow of at least 2.85mm, Clark at least 4, mitoses at least 4mm2. They think that my tumor was over 4mm… I remember the derm telling me he cleaned the wound in depth as best he could, meaning he did not get to the bottom of it with his scalpel. And I read a very well laid out paper today with plantar regions and their associated burden and p factor. It is a 1993 study of acral mels in asian population. It is an aggregate of other rather ancient studies dating back to 1980s and before but still its the only thorough study on acral mels of all types: superficial, lentigous and nodular. Mine is the worst of the three. (I'll post the link). It is of course before the advent of the new drugs. But in an another study, they reported that the ORR of acral mels is substiantially lower than cutaneous. They reported that the biology of the skin is completely different from the rest of the body, hence the low RR. I was couting on the new combo to help me at 60% but it will be lower. I know I am stage 3b. At least my brain is since today. Hoping my abdomen and organs will follow on dec. 22.

                                                                                  Listen, I plan to have a complete genomic testing when I go to MSK in january. At least I'll know how my tumour stands. There is also bi-57 or something… I forget. Is that relevant too?

                                                                                  And as far as known genes, I hope I am Braf instead of ckit. That could save me. I was looking at TIL treatment to eventually assist me if I'm in trouble. I need to get to 100k platelets… F?!$6(!

                                                                                  Any suggestions? Hematologist told me to lower my expectations and choose quality of life instead of…? Quantity!!! Assh{}<>!!

                                                                                  I need to stay alert and focused. I need to have all the tools available in my toolbox despite the lower rate of response. Maureen's husband (acral lentigous) was able to shrunk lung mets with nivo (following an incomplete TIL treatment.)

                                                                                  I know, I'm not living the present! I am just beginning to cope with the diagnostic. And I thank you for your patience with me, Celeste.

                                                                                  Will post the studies later. Scary numbers in there…

                                                                                  SOLE
                                                                                  Participant

                                                                                    Celeste,

                                                                                    I understand that clinical trials are very strict as I have called a few coordinators already. I am so limited because of my condition that my medical team is really suggesting (between the lines) I don't have much chance of getting myself out of there, if I recur. And they pretty much gave me the odd look when I asked about my recurrence rate. Remember, Breslow of at least 2.85mm, Clark at least 4, mitoses at least 4mm2. They think that my tumor was over 4mm… I remember the derm telling me he cleaned the wound in depth as best he could, meaning he did not get to the bottom of it with his scalpel. And I read a very well laid out paper today with plantar regions and their associated burden and p factor. It is a 1993 study of acral mels in asian population. It is an aggregate of other rather ancient studies dating back to 1980s and before but still its the only thorough study on acral mels of all types: superficial, lentigous and nodular. Mine is the worst of the three. (I'll post the link). It is of course before the advent of the new drugs. But in an another study, they reported that the ORR of acral mels is substiantially lower than cutaneous. They reported that the biology of the skin is completely different from the rest of the body, hence the low RR. I was couting on the new combo to help me at 60% but it will be lower. I know I am stage 3b. At least my brain is since today. Hoping my abdomen and organs will follow on dec. 22.

                                                                                    Listen, I plan to have a complete genomic testing when I go to MSK in january. At least I'll know how my tumour stands. There is also bi-57 or something… I forget. Is that relevant too?

                                                                                    And as far as known genes, I hope I am Braf instead of ckit. That could save me. I was looking at TIL treatment to eventually assist me if I'm in trouble. I need to get to 100k platelets… F?!$6(!

                                                                                    Any suggestions? Hematologist told me to lower my expectations and choose quality of life instead of…? Quantity!!! Assh{}<>!!

                                                                                    I need to stay alert and focused. I need to have all the tools available in my toolbox despite the lower rate of response. Maureen's husband (acral lentigous) was able to shrunk lung mets with nivo (following an incomplete TIL treatment.)

                                                                                    I know, I'm not living the present! I am just beginning to cope with the diagnostic. And I thank you for your patience with me, Celeste.

                                                                                    Will post the studies later. Scary numbers in there…

                                                                                  Bubbles
                                                                                  Participant

                                                                                    Sole,

                                                                                    As I recall, you are NED.  There are not going to be many trials available for NED folks.  Unfortunate, but true.  I didn't realize that you had actually been diagnosed as having acral melanoma, but if that is the case, it would be especially important to know your BRAF, KIT and NRAS status.  (NRAS being a mutation somewhat more common in folks with acral melanoma.)  But, you pretty much have everything covered.  Here is a post with a nice break down of mutations per melanoma type:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html

                                                                                    Clinical trials are very particular (I have been in one) regarding all aspects with little to no flexibility.  The inclusion and exclusion criteria are listed very clearly.  If you follow this link: https://clinicaltrials.gov/ct2/results?term=acral+melanoma&Search=Search

                                                                                    …you should find all the trials that are current via Clinicaltrials.gov for acral melanoma…..as those are the words I typed in to search for.  You will see some are recruiting, some are complete, some have yet to begin.  If you scroll down each one you will see the inclusion and exclusion criteria that I mentioned as well as location, etc.  You can also search for trials available for "Stage IIIb melanoma", "NED (or the word adjuvant may be better) melanoma", etc.

                                                                                    Now…this is for the most part for the US.  I realize that you live in Canada.  That does not mean you are out of luck.  You can call the clnical trial coordinator for any trial you are interested in….find out about your personal participation and all locations where the trial or similar treatments are ongoing.

                                                                                    I am not clear as to why you think your recurrence rate is "so high" as that is something that is very unpredictable, in all Stage III melanoma folks.  However, I completely understand wanting to be proactive.  Seeing Dr. Wolchok should be helpful.  He is an incredibly bright and well respected oncologist and researcher in the world of melanoma. 

                                                                                    Perhaps some of this will be helpful.  I wish you well.  Celeste

                                                                                     

                                                                                    Bubbles
                                                                                    Participant

                                                                                      Sole,

                                                                                      As I recall, you are NED.  There are not going to be many trials available for NED folks.  Unfortunate, but true.  I didn't realize that you had actually been diagnosed as having acral melanoma, but if that is the case, it would be especially important to know your BRAF, KIT and NRAS status.  (NRAS being a mutation somewhat more common in folks with acral melanoma.)  But, you pretty much have everything covered.  Here is a post with a nice break down of mutations per melanoma type:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html

                                                                                      Clinical trials are very particular (I have been in one) regarding all aspects with little to no flexibility.  The inclusion and exclusion criteria are listed very clearly.  If you follow this link: https://clinicaltrials.gov/ct2/results?term=acral+melanoma&Search=Search

                                                                                      …you should find all the trials that are current via Clinicaltrials.gov for acral melanoma…..as those are the words I typed in to search for.  You will see some are recruiting, some are complete, some have yet to begin.  If you scroll down each one you will see the inclusion and exclusion criteria that I mentioned as well as location, etc.  You can also search for trials available for "Stage IIIb melanoma", "NED (or the word adjuvant may be better) melanoma", etc.

                                                                                      Now…this is for the most part for the US.  I realize that you live in Canada.  That does not mean you are out of luck.  You can call the clnical trial coordinator for any trial you are interested in….find out about your personal participation and all locations where the trial or similar treatments are ongoing.

                                                                                      I am not clear as to why you think your recurrence rate is "so high" as that is something that is very unpredictable, in all Stage III melanoma folks.  However, I completely understand wanting to be proactive.  Seeing Dr. Wolchok should be helpful.  He is an incredibly bright and well respected oncologist and researcher in the world of melanoma. 

                                                                                      Perhaps some of this will be helpful.  I wish you well.  Celeste

                                                                                       

                                                                                      Janner
                                                                                      Participant

                                                                                        Haven't read the other replies, I will later.

                                                                                        I can only say that trials are pretty particular that you meet criteria.  Basically, if you don't meet the criteria, they cannot use your data in the study.  That doesn't help the drug companies at all.  In some cases, they can give drugs/treatments "off protocol", but there is rarely any incentive to do that.  (My background in trials comes from medical devices, not drugs).  More typically that might happen if you are already included in a trial but some numbers just go out of range enough to exclude you.  Now if there are no specific exclusions for your condition, it may be a judgement call that will have to be vetted. 

                                                                                        I can't comment on the differences in acral vs cutaneous on these treatments because I doubt it has been studied enough to come up with statistically significant results.  These treatments are all new.

                                                                                          SOLE
                                                                                          Participant

                                                                                            Read the links I'll post later of the two studies I found.

                                                                                            There is apparently known evidence of lower response rate in plantar mels. It's just another possible hurdle for me and quite frankly, I was beginning to be a bit more hopeful and now this… But by having a genome test of tumours, MSK will eventually be able to direct me to the right drug strategy (even maybe outside of the known melanoma world, just like Maureen's TDIC and breast cancer drug that made her husband NED)

                                                                                            SOLE
                                                                                            Participant

                                                                                              Read the links I'll post later of the two studies I found.

                                                                                              There is apparently known evidence of lower response rate in plantar mels. It's just another possible hurdle for me and quite frankly, I was beginning to be a bit more hopeful and now this… But by having a genome test of tumours, MSK will eventually be able to direct me to the right drug strategy (even maybe outside of the known melanoma world, just like Maureen's TDIC and breast cancer drug that made her husband NED)

                                                                                              SOLE
                                                                                              Participant

                                                                                                Read the links I'll post later of the two studies I found.

                                                                                                There is apparently known evidence of lower response rate in plantar mels. It's just another possible hurdle for me and quite frankly, I was beginning to be a bit more hopeful and now this… But by having a genome test of tumours, MSK will eventually be able to direct me to the right drug strategy (even maybe outside of the known melanoma world, just like Maureen's TDIC and breast cancer drug that made her husband NED)

                                                                                                SOLE
                                                                                                Participant

                                                                                                  And thank you for chiming in as usual…

                                                                                                  Hugs

                                                                                                  xxx

                                                                                                  SOLE
                                                                                                  Participant

                                                                                                    And thank you for chiming in as usual…

                                                                                                    Hugs

                                                                                                    xxx

                                                                                                    SOLE
                                                                                                    Participant

                                                                                                      And thank you for chiming in as usual…

                                                                                                      Hugs

                                                                                                      xxx

                                                                                                    Janner
                                                                                                    Participant

                                                                                                      Haven't read the other replies, I will later.

                                                                                                      I can only say that trials are pretty particular that you meet criteria.  Basically, if you don't meet the criteria, they cannot use your data in the study.  That doesn't help the drug companies at all.  In some cases, they can give drugs/treatments "off protocol", but there is rarely any incentive to do that.  (My background in trials comes from medical devices, not drugs).  More typically that might happen if you are already included in a trial but some numbers just go out of range enough to exclude you.  Now if there are no specific exclusions for your condition, it may be a judgement call that will have to be vetted. 

                                                                                                      I can't comment on the differences in acral vs cutaneous on these treatments because I doubt it has been studied enough to come up with statistically significant results.  These treatments are all new.

                                                                                                      Janner
                                                                                                      Participant

                                                                                                        Haven't read the other replies, I will later.

                                                                                                        I can only say that trials are pretty particular that you meet criteria.  Basically, if you don't meet the criteria, they cannot use your data in the study.  That doesn't help the drug companies at all.  In some cases, they can give drugs/treatments "off protocol", but there is rarely any incentive to do that.  (My background in trials comes from medical devices, not drugs).  More typically that might happen if you are already included in a trial but some numbers just go out of range enough to exclude you.  Now if there are no specific exclusions for your condition, it may be a judgement call that will have to be vetted. 

                                                                                                        I can't comment on the differences in acral vs cutaneous on these treatments because I doubt it has been studied enough to come up with statistically significant results.  These treatments are all new.

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