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Nal64

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      Nal64
      Participant

        Josh brings so much  to the message board and has always been the person I look to here for info on  the rare "desmoplastic mel"  diagnosis. We use the same doctors and he has always been just a step ahead of us in treatment (my husband is stage IV).  When I couldn't find him on the message boards anymore I got scared and somewhat stalker-y.  I was able to locate his brother who had set up a go fund me page for Josh.  I sent him an email inquiring about Josh and got this reply:   

        Hi, Nancy
        I was with josh last night and read your email to him he was touched! My brother is fighting he was put on hospice two weeks ago. They have stopped treatments and now the hard part . Josh is a wonderful person and has done so many good things in his life. 
        He served his country in the Marines he is an amazing father , husband and the best big brother anyone could ask for. There will be a special place in heaven for him. He has touched so many on his journey. We pray for your family and for your husband to heal. God bless and thank you for reaching out it mean a lot.
        Mike

        I know many were wondering about him and I tried to convey how important Josh is to us all.  Keep his family in your thoughts and prayers as they go down the road none of us wish we were traveling. 

        Nal64
        Participant

          My husband (stage IV since 2014) also had heart pain after receiving ipi followed by a year of keytruda. His heart would start beating erratically, eventually fall into v-tach and would then stabilize itself with a few normal beats before doing it all over again. He was hospitalized twice for it. The first time they performed an MRI of the heart ( we had to fight to get this done ) and did not see any tumors around or on his heart. They did a cardiac ablation on a spot they felt showed some unusual activity. This surgery didn't help but the flecinide he was prescribed did. Several docs were consulted to determine if this was caused by the keytruda. He had had a rash, headache and extremely low cortisol levels before these episodes but they all ruled out Keytruda as the source. My belief is that they all connect somehow. His immune system was definitely attacking his adrenal glands and pituitary and  from what I have read both of these organs help your heart regulate itself. Low dose replacement steroids have also been added to his regimen and help immensely.   I should also mention that he is a normal weight and works out about 5 hrs/week.  He had no previous heart conditions. Best wishes on getting your pain under control 

          Nal64
          Participant

            We had a similar experience while my husband was in the hospital after resection. They tried to double dose OxyContin twice and put him on an unordered morphine pump which was removed a few hours later. Luckly we asked what he was getting because everyone seemed to be coming in with pills at all hours and the nursing/ interns/residents/ nurse assistants were constantly changing.  We got out of there as fast as they would allow! When our dr. Didn't follow up with us the week following surgery I sent an email detailing what went on in the hospital and our disappointment in his lack of communication. 

            Good news: our relationship is much stronger then before. He answers all emails within 24 hours and advocates on our behalf to the insurance company. He asked to share the email with the nursing staff (I did name some people specifically, but not many …..and I feel guilty for naming them)  but the doc reminded me that this is a teaching hospital and staff cannot get better if they don't know where to improve.  There were several checklists in the computer, scans of his bracelet and standard paper charts but things still got missed.

            Tell your doctor your concerns, you should never have to feel uncomfortable in this journey! We have to deal with enough stress as it is! You don't have to tell him everything, but maybe send an email telling him you would feel more comfortable meeting one on one to discuss your case, then he would be the one writing the orders instead of the nurse.

            Good luck!

            -N

            Nal64
            Participant

              We had a similar experience while my husband was in the hospital after resection. They tried to double dose OxyContin twice and put him on an unordered morphine pump which was removed a few hours later. Luckly we asked what he was getting because everyone seemed to be coming in with pills at all hours and the nursing/ interns/residents/ nurse assistants were constantly changing.  We got out of there as fast as they would allow! When our dr. Didn't follow up with us the week following surgery I sent an email detailing what went on in the hospital and our disappointment in his lack of communication. 

              Good news: our relationship is much stronger then before. He answers all emails within 24 hours and advocates on our behalf to the insurance company. He asked to share the email with the nursing staff (I did name some people specifically, but not many …..and I feel guilty for naming them)  but the doc reminded me that this is a teaching hospital and staff cannot get better if they don't know where to improve.  There were several checklists in the computer, scans of his bracelet and standard paper charts but things still got missed.

              Tell your doctor your concerns, you should never have to feel uncomfortable in this journey! We have to deal with enough stress as it is! You don't have to tell him everything, but maybe send an email telling him you would feel more comfortable meeting one on one to discuss your case, then he would be the one writing the orders instead of the nurse.

              Good luck!

              -N

              Nal64
              Participant

                We had a similar experience while my husband was in the hospital after resection. They tried to double dose OxyContin twice and put him on an unordered morphine pump which was removed a few hours later. Luckly we asked what he was getting because everyone seemed to be coming in with pills at all hours and the nursing/ interns/residents/ nurse assistants were constantly changing.  We got out of there as fast as they would allow! When our dr. Didn't follow up with us the week following surgery I sent an email detailing what went on in the hospital and our disappointment in his lack of communication. 

                Good news: our relationship is much stronger then before. He answers all emails within 24 hours and advocates on our behalf to the insurance company. He asked to share the email with the nursing staff (I did name some people specifically, but not many …..and I feel guilty for naming them)  but the doc reminded me that this is a teaching hospital and staff cannot get better if they don't know where to improve.  There were several checklists in the computer, scans of his bracelet and standard paper charts but things still got missed.

                Tell your doctor your concerns, you should never have to feel uncomfortable in this journey! We have to deal with enough stress as it is! You don't have to tell him everything, but maybe send an email telling him you would feel more comfortable meeting one on one to discuss your case, then he would be the one writing the orders instead of the nurse.

                Good luck!

                -N

                Nal64
                Participant

                  I just found this study on an old thread, wondering if this could be what we are experiencing? I'm going to look into it further and look up the docs responsible for the study to see if I can contact them. It's so amazing the amount of support and knowledge I have gained in the last 24 hours. Thank you all so much!

                  2009 update says:
                   
                   
                  Abstract
                  BACKGROUND:
                  Solitary dermal melanoma (SDM) is confined to the dermal and/or subcutaneous tissue without an epidermal component. It is unclear whether this lesion is a subtype of primary melanoma or distant cutaneous metastasis from an unknown primary. We evaluated our large experience to determine the prognosis and optimal management of SDM.
                   
                  METHODS:
                   
                  Our melanoma referral center's database of prospectively acquired records was used for identification and clinicopathologic analysis of patients presenting with SDM between 1971 and 2005.
                   
                  RESULTS:
                   
                  Of 12,817 database patients seen during a 34-year period, 101 (0.8%) had SDM. Of 92 patients free of distant metastasis on initial presentation, 55 (60%) were observed and 37 (40%) underwent surgical nodal staging: regional metastases were identified in 7 (19%). Nodal recurrence occurred in 1 of 30 patients (3.3%) with histopathology-negative nodes compared with 13 of 55 patients (24%) who underwent nodal observation instead of nodal staging. Thus, 21 of 92 patients (23%) had nodal metastasis identified during surgical nodal staging or postoperative nodal observation. At a median follow-up of 68 months, estimated 5-year overall survival rate was 73% for 71 patients with localized disease versus 67% for 21 patients with regional disease (P=0.25) versus 22% for 9 patients with distant disease (P=0.009, regional versus distant disease).
                   
                  CONCLUSIONS:
                   
                  SDM resembles intermediate-thickness primary cutaneous melanoma with respect to prognostic characteristics and clinical evolution, but its rate of distant metastasis justifies radiographic staging and its high rate of regional node metastasis justifies wide excision and sentinel node biopsy.
                  Nal64
                  Participant

                    I just found this study on an old thread, wondering if this could be what we are experiencing? I'm going to look into it further and look up the docs responsible for the study to see if I can contact them. It's so amazing the amount of support and knowledge I have gained in the last 24 hours. Thank you all so much!

                    2009 update says:
                     
                     
                    Abstract
                    BACKGROUND:
                    Solitary dermal melanoma (SDM) is confined to the dermal and/or subcutaneous tissue without an epidermal component. It is unclear whether this lesion is a subtype of primary melanoma or distant cutaneous metastasis from an unknown primary. We evaluated our large experience to determine the prognosis and optimal management of SDM.
                     
                    METHODS:
                     
                    Our melanoma referral center's database of prospectively acquired records was used for identification and clinicopathologic analysis of patients presenting with SDM between 1971 and 2005.
                     
                    RESULTS:
                     
                    Of 12,817 database patients seen during a 34-year period, 101 (0.8%) had SDM. Of 92 patients free of distant metastasis on initial presentation, 55 (60%) were observed and 37 (40%) underwent surgical nodal staging: regional metastases were identified in 7 (19%). Nodal recurrence occurred in 1 of 30 patients (3.3%) with histopathology-negative nodes compared with 13 of 55 patients (24%) who underwent nodal observation instead of nodal staging. Thus, 21 of 92 patients (23%) had nodal metastasis identified during surgical nodal staging or postoperative nodal observation. At a median follow-up of 68 months, estimated 5-year overall survival rate was 73% for 71 patients with localized disease versus 67% for 21 patients with regional disease (P=0.25) versus 22% for 9 patients with distant disease (P=0.009, regional versus distant disease).
                     
                    CONCLUSIONS:
                     
                    SDM resembles intermediate-thickness primary cutaneous melanoma with respect to prognostic characteristics and clinical evolution, but its rate of distant metastasis justifies radiographic staging and its high rate of regional node metastasis justifies wide excision and sentinel node biopsy.
                    Nal64
                    Participant

                      I just found this study on an old thread, wondering if this could be what we are experiencing? I'm going to look into it further and look up the docs responsible for the study to see if I can contact them. It's so amazing the amount of support and knowledge I have gained in the last 24 hours. Thank you all so much!

                      2009 update says:
                       
                       
                      Abstract
                      BACKGROUND:
                      Solitary dermal melanoma (SDM) is confined to the dermal and/or subcutaneous tissue without an epidermal component. It is unclear whether this lesion is a subtype of primary melanoma or distant cutaneous metastasis from an unknown primary. We evaluated our large experience to determine the prognosis and optimal management of SDM.
                       
                      METHODS:
                       
                      Our melanoma referral center's database of prospectively acquired records was used for identification and clinicopathologic analysis of patients presenting with SDM between 1971 and 2005.
                       
                      RESULTS:
                       
                      Of 12,817 database patients seen during a 34-year period, 101 (0.8%) had SDM. Of 92 patients free of distant metastasis on initial presentation, 55 (60%) were observed and 37 (40%) underwent surgical nodal staging: regional metastases were identified in 7 (19%). Nodal recurrence occurred in 1 of 30 patients (3.3%) with histopathology-negative nodes compared with 13 of 55 patients (24%) who underwent nodal observation instead of nodal staging. Thus, 21 of 92 patients (23%) had nodal metastasis identified during surgical nodal staging or postoperative nodal observation. At a median follow-up of 68 months, estimated 5-year overall survival rate was 73% for 71 patients with localized disease versus 67% for 21 patients with regional disease (P=0.25) versus 22% for 9 patients with distant disease (P=0.009, regional versus distant disease).
                       
                      CONCLUSIONS:
                       
                      SDM resembles intermediate-thickness primary cutaneous melanoma with respect to prognostic characteristics and clinical evolution, but its rate of distant metastasis justifies radiographic staging and its high rate of regional node metastasis justifies wide excision and sentinel node biopsy.
                      Nal64
                      Participant

                        Thank you, thank you, thank you!  I do think it is on our best interest to continue getting opinions. Did you have any trouble with insurance allowing these visits? I got a chuckle from our Primary physician when we mentioned paying out of pocket to see specialists, I guess they no longer do that and deal only with insurance companies?

                        We will be getting CT scans every 3 months, insurance has agreed to that. The biggest question now is who's advice to go with??  For the time being we try to remain positive that the tumor is removed and he is currently NED. So happy to hear of someone else with a strange presentation being healthy 2 years out! We are not reading enough of those stories:)

                        Nal64
                        Participant

                          Thank you, thank you, thank you!  I do think it is on our best interest to continue getting opinions. Did you have any trouble with insurance allowing these visits? I got a chuckle from our Primary physician when we mentioned paying out of pocket to see specialists, I guess they no longer do that and deal only with insurance companies?

                          We will be getting CT scans every 3 months, insurance has agreed to that. The biggest question now is who's advice to go with??  For the time being we try to remain positive that the tumor is removed and he is currently NED. So happy to hear of someone else with a strange presentation being healthy 2 years out! We are not reading enough of those stories:)

                          Nal64
                          Participant

                            Thank you, thank you, thank you!  I do think it is on our best interest to continue getting opinions. Did you have any trouble with insurance allowing these visits? I got a chuckle from our Primary physician when we mentioned paying out of pocket to see specialists, I guess they no longer do that and deal only with insurance companies?

                            We will be getting CT scans every 3 months, insurance has agreed to that. The biggest question now is who's advice to go with??  For the time being we try to remain positive that the tumor is removed and he is currently NED. So happy to hear of someone else with a strange presentation being healthy 2 years out! We are not reading enough of those stories:)

                            Nal64
                            Participant

                              First, thank you SO much for reaching out! Knowing someone on here knows the area and what they are talking about feels like we are not so alone in this journey.  

                              We first had a CT to see if it was below the muscle, then an MRI to see how big it was and finally a PET when they determined it was melanoma. They were looking for the primary at that point, never found it.  The MRI and PET had to be done in one week, through insurance- not easy! We ended up in libertyville for the PET with one lab tech reading it. The docs have interpreted his findings, but I would love to have another one done at a teaching hospital.  I know one is required at the beginning of the yervoy clinical trial going on. Any idea if that is through insurance or the drug company?

                              luckly we have family in the New York area and may look at Sloan being our "second opinion".  You are right though, everyone we have come across seems to stress the fact that the presentation of this single, large tumor is highly unusual.

                              Thanks,

                              N

                              Nal64
                              Participant

                                First, thank you SO much for reaching out! Knowing someone on here knows the area and what they are talking about feels like we are not so alone in this journey.  

                                We first had a CT to see if it was below the muscle, then an MRI to see how big it was and finally a PET when they determined it was melanoma. They were looking for the primary at that point, never found it.  The MRI and PET had to be done in one week, through insurance- not easy! We ended up in libertyville for the PET with one lab tech reading it. The docs have interpreted his findings, but I would love to have another one done at a teaching hospital.  I know one is required at the beginning of the yervoy clinical trial going on. Any idea if that is through insurance or the drug company?

                                luckly we have family in the New York area and may look at Sloan being our "second opinion".  You are right though, everyone we have come across seems to stress the fact that the presentation of this single, large tumor is highly unusual.

                                Thanks,

                                N

                                Nal64
                                Participant

                                  First, thank you SO much for reaching out! Knowing someone on here knows the area and what they are talking about feels like we are not so alone in this journey.  

                                  We first had a CT to see if it was below the muscle, then an MRI to see how big it was and finally a PET when they determined it was melanoma. They were looking for the primary at that point, never found it.  The MRI and PET had to be done in one week, through insurance- not easy! We ended up in libertyville for the PET with one lab tech reading it. The docs have interpreted his findings, but I would love to have another one done at a teaching hospital.  I know one is required at the beginning of the yervoy clinical trial going on. Any idea if that is through insurance or the drug company?

                                  luckly we have family in the New York area and may look at Sloan being our "second opinion".  You are right though, everyone we have come across seems to stress the fact that the presentation of this single, large tumor is highly unusual.

                                  Thanks,

                                  N

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