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

Stage IV Metatastic Diagnosis

Forums General Melanoma Community Stage IV Metatastic Diagnosis

  • Post
    Mom2Addy
    Participant

      Our journey began in 2009 with a melanoma removed from my husband's back, followed by surgery to remove 2 lymph nodes under his left arm.  Three years later, the CT scan showed that same area under his left arm lit up so more surgery to remove another 8-10 lymph nodes, followed this time by 20 treatments with Interferon.  Fast forward to 2014 with a clean scan (one questionable area marked to watch) in June to December, where the CT showed two spots in his brain, one nodule on his back, two on his leg, one in the right bicep and one on the chest wall.  They removed one nodule and it came back positive for melanoma.  Diagnosis, stage IV Metatastic Melanoma.  We were shocked beyond belief, especially because he hadn't felt sick and the nodules didn't cause him any pain.  In fact we were consistently told they were probably just fat pockets but having been a melanoma patient, knew we had to get them tested.  Is feeling perfectly fine, no pain and no effects of the brain lesions common?  Do others feel perfectly normal and yet get hit with such a devastating diagnosis? 

      Just to close out, he did have steretactic radiation on his brain the first week of January and surgery last Friday to remove the nodules in his arm, leg and chest.  We are now awaiting the start of IPI, which has been delayed due to the heavy doses of dexamethasone (steroid) to treat the side effects of the SRS.  Again, other than expect side effects of the SRS and surgery, he still doesn't feel sick.  Just difficult getting our heads around this!

      Thank you.

    Viewing 11 reply threads
    • Replies
        yazziemac
        Participant

          Hi

          My husband was also diagnosed Stage 4 in November, 2014, with a brain tumour.  He also did not have any symptoms and was feeling well–the brain tumour was found in a routine CT scan.  He ended up having the tumour removed through a Craniotomy in late November, followed by gamma knife brain radiation in December, 2014.  He is very tired and weak still, but has no pain or other symptoms.  He was NED as of full body scans on Jan. 20, 2015.  Best of luck to your husband!

          Yasmin

          yazziemac
          Participant

            Hi

            My husband was also diagnosed Stage 4 in November, 2014, with a brain tumour.  He also did not have any symptoms and was feeling well–the brain tumour was found in a routine CT scan.  He ended up having the tumour removed through a Craniotomy in late November, followed by gamma knife brain radiation in December, 2014.  He is very tired and weak still, but has no pain or other symptoms.  He was NED as of full body scans on Jan. 20, 2015.  Best of luck to your husband!

            Yasmin

            yazziemac
            Participant

              Hi

              My husband was also diagnosed Stage 4 in November, 2014, with a brain tumour.  He also did not have any symptoms and was feeling well–the brain tumour was found in a routine CT scan.  He ended up having the tumour removed through a Craniotomy in late November, followed by gamma knife brain radiation in December, 2014.  He is very tired and weak still, but has no pain or other symptoms.  He was NED as of full body scans on Jan. 20, 2015.  Best of luck to your husband!

              Yasmin

              RayMerrill
              Participant

                Ha. Mom2Andy In 2011 i was diagnose with stage 3c melanoma I to felt fine the hole time . it was when they tild me it was melanoma & they started cutting removed lymphnodes & more cutting . it was gone for about 1month & came  back they removed more lympnodes & cut out more . that listed about a week then started spreading verry fast.I ended up at the main Cancer center in Atlanta  Ga.  they cut & tried Kemo with no luck they wanted to take my leg off To slow down the cancre & give me a nother month to live . i Refused & i was told there was no cure for my cancer. 1 of the nurses at my Church told me that there ware some places that was doing experimental treatments & to check it out.  that was in the later part of 2012 I called then & found out that they have been treating cancers since the 1970s  i was in real bad shape when i got to them  i was in a wheel chair .. the treatment had never been able to be aproved by the FDA. so i had to go to the Camen Islands  to get my treatments after the first one i was able to walk. a month later i was walking on my own . & fealing a lot better.  i had a MRI & Pet scan. done after back in the states & now showing no signs if any cancer Even in my kidneys. 6 mo . later still no cancern its 2015 still perfectly clean of cancer. I would not have believed it if i hadent lived it my self. I am on this site to tell others there are cures for cancer . The name is Perseus PCI  you can find it on the Internet . i have a video Along with others. i do not type so well if you like to call me i would be glad to talk to you. I think God has given me a change to make a difference to help others .       Ray. Merrill  

                  JoshF
                  Participant

                    Tell us more Ray. What kind of experimental treatment…a vaccine maybe? You certainly know how to spell Perseus PCI very well. Interesting…..

                    JoshF
                    Participant

                      Tell us more Ray. What kind of experimental treatment…a vaccine maybe? You certainly know how to spell Perseus PCI very well. Interesting…..

                      RayMerrill
                      Participant

                        JoshF  who is us.  There is a lot of people who don`t want anyone to know there is alternate treatments for Cancer. Are you in the Medical profession. or do you really have cancer. If you are sincear i would be glad to talk with you .  As my life was not worth living bebore my treatment started. & why do i know how to spell Perseus so well . I now have a life again & it is because of them  I feal that i have a second chanch  to live. And God is in my life. I know that i should share my experiances with others so they possibly won`t have to go ghrouth what i did. I am strictly on this site to help others have a 2nd chanch too.

                        RayMerrill
                        Participant

                          JoshF  who is us.  There is a lot of people who don`t want anyone to know there is alternate treatments for Cancer. Are you in the Medical profession. or do you really have cancer. If you are sincear i would be glad to talk with you .  As my life was not worth living bebore my treatment started. & why do i know how to spell Perseus so well . I now have a life again & it is because of them  I feal that i have a second chanch  to live. And God is in my life. I know that i should share my experiances with others so they possibly won`t have to go ghrouth what i did. I am strictly on this site to help others have a 2nd chanch too.

                          RayMerrill
                          Participant

                            JoshF  who is us.  There is a lot of people who don`t want anyone to know there is alternate treatments for Cancer. Are you in the Medical profession. or do you really have cancer. If you are sincear i would be glad to talk with you .  As my life was not worth living bebore my treatment started. & why do i know how to spell Perseus so well . I now have a life again & it is because of them  I feal that i have a second chanch  to live. And God is in my life. I know that i should share my experiances with others so they possibly won`t have to go ghrouth what i did. I am strictly on this site to help others have a 2nd chanch too.

                            JoshF
                            Participant

                              Tell us more Ray. What kind of experimental treatment…a vaccine maybe? You certainly know how to spell Perseus PCI very well. Interesting…..

                            RayMerrill
                            Participant

                              Ha. Mom2Andy In 2011 i was diagnose with stage 3c melanoma I to felt fine the hole time . it was when they tild me it was melanoma & they started cutting removed lymphnodes & more cutting . it was gone for about 1month & came  back they removed more lympnodes & cut out more . that listed about a week then started spreading verry fast.I ended up at the main Cancer center in Atlanta  Ga.  they cut & tried Kemo with no luck they wanted to take my leg off To slow down the cancre & give me a nother month to live . i Refused & i was told there was no cure for my cancer. 1 of the nurses at my Church told me that there ware some places that was doing experimental treatments & to check it out.  that was in the later part of 2012 I called then & found out that they have been treating cancers since the 1970s  i was in real bad shape when i got to them  i was in a wheel chair .. the treatment had never been able to be aproved by the FDA. so i had to go to the Camen Islands  to get my treatments after the first one i was able to walk. a month later i was walking on my own . & fealing a lot better.  i had a MRI & Pet scan. done after back in the states & now showing no signs if any cancer Even in my kidneys. 6 mo . later still no cancern its 2015 still perfectly clean of cancer. I would not have believed it if i hadent lived it my self. I am on this site to tell others there are cures for cancer . The name is Perseus PCI  you can find it on the Internet . i have a video Along with others. i do not type so well if you like to call me i would be glad to talk to you. I think God has given me a change to make a difference to help others .       Ray. Merrill  

                              RayMerrill
                              Participant

                                Ha. Mom2Andy In 2011 i was diagnose with stage 3c melanoma I to felt fine the hole time . it was when they tild me it was melanoma & they started cutting removed lymphnodes & more cutting . it was gone for about 1month & came  back they removed more lympnodes & cut out more . that listed about a week then started spreading verry fast.I ended up at the main Cancer center in Atlanta  Ga.  they cut & tried Kemo with no luck they wanted to take my leg off To slow down the cancre & give me a nother month to live . i Refused & i was told there was no cure for my cancer. 1 of the nurses at my Church told me that there ware some places that was doing experimental treatments & to check it out.  that was in the later part of 2012 I called then & found out that they have been treating cancers since the 1970s  i was in real bad shape when i got to them  i was in a wheel chair .. the treatment had never been able to be aproved by the FDA. so i had to go to the Camen Islands  to get my treatments after the first one i was able to walk. a month later i was walking on my own . & fealing a lot better.  i had a MRI & Pet scan. done after back in the states & now showing no signs if any cancer Even in my kidneys. 6 mo . later still no cancern its 2015 still perfectly clean of cancer. I would not have believed it if i hadent lived it my self. I am on this site to tell others there are cures for cancer . The name is Perseus PCI  you can find it on the Internet . i have a video Along with others. i do not type so well if you like to call me i would be glad to talk to you. I think God has given me a change to make a difference to help others .       Ray. Merrill  

                                Jubes
                                Participant

                                  Hi I had stage 4 in my lungs disgnosed in June 2014 and apart from a persistent cough I felt great. Never better. So I was devastated  to get my diagnosis. It's just so hard to believe. Now on key truss and doing really well 

                                  Jubes
                                  Participant

                                    Hi I had stage 4 in my lungs disgnosed in June 2014 and apart from a persistent cough I felt great. Never better. So I was devastated  to get my diagnosis. It's just so hard to believe. Now on key truss and doing really well 

                                    Jubes
                                    Participant

                                      Hi I had stage 4 in my lungs disgnosed in June 2014 and apart from a persistent cough I felt great. Never better. So I was devastated  to get my diagnosis. It's just so hard to believe. Now on key truss and doing really well 

                                      sweetaugust
                                      Participant

                                        Hi Mom2Addy,

                                        Yes, I too was hit just like that.  A totally healthy feeling 38 girl that was slapped across the face with stage 4.  I had a primary melanoma back in 2000, followed by a few more smaller melanomas shortly after that.  Then nothing at all for about 10 years. 

                                        Somewhere around 2010, my PCP's office called and some doctor in breast health got ahold of my chart, as well as my mothers chart.  She wanted us to come in due to my melanoma history and my mother's breast cancer history.  She was someone we had never met and she was just studying family history and found both our charts.  So even though we both were totally healthy and fine, she asked that I get one breast MRI and one mammogram each year just to make sure I was all good.

                                        So I went in for my usual breast MRI in August 2012 and didn't think anything of it.  They called me back in mid Sept to say something grew and I needed an ultrasound.  They then did a Core biopsy and boom…metastatic melanoma to my right arm pit.  Then the Pet scan showed it was in many nodes throughout my upper body and in my liver.  Such a strange thing to believe considering I felt totally normal.

                                        So I started the Merck pd1 a month later and have been on it over 2 years now.  It has worked and completely shrunk everything down to nothing and I am still feeling fine.  Only evidence I saw throughout all of this was that one of my nodes intially kept growing.  So 3 months into treatment I could start feeling it in my arm pit.  Then at 6 months into treatment it blew up and was hanging out of me for two days.  Then it died and shrunk back down to nothing. 

                                        So yup, the doctors were right, there was some bad stuff going on inside me.  Had that one doctor I had never known, not taken an interest in me, I wouldn't have found my stage 4 as early because there were no symptoms.  I am a very lucky girl.

                                        All my best to you, Laurie

                                        sweetaugust
                                        Participant

                                          Hi Mom2Addy,

                                          Yes, I too was hit just like that.  A totally healthy feeling 38 girl that was slapped across the face with stage 4.  I had a primary melanoma back in 2000, followed by a few more smaller melanomas shortly after that.  Then nothing at all for about 10 years. 

                                          Somewhere around 2010, my PCP's office called and some doctor in breast health got ahold of my chart, as well as my mothers chart.  She wanted us to come in due to my melanoma history and my mother's breast cancer history.  She was someone we had never met and she was just studying family history and found both our charts.  So even though we both were totally healthy and fine, she asked that I get one breast MRI and one mammogram each year just to make sure I was all good.

                                          So I went in for my usual breast MRI in August 2012 and didn't think anything of it.  They called me back in mid Sept to say something grew and I needed an ultrasound.  They then did a Core biopsy and boom…metastatic melanoma to my right arm pit.  Then the Pet scan showed it was in many nodes throughout my upper body and in my liver.  Such a strange thing to believe considering I felt totally normal.

                                          So I started the Merck pd1 a month later and have been on it over 2 years now.  It has worked and completely shrunk everything down to nothing and I am still feeling fine.  Only evidence I saw throughout all of this was that one of my nodes intially kept growing.  So 3 months into treatment I could start feeling it in my arm pit.  Then at 6 months into treatment it blew up and was hanging out of me for two days.  Then it died and shrunk back down to nothing. 

                                          So yup, the doctors were right, there was some bad stuff going on inside me.  Had that one doctor I had never known, not taken an interest in me, I wouldn't have found my stage 4 as early because there were no symptoms.  I am a very lucky girl.

                                          All my best to you, Laurie

                                          sweetaugust
                                          Participant

                                            Hi Mom2Addy,

                                            Yes, I too was hit just like that.  A totally healthy feeling 38 girl that was slapped across the face with stage 4.  I had a primary melanoma back in 2000, followed by a few more smaller melanomas shortly after that.  Then nothing at all for about 10 years. 

                                            Somewhere around 2010, my PCP's office called and some doctor in breast health got ahold of my chart, as well as my mothers chart.  She wanted us to come in due to my melanoma history and my mother's breast cancer history.  She was someone we had never met and she was just studying family history and found both our charts.  So even though we both were totally healthy and fine, she asked that I get one breast MRI and one mammogram each year just to make sure I was all good.

                                            So I went in for my usual breast MRI in August 2012 and didn't think anything of it.  They called me back in mid Sept to say something grew and I needed an ultrasound.  They then did a Core biopsy and boom…metastatic melanoma to my right arm pit.  Then the Pet scan showed it was in many nodes throughout my upper body and in my liver.  Such a strange thing to believe considering I felt totally normal.

                                            So I started the Merck pd1 a month later and have been on it over 2 years now.  It has worked and completely shrunk everything down to nothing and I am still feeling fine.  Only evidence I saw throughout all of this was that one of my nodes intially kept growing.  So 3 months into treatment I could start feeling it in my arm pit.  Then at 6 months into treatment it blew up and was hanging out of me for two days.  Then it died and shrunk back down to nothing. 

                                            So yup, the doctors were right, there was some bad stuff going on inside me.  Had that one doctor I had never known, not taken an interest in me, I wouldn't have found my stage 4 as early because there were no symptoms.  I am a very lucky girl.

                                            All my best to you, Laurie

                                        Viewing 11 reply threads
                                        • You must be logged in to reply to this topic.
                                        About the MRF Patient Forum

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

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

                                        Popular Topics