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Question about Becoming Stage IV
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Question about Becoming Stage IV

› Forums › General Melanoma Community › Question about Becoming Stage IV

  • Post
    • August 5, 2011 at 8:23 pm
    mombase
    Participant

      This is just a general question, and this might be a figment of my imagine:

      Are there lots and lots of folks who have been diagnosed as Stage IV that were declared free of disease years prior? For example, I had a lesion on my back that was fairly deep (can't remember the actual Breslow rating), it was removed and sentinel galns under both armpits were negative for disease.  I was told "congratulations", sent on my way, and no further treatment was advised. Three years later, melanoma brain tumor and lung tumors.

      This is just a general question, and this might be a figment of my imagine:

      Are there lots and lots of folks who have been diagnosed as Stage IV that were declared free of disease years prior? For example, I had a lesion on my back that was fairly deep (can't remember the actual Breslow rating), it was removed and sentinel galns under both armpits were negative for disease.  I was told "congratulations", sent on my way, and no further treatment was advised. Three years later, melanoma brain tumor and lung tumors.

      I know "the beast" is sneaky and resistant, but isn't there anything that dermatologists, nutritionists, etc. could advise to maybe alert a person that a certain lifestyle change might aid in helping the body fight off future melanoma?

      I am thinking that there are a LOT of folks who are in the same boat. Not that the disease might always be avoided, but that we might have a better chance. I know this is not a medical judjment,  just a personal one!

      Cristy, Stage IV

    Viewing 7 reply threads
    • Replies
        • August 5, 2011 at 9:02 pm
        lhaley
        Participant

          Cristy,

          It took me 27 years to go from stage 1A to stage IV.  That means it was lurking the entire time. I don't think there is any one thing for each person that you could do to make sure it doesn't come back.  Some will say to eat better and exercise more. Maybe that works but I've seen so many on this board that this has not helped. While it's a good idea to live a healthy lifestyle I don't think a study has been done to see if this actually has an effect.  I can honestly say while healthy I did exercise.  While I didn't eat great I can't say that I had a terrible diet.   Some think stress makes it harder on your immune system to keep up. I couldn't hibernate for all of those years! 

          To me you just have to stay vigilent.  I went to an oncologist for most of those years because I had multiple primaries. X-rays for a few years but it was determined that the risk/benefit ratio was not worth it. I picked up my recurrance myself when I felt the lump.

          One day after I was stage IV for 3 years and had just had my 3rd recurrance and in panic mode, I asked my local oncologist what I could do to prevent this.  She told me that it wouldn't hurt to exercise, they knew  from studies in breast cancer that 20 min a day did help. I pushed on and got back into excersize mode till the next recurrance came along.  Radiation has slowed me down right now but I was excercising again till my last surgery. That gym membership is still there waiting for me!! 

          Linda

            • August 6, 2011 at 1:20 am
            mombase
            Participant

              I hear you, my sister would like for me to eat all of these foods that make me want to barf just looking at them. That probabaly creates more stress than anything!

              I know a lot of people who have been helped by iscador, but there have not been any studies on melanoma, and I don't think Weleda has the big bucks to conduct a viable study. My oncs won't even consider treating me if I choose to try iscador because of liability. Also, I think you hit the nail on the head when you mentioned risk/benefit. I think insurance companies are not going to be willing to pay for adjuvant therapies that are not warranted.

              I think the most frustrating thing about mel is how different it is in each individual. Makes treating it very difficult!

              Take care~

              Cristy

              • August 6, 2011 at 2:30 am
              lhaley
              Participant

                I know you were talking about prevention.  Now that you have tumors and are about to start treatment make sure that you don't add any supplements without consulting your Dr first!  Drug interactions can really be harmful and can also depending on the drugs and the supplements make the drug ineffective.    Locally I went to a group that my GP runs. She is very much into supplements and healthy eating and pushes this as part of her practice.  The first thing though she told us was no supplements while on treatments.  I haven't been able to get rid of my bad eating habits but I have added some good ones!  Sometimes some good old southern comfort food is needed. 

                My mel specialist tells me that supplements just aren't watched over closely enough and haven't been proven to help.  My local onc says the same thing. They even stopped my vitamin D ( I have a deficiency) and vitamin E during radiation!

                Linda

                • August 6, 2011 at 5:44 pm
                mombase
                Participant

                  I agree with you, both my oncs stressed that I could not be on any supplements (I am not a supplement kind of person anyway) and that anything like iscador would be a deal breaker for treatment. That's alright, I do not like giving myself injections, anyway!!

                  I try to eat decently, but I am not a macrobiotics kind of girl. Give me a plate of pasta any day!

                  • August 6, 2011 at 5:44 pm
                  mombase
                  Participant

                    I agree with you, both my oncs stressed that I could not be on any supplements (I am not a supplement kind of person anyway) and that anything like iscador would be a deal breaker for treatment. That's alright, I do not like giving myself injections, anyway!!

                    I try to eat decently, but I am not a macrobiotics kind of girl. Give me a plate of pasta any day!

                    • August 6, 2011 at 2:30 am
                    lhaley
                    Participant

                      I know you were talking about prevention.  Now that you have tumors and are about to start treatment make sure that you don't add any supplements without consulting your Dr first!  Drug interactions can really be harmful and can also depending on the drugs and the supplements make the drug ineffective.    Locally I went to a group that my GP runs. She is very much into supplements and healthy eating and pushes this as part of her practice.  The first thing though she told us was no supplements while on treatments.  I haven't been able to get rid of my bad eating habits but I have added some good ones!  Sometimes some good old southern comfort food is needed. 

                      My mel specialist tells me that supplements just aren't watched over closely enough and haven't been proven to help.  My local onc says the same thing. They even stopped my vitamin D ( I have a deficiency) and vitamin E during radiation!

                      Linda

                      • August 6, 2011 at 1:20 am
                      mombase
                      Participant

                        I hear you, my sister would like for me to eat all of these foods that make me want to barf just looking at them. That probabaly creates more stress than anything!

                        I know a lot of people who have been helped by iscador, but there have not been any studies on melanoma, and I don't think Weleda has the big bucks to conduct a viable study. My oncs won't even consider treating me if I choose to try iscador because of liability. Also, I think you hit the nail on the head when you mentioned risk/benefit. I think insurance companies are not going to be willing to pay for adjuvant therapies that are not warranted.

                        I think the most frustrating thing about mel is how different it is in each individual. Makes treating it very difficult!

                        Take care~

                        Cristy

                      • August 5, 2011 at 9:02 pm
                      lhaley
                      Participant

                        Cristy,

                        It took me 27 years to go from stage 1A to stage IV.  That means it was lurking the entire time. I don't think there is any one thing for each person that you could do to make sure it doesn't come back.  Some will say to eat better and exercise more. Maybe that works but I've seen so many on this board that this has not helped. While it's a good idea to live a healthy lifestyle I don't think a study has been done to see if this actually has an effect.  I can honestly say while healthy I did exercise.  While I didn't eat great I can't say that I had a terrible diet.   Some think stress makes it harder on your immune system to keep up. I couldn't hibernate for all of those years! 

                        To me you just have to stay vigilent.  I went to an oncologist for most of those years because I had multiple primaries. X-rays for a few years but it was determined that the risk/benefit ratio was not worth it. I picked up my recurrance myself when I felt the lump.

                        One day after I was stage IV for 3 years and had just had my 3rd recurrance and in panic mode, I asked my local oncologist what I could do to prevent this.  She told me that it wouldn't hurt to exercise, they knew  from studies in breast cancer that 20 min a day did help. I pushed on and got back into excersize mode till the next recurrance came along.  Radiation has slowed me down right now but I was excercising again till my last surgery. That gym membership is still there waiting for me!! 

                        Linda

                        • August 6, 2011 at 2:22 am
                        Charlie S
                        Participant

                          Most people posting here either have a recent diagnosis, active disease, worrisome of disease progression or have progressing disease.  

                          Though some do, those that have moved beyond those four points for the most part seldom if ever post here because they are busy living and see no usefull purpose to dwell on the past as a way forward..  

                          I personally know LOTS of Stage Fourbees living large and for them this forum is a relic of a past life they see no reason to revisit.

                          They are not a number, they are not a statistic, they are humans living beyond others preconceived notions.

                          Because they are livng large, that is quite okay with me.  

                          You MUST beleive they are out there, because they are.

                          For instance, look at the "poster children" who have a patient story on the front page of the MRF…………loking at one right now Stan Alder…………….he overcame, do you see him posting here?  Nope.

                          But I bet he's living !  Crap, even the Chair of the MRF, Randy Lomax, himself a melanoma survivor, never posts.

                          Oh well, just a thought.

                          Cheers,

                          Charlie S

                            • August 6, 2011 at 5:47 pm
                            mombase
                            Participant

                              Thanks for the food for thought, Charlie. I appreciate it. In that light, I pray that there are fewer and fewer Stage IV posters on this board!! cool

                              • August 6, 2011 at 5:47 pm
                              mombase
                              Participant

                                Thanks for the food for thought, Charlie. I appreciate it. In that light, I pray that there are fewer and fewer Stage IV posters on this board!! cool

                              • August 6, 2011 at 2:22 am
                              Charlie S
                              Participant

                                Most people posting here either have a recent diagnosis, active disease, worrisome of disease progression or have progressing disease.  

                                Though some do, those that have moved beyond those four points for the most part seldom if ever post here because they are busy living and see no usefull purpose to dwell on the past as a way forward..  

                                I personally know LOTS of Stage Fourbees living large and for them this forum is a relic of a past life they see no reason to revisit.

                                They are not a number, they are not a statistic, they are humans living beyond others preconceived notions.

                                Because they are livng large, that is quite okay with me.  

                                You MUST beleive they are out there, because they are.

                                For instance, look at the "poster children" who have a patient story on the front page of the MRF…………loking at one right now Stan Alder…………….he overcame, do you see him posting here?  Nope.

                                But I bet he's living !  Crap, even the Chair of the MRF, Randy Lomax, himself a melanoma survivor, never posts.

                                Oh well, just a thought.

                                Cheers,

                                Charlie S

                                • August 6, 2011 at 3:06 am
                                LynnLuc
                                Participant

                                  Back in the early 90's I had melanoma on my neck…came back around 96 and instead of a flat brown freckle it was a blackish eraser looking thing- soft to touch…I waited because my some was diagnosed with a rare and deadly form of cancer…desmoplastic small round cell sarcoma…he passed away at age 16 in 98…i waited and then in 2000  another biopsy- Diagnosis: Malignant Melanoma. Clark's Level 3. Tumor Thickness 1.45mm. The Margins of Excision appear uninvolved. Microscopic Description:

                                  Within the dermis is a tumor composed of sheets of mildly atypical melanocytes some of which are pigmented. The pattern is consistent with malignant melanoma and involves a widened papillary dermis. Unequivocal invasion into the reticular dermis is identified. There are a few atypical melanocytes within the epidermis although pagetoid spread is not a prominent component. Tumor thickness is measured 1.45 mm. The margins of excision appear uninvolved. A re-excision  is a consideration. Correlate clinically.

                                  It was a few months later they took out 5 sentnal lymph nodes from my neck…all clear and they recommended nothing more,

                                  It showed up again in 2009- by my heart…squishing my superior vena cava…they gave me 6-9 months at Mayo in Rochester…

                                  in March 2010 I finally talked them into surgery ( after radiation and Temodar held it back for awhile) because it was growing. On March 26 they removed a melanoma from alymph node in my mediasteinum and it was 6.8 cent at the widest part. They also removed other lymph nodes and they appeared clear.

                                  So instead of being dead I am NED now since March 26, 2010. Doing a trial at Moffitt with anti PD 1 and peptides, however now I am finished and only doing the anti pd 1  in an iv every 3 months.

                                  It may not seem like a long time, but considering the prognosis…I am so thankful! Lynn

                                   

                                  http://www.gentlewinds.org

                                    • August 6, 2011 at 5:52 pm
                                    mombase
                                    Participant

                                      Thank you for sharing this, Lynn. And congratulations! Since I was given six months to live by my onc (without treatment) 18 months is a long time! I have begun to wrap my brain around viewing life in chunks of time and being grateful for every minute!

                                      • August 6, 2011 at 5:52 pm
                                      mombase
                                      Participant

                                        Thank you for sharing this, Lynn. And congratulations! Since I was given six months to live by my onc (without treatment) 18 months is a long time! I have begun to wrap my brain around viewing life in chunks of time and being grateful for every minute!

                                      • August 6, 2011 at 3:06 am
                                      LynnLuc
                                      Participant

                                        Back in the early 90's I had melanoma on my neck…came back around 96 and instead of a flat brown freckle it was a blackish eraser looking thing- soft to touch…I waited because my some was diagnosed with a rare and deadly form of cancer…desmoplastic small round cell sarcoma…he passed away at age 16 in 98…i waited and then in 2000  another biopsy- Diagnosis: Malignant Melanoma. Clark's Level 3. Tumor Thickness 1.45mm. The Margins of Excision appear uninvolved. Microscopic Description:

                                        Within the dermis is a tumor composed of sheets of mildly atypical melanocytes some of which are pigmented. The pattern is consistent with malignant melanoma and involves a widened papillary dermis. Unequivocal invasion into the reticular dermis is identified. There are a few atypical melanocytes within the epidermis although pagetoid spread is not a prominent component. Tumor thickness is measured 1.45 mm. The margins of excision appear uninvolved. A re-excision  is a consideration. Correlate clinically.

                                        It was a few months later they took out 5 sentnal lymph nodes from my neck…all clear and they recommended nothing more,

                                        It showed up again in 2009- by my heart…squishing my superior vena cava…they gave me 6-9 months at Mayo in Rochester…

                                        in March 2010 I finally talked them into surgery ( after radiation and Temodar held it back for awhile) because it was growing. On March 26 they removed a melanoma from alymph node in my mediasteinum and it was 6.8 cent at the widest part. They also removed other lymph nodes and they appeared clear.

                                        So instead of being dead I am NED now since March 26, 2010. Doing a trial at Moffitt with anti PD 1 and peptides, however now I am finished and only doing the anti pd 1  in an iv every 3 months.

                                        It may not seem like a long time, but considering the prognosis…I am so thankful! Lynn

                                         

                                        http://www.gentlewinds.org

                                        • August 6, 2011 at 8:05 am
                                        Kim K
                                        Participant

                                          I was diagnosed stage IIA in the summer of 2002.  My SNB was negative.  I was followed for 3 years afterwards by yearly chest x-rays and frequent onc. visits.

                                          While I was never told I was cured or had received my "all clear", I quit going when I moved back home to Hawaii.  

                                          In the summer of 2009 I had a back x-ray done for other reasons and they found a tumor.  A follow up pet in the beginning of 2010 not only saw the one lung mass, but a smaller one in my chest wall muscle.  My lymph nodes were and are still fine.

                                          I underwent surgery to remove the lung mass which officially moved me to stage IV, and did high dose IL-2 which cleared the remaining muscle mass.  That was a year ago.  I am still NED.

                                          No one knows when I progressed other than it was after the 3 year mark.  I got busy trying for my second child, taking care of my parents, dealt with the ups and downs of employment…  I lived my life.

                                          I am still living my life.

                                          No one ever gave me an all clear, in fact it was the opposite.  I had one derm pushing INF because at my age I had plenty of time for it to recur.  Then she shoved some stats at me and said INF only caused mild flu like symptoms, and if she were me she wouldn't hesitate to do it.

                                          It was the last visit I ever had with her and instead I went to a surgical onc for my SNB.  He to said I would never be cured.  So what, as long as I was NED everything was symantics!

                                          Shit happens, mulling over how you got there usually gets you nowhere but down a deep dark hole, and it still doesn't change anything.  Focus instead on your current fight.  I admit that when I unexpectedly lept to stage IV without any symptoms and was caught by luck, it rocked my world all over again.

                                          Funny though, I am no longer freaked out by my scans.  If I have to be stage IV, it could be a whole lot worse!!!  I hope you kick mel's A$$ back into oblivion.  Yup, it sucks rocks, but focus on the battle ahead.  Best of luck!

                                          Kim

                                            • August 6, 2011 at 6:01 pm
                                            mombase
                                            Participant

                                              Kim, thanks for the kick-a$$ response! I am finally beginning to understand how the oncs pretty much just base their plan on statistics and do not like their plans challenged! I am grateful that my radiation onc supported my decision not to go with the whole brain radiation, but the department that referred me to the radiation onc was shocked that I decided not to do it and instead asked to start on Yervoy. I have to forge ahead though and put up with the resistance because I have to work within the VA system. I thank God for this board because you are real people with real stories and I doubt you are going to lie about your experiences. That is a whole lot more comforting than statistics!! yes

                                              • August 6, 2011 at 6:01 pm
                                              mombase
                                              Participant

                                                Kim, thanks for the kick-a$$ response! I am finally beginning to understand how the oncs pretty much just base their plan on statistics and do not like their plans challenged! I am grateful that my radiation onc supported my decision not to go with the whole brain radiation, but the department that referred me to the radiation onc was shocked that I decided not to do it and instead asked to start on Yervoy. I have to forge ahead though and put up with the resistance because I have to work within the VA system. I thank God for this board because you are real people with real stories and I doubt you are going to lie about your experiences. That is a whole lot more comforting than statistics!! yes

                                              • August 6, 2011 at 8:05 am
                                              Kim K
                                              Participant

                                                I was diagnosed stage IIA in the summer of 2002.  My SNB was negative.  I was followed for 3 years afterwards by yearly chest x-rays and frequent onc. visits.

                                                While I was never told I was cured or had received my "all clear", I quit going when I moved back home to Hawaii.  

                                                In the summer of 2009 I had a back x-ray done for other reasons and they found a tumor.  A follow up pet in the beginning of 2010 not only saw the one lung mass, but a smaller one in my chest wall muscle.  My lymph nodes were and are still fine.

                                                I underwent surgery to remove the lung mass which officially moved me to stage IV, and did high dose IL-2 which cleared the remaining muscle mass.  That was a year ago.  I am still NED.

                                                No one knows when I progressed other than it was after the 3 year mark.  I got busy trying for my second child, taking care of my parents, dealt with the ups and downs of employment…  I lived my life.

                                                I am still living my life.

                                                No one ever gave me an all clear, in fact it was the opposite.  I had one derm pushing INF because at my age I had plenty of time for it to recur.  Then she shoved some stats at me and said INF only caused mild flu like symptoms, and if she were me she wouldn't hesitate to do it.

                                                It was the last visit I ever had with her and instead I went to a surgical onc for my SNB.  He to said I would never be cured.  So what, as long as I was NED everything was symantics!

                                                Shit happens, mulling over how you got there usually gets you nowhere but down a deep dark hole, and it still doesn't change anything.  Focus instead on your current fight.  I admit that when I unexpectedly lept to stage IV without any symptoms and was caught by luck, it rocked my world all over again.

                                                Funny though, I am no longer freaked out by my scans.  If I have to be stage IV, it could be a whole lot worse!!!  I hope you kick mel's A$$ back into oblivion.  Yup, it sucks rocks, but focus on the battle ahead.  Best of luck!

                                                Kim

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