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NEW, scared shitless, & between Stage 3/Stage 4

Forums General Melanoma Community NEW, scared shitless, & between Stage 3/Stage 4

  • Post
    TamSchubert
    Participant

      Hey all,

      My husband was recently diagnosed with Stage IIIB, and may now be stage 4.

      His primary tumor was on his *left* mid-upper back & only 0.82mm in depth, non-ulcerated. Despite the shallowness, it spread to a sentinel node on the *right* side (2.2mm tumor in node, still fully encapsulated). Two left nodes were tested, and were negative. A full axillary nodal dissection was performed on the right side, and all nodes from that surgery were negative (in total, one positive node (the right sentinel) & 28 negative nodes)

      His first PET/CT scan showed two nodules on his *left* lung, 2mm & 9mm. Our oncologist told us they weren't metabolically active & didnt take up the FDG tracer. He booked us for a follow up CT in two months, and said the nodules were too small for a needle biopsy.

      He did NOT say that he is stage 4 yet, and seemed relatively nonchalant about those two spots on the left lung. No VATS procedure was offered, just a follow up CT.

      We opted out of Interferon in November because he only had one positive lymph node & a relatively shallow primary tumor with no ulceration. We instead chose the "wait & see" route – mainly because the risk/benefit wasn't worth it (I was 5 months pregnant at time of diagnosis, and we wanted him to maintain his quality of life while we prepared for our first little one.)

      However, now that these lungs spots have been seen, I don't know if the "wait & see" choice is the best anymore. Our oncologist didnt seemed too worried about them & didn't mention starting interferon or any other therapy yet, but I'm beside myself with worry.

      Has anyone else had benign lesions on their first PET/CT like this?

      My husband does work around a lot of things that could cause lung issues, and has a history of lung infections including a bad cause of walking pneumonia that resulted in a large peel in his right lung – but it is the left lung showing these nodules. We were told it is fairly likely that these are benign… but we really don't KNOW. I am now 9 months pregnant & beside myself with worry. We contacted MD Anderson & have had his scans and reports sent – we are just waiting to be scheduled in there.

      I want to push for a VATS procedure, but it wasn't even mentioned as an option to us at our last visit. I only learned about it after we left & I began researching independently.

      Anybody with experience in this department?? I cannot stop worrying about these lung spots.

       

    Viewing 21 reply threads
    • Replies
        Toby0987
        Participant

          Sorry to hear about your husband. I'm 3B and I've been getting PET scans since 2013 every 3-6 months and I constantly get spots showing up sometimes the liver, sometimes the lungs, now the appendix. My onc said they are nothing and not to worry about them at all. He said the PET is ultra sensitive and the radiologists and he are experts at determining what is melanoma and what are false positives. I go to mayo in Rochester, MN.  I think you did a smart by not doing interferon. There are much better alternatives now. I'm doing watch and wait. a lot of members are doing immunotherapy and I think you will find overwhelming the peeps on this forum are anti-interferon.

          Toby0987
          Participant

            Sorry to hear about your husband. I'm 3B and I've been getting PET scans since 2013 every 3-6 months and I constantly get spots showing up sometimes the liver, sometimes the lungs, now the appendix. My onc said they are nothing and not to worry about them at all. He said the PET is ultra sensitive and the radiologists and he are experts at determining what is melanoma and what are false positives. I go to mayo in Rochester, MN.  I think you did a smart by not doing interferon. There are much better alternatives now. I'm doing watch and wait. a lot of members are doing immunotherapy and I think you will find overwhelming the peeps on this forum are anti-interferon.

              TamSchubert
              Participant

                Thank you, your story certainly helped to ease my nerves a little bit. This is our first rodeo when it comes to scans, so having anything show up was startling/alarming to us. I become especially freaked out as my pregnancy hormones are at insane levels right now & have been since his diagnosis.

                Interferon never seemed like a great option to us for all the reasons you all are familar with. I'm curious to see what MDA clinic will suggest. We prefer to do the watch & wait for as long as possible, which is why potentially progressing to the next stage really shook us up. Thank you so much for the insight, I wish you nothing but the best with everything!

                TamSchubert
                Participant

                  Thank you, your story certainly helped to ease my nerves a little bit. This is our first rodeo when it comes to scans, so having anything show up was startling/alarming to us. I become especially freaked out as my pregnancy hormones are at insane levels right now & have been since his diagnosis.

                  Interferon never seemed like a great option to us for all the reasons you all are familar with. I'm curious to see what MDA clinic will suggest. We prefer to do the watch & wait for as long as possible, which is why potentially progressing to the next stage really shook us up. Thank you so much for the insight, I wish you nothing but the best with everything!

                  TamSchubert
                  Participant

                    Thank you, your story certainly helped to ease my nerves a little bit. This is our first rodeo when it comes to scans, so having anything show up was startling/alarming to us. I become especially freaked out as my pregnancy hormones are at insane levels right now & have been since his diagnosis.

                    Interferon never seemed like a great option to us for all the reasons you all are familar with. I'm curious to see what MDA clinic will suggest. We prefer to do the watch & wait for as long as possible, which is why potentially progressing to the next stage really shook us up. Thank you so much for the insight, I wish you nothing but the best with everything!

                  Toby0987
                  Participant

                    Sorry to hear about your husband. I'm 3B and I've been getting PET scans since 2013 every 3-6 months and I constantly get spots showing up sometimes the liver, sometimes the lungs, now the appendix. My onc said they are nothing and not to worry about them at all. He said the PET is ultra sensitive and the radiologists and he are experts at determining what is melanoma and what are false positives. I go to mayo in Rochester, MN.  I think you did a smart by not doing interferon. There are much better alternatives now. I'm doing watch and wait. a lot of members are doing immunotherapy and I think you will find overwhelming the peeps on this forum are anti-interferon.

                    Jahendry12
                    Participant

                      Sorry for your worry. It's an awful feeling I know all too well. My husband has dealt with spots on the lungs. Until they get 1 cm or larger, they can't biopsy them. My husband has spots in his lungs that have been there for 3+ years and they have not changed so the doctor has pretty much ruled them out as being melanoma. My husband has had 2 thoracic surgeries. 1st one removed was melanoma, 2nd one was not.  These spots on your husband lung may have been there for a long time. Sounds like this was his first CT so they need a baseline. 

                      I hope this helps a little.  

                      Jahendry12
                      Participant

                        Sorry for your worry. It's an awful feeling I know all too well. My husband has dealt with spots on the lungs. Until they get 1 cm or larger, they can't biopsy them. My husband has spots in his lungs that have been there for 3+ years and they have not changed so the doctor has pretty much ruled them out as being melanoma. My husband has had 2 thoracic surgeries. 1st one removed was melanoma, 2nd one was not.  These spots on your husband lung may have been there for a long time. Sounds like this was his first CT so they need a baseline. 

                        I hope this helps a little.  

                          TamSchubert
                          Participant

                            We were told the same regarding the biopsy, although I was hoping that the one that was 9mm would be large enough to test! I'm hoping my husband's lung spots also don't change, the rescan is on March 29, and yes, this was their baseline scan.

                            What was y'all's progress of treatment when it turned out that he had a lung met? Did they sequence it to determine the gene mutations? Or was that done to the primary tumor? We are very new to the melanoma game, and haven't seen a melanoma specialist yet… MD Anderson should be scheduling us with one this month though.

                            Your post definitely does help, thank you so much for your insight.

                            TamSchubert
                            Participant

                              We were told the same regarding the biopsy, although I was hoping that the one that was 9mm would be large enough to test! I'm hoping my husband's lung spots also don't change, the rescan is on March 29, and yes, this was their baseline scan.

                              What was y'all's progress of treatment when it turned out that he had a lung met? Did they sequence it to determine the gene mutations? Or was that done to the primary tumor? We are very new to the melanoma game, and haven't seen a melanoma specialist yet… MD Anderson should be scheduling us with one this month though.

                              Your post definitely does help, thank you so much for your insight.

                              TamSchubert
                              Participant

                                We were told the same regarding the biopsy, although I was hoping that the one that was 9mm would be large enough to test! I'm hoping my husband's lung spots also don't change, the rescan is on March 29, and yes, this was their baseline scan.

                                What was y'all's progress of treatment when it turned out that he had a lung met? Did they sequence it to determine the gene mutations? Or was that done to the primary tumor? We are very new to the melanoma game, and haven't seen a melanoma specialist yet… MD Anderson should be scheduling us with one this month though.

                                Your post definitely does help, thank you so much for your insight.

                              Jahendry12
                              Participant

                                Sorry for your worry. It's an awful feeling I know all too well. My husband has dealt with spots on the lungs. Until they get 1 cm or larger, they can't biopsy them. My husband has spots in his lungs that have been there for 3+ years and they have not changed so the doctor has pretty much ruled them out as being melanoma. My husband has had 2 thoracic surgeries. 1st one removed was melanoma, 2nd one was not.  These spots on your husband lung may have been there for a long time. Sounds like this was his first CT so they need a baseline. 

                                I hope this helps a little.  

                                jennunicorn
                                Participant

                                  Lung spots are incredibly common and do not automatically mean something bad. I have had lung spots show up on CT, no uptake on PET, and within a few months at the next scan they were gone. We all get lung spots that come and go, it's just when you are getting scans then you actually see these buggers show up and disappear whereas healthy people never see them. My oncologist told me that you could scan 100 healthy people and close to half would have benign lung spots show up. 

                                  I am glad to hear you are getting into MD because your husband should be seeing a melanoma specialist. Mentioning Interferon makes me think he is not seeing one now, since that's a very old and not effective drug. 

                                  No need to push for VATS, those are very small spots and the top protocol for those is to see what they look like at his next scan in a few months. 

                                  The timeline of starting treatment may have passed, so I'm not sure if MD will offer anything, but it's still good to see them and get in with a good mel specialist there.

                                  Hoping all the best for you and your husband.

                                  jennunicorn
                                  Participant

                                    Lung spots are incredibly common and do not automatically mean something bad. I have had lung spots show up on CT, no uptake on PET, and within a few months at the next scan they were gone. We all get lung spots that come and go, it's just when you are getting scans then you actually see these buggers show up and disappear whereas healthy people never see them. My oncologist told me that you could scan 100 healthy people and close to half would have benign lung spots show up. 

                                    I am glad to hear you are getting into MD because your husband should be seeing a melanoma specialist. Mentioning Interferon makes me think he is not seeing one now, since that's a very old and not effective drug. 

                                    No need to push for VATS, those are very small spots and the top protocol for those is to see what they look like at his next scan in a few months. 

                                    The timeline of starting treatment may have passed, so I'm not sure if MD will offer anything, but it's still good to see them and get in with a good mel specialist there.

                                    Hoping all the best for you and your husband.

                                      TamSchubert
                                      Participant

                                        Thank you, reading this definitely has helped calm my nerves a bit. I agree, and I can't wait to hear what the melanoma specialist says. He has been in with a great surgical oncologist & medical oncologist thus far at the CTRC, but I will feel a LOT better with him in the hands of a specialist. His medical oncologist offered interferon or a clinical trial, but didn't really encourage either one yet. We all were on board with the wait and see approach for now.

                                        Thank you so much for your help!

                                        TamSchubert
                                        Participant

                                          Thank you, reading this definitely has helped calm my nerves a bit. I agree, and I can't wait to hear what the melanoma specialist says. He has been in with a great surgical oncologist & medical oncologist thus far at the CTRC, but I will feel a LOT better with him in the hands of a specialist. His medical oncologist offered interferon or a clinical trial, but didn't really encourage either one yet. We all were on board with the wait and see approach for now.

                                          Thank you so much for your help!

                                          TamSchubert
                                          Participant

                                            Thank you, reading this definitely has helped calm my nerves a bit. I agree, and I can't wait to hear what the melanoma specialist says. He has been in with a great surgical oncologist & medical oncologist thus far at the CTRC, but I will feel a LOT better with him in the hands of a specialist. His medical oncologist offered interferon or a clinical trial, but didn't really encourage either one yet. We all were on board with the wait and see approach for now.

                                            Thank you so much for your help!

                                          jennunicorn
                                          Participant

                                            Lung spots are incredibly common and do not automatically mean something bad. I have had lung spots show up on CT, no uptake on PET, and within a few months at the next scan they were gone. We all get lung spots that come and go, it's just when you are getting scans then you actually see these buggers show up and disappear whereas healthy people never see them. My oncologist told me that you could scan 100 healthy people and close to half would have benign lung spots show up. 

                                            I am glad to hear you are getting into MD because your husband should be seeing a melanoma specialist. Mentioning Interferon makes me think he is not seeing one now, since that's a very old and not effective drug. 

                                            No need to push for VATS, those are very small spots and the top protocol for those is to see what they look like at his next scan in a few months. 

                                            The timeline of starting treatment may have passed, so I'm not sure if MD will offer anything, but it's still good to see them and get in with a good mel specialist there.

                                            Hoping all the best for you and your husband.

                                            RaquelP
                                            Participant

                                              I can share our story and then share some advice. Same situation with my father, only in his leg. Follow up scan showed concerning, larger nodule in his lung. Doctor's ordered VATS. Vats confirmed not melanoma, but fibroid. He had a complete lobectomy. I am not saying we regret the decision, just that hindsight is 20/20. It is ideal to watch and wait? Absolutely not, but sometimes it is what is best. If your doctors don't seem concerned then watch and wait is the route to go. That being said, if you are wracked with worry from one Mom to another, do not hesitate to call the doctor and get the reassurance you need. Perhaps ask him/her, what size and uptake would they normally take action, and how does it compare to your husbands situation.

                                              Lung nodules are common in the healthiest of people. This exact suject has been brought up on this forum (and any cancer forum for that matter) too many times to count. Not trying to be dismissive at all. I completely get the worry, but most times, lung nodules that small are benign.

                                              RaquelP
                                              Participant

                                                I can share our story and then share some advice. Same situation with my father, only in his leg. Follow up scan showed concerning, larger nodule in his lung. Doctor's ordered VATS. Vats confirmed not melanoma, but fibroid. He had a complete lobectomy. I am not saying we regret the decision, just that hindsight is 20/20. It is ideal to watch and wait? Absolutely not, but sometimes it is what is best. If your doctors don't seem concerned then watch and wait is the route to go. That being said, if you are wracked with worry from one Mom to another, do not hesitate to call the doctor and get the reassurance you need. Perhaps ask him/her, what size and uptake would they normally take action, and how does it compare to your husbands situation.

                                                Lung nodules are common in the healthiest of people. This exact suject has been brought up on this forum (and any cancer forum for that matter) too many times to count. Not trying to be dismissive at all. I completely get the worry, but most times, lung nodules that small are benign.

                                                  TamSchubert
                                                  Participant

                                                    Thank you for sharing, and I completely understand where you are coming from. When they first biopsied the nodes on the right side they took 8 out (which I think is considered a partial axillary dissection) & only one came back positive. The surgeon didn't suspect any more would be positive, but we elected to go back in for the full dissection anyway… 19 negative nodes later my husband is now down 28 nodes on that side & we both realize in hindsight we may have jumped the gun in opting for the complete dissection. But hey, better safe than sorry right? Its always such a tough call when you just don't know what to expect!

                                                    My level of worry is why we are getting him into a specialist this month at MDA – being pregnant with our first has me just incessantly worried when it comes to long term survival. Especially with what the current 5 & 10 year stats are (although I know they aren't indicative of current treatments, and should be taken lightly). Thank you for the reassurance about the lung nodules, I hope you are right!! ๐Ÿ™‚

                                                    TamSchubert
                                                    Participant

                                                      Thank you for sharing, and I completely understand where you are coming from. When they first biopsied the nodes on the right side they took 8 out (which I think is considered a partial axillary dissection) & only one came back positive. The surgeon didn't suspect any more would be positive, but we elected to go back in for the full dissection anyway… 19 negative nodes later my husband is now down 28 nodes on that side & we both realize in hindsight we may have jumped the gun in opting for the complete dissection. But hey, better safe than sorry right? Its always such a tough call when you just don't know what to expect!

                                                      My level of worry is why we are getting him into a specialist this month at MDA – being pregnant with our first has me just incessantly worried when it comes to long term survival. Especially with what the current 5 & 10 year stats are (although I know they aren't indicative of current treatments, and should be taken lightly). Thank you for the reassurance about the lung nodules, I hope you are right!! ๐Ÿ™‚

                                                      TamSchubert
                                                      Participant

                                                        Thank you for sharing, and I completely understand where you are coming from. When they first biopsied the nodes on the right side they took 8 out (which I think is considered a partial axillary dissection) & only one came back positive. The surgeon didn't suspect any more would be positive, but we elected to go back in for the full dissection anyway… 19 negative nodes later my husband is now down 28 nodes on that side & we both realize in hindsight we may have jumped the gun in opting for the complete dissection. But hey, better safe than sorry right? Its always such a tough call when you just don't know what to expect!

                                                        My level of worry is why we are getting him into a specialist this month at MDA – being pregnant with our first has me just incessantly worried when it comes to long term survival. Especially with what the current 5 & 10 year stats are (although I know they aren't indicative of current treatments, and should be taken lightly). Thank you for the reassurance about the lung nodules, I hope you are right!! ๐Ÿ™‚

                                                      RaquelP
                                                      Participant

                                                        I can share our story and then share some advice. Same situation with my father, only in his leg. Follow up scan showed concerning, larger nodule in his lung. Doctor's ordered VATS. Vats confirmed not melanoma, but fibroid. He had a complete lobectomy. I am not saying we regret the decision, just that hindsight is 20/20. It is ideal to watch and wait? Absolutely not, but sometimes it is what is best. If your doctors don't seem concerned then watch and wait is the route to go. That being said, if you are wracked with worry from one Mom to another, do not hesitate to call the doctor and get the reassurance you need. Perhaps ask him/her, what size and uptake would they normally take action, and how does it compare to your husbands situation.

                                                        Lung nodules are common in the healthiest of people. This exact suject has been brought up on this forum (and any cancer forum for that matter) too many times to count. Not trying to be dismissive at all. I completely get the worry, but most times, lung nodules that small are benign.

                                                        Bubbles
                                                        Participant

                                                          I am sorry for your worry and it is certainly true that Stage III melanoma patients can progress to Stage IV with lung mets.  However, with no uptake to those lesions, waiting to see progression on scans as well as a second opinion sound like a very reasonable approach (as the other posters have said)!  We learn about many things in our bodies when scanned for melanoma that are "red herrings".  The waiting isn't easy, and you are wise to consider all the possibilities, but hopefully this is just a 'red herring'!  And in case you or your husband start feeling guilty re your decision to "watch and wait" rather than do interferon…this was recently published:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/02/for-stage-iiiii-melanoma-patients.html

                                                          This study showed that in patients like your husband….taking interferon was no better than observation!!!  Fingers crossed for a red herring!  Hang in there.  Celeste

                                                          Bubbles
                                                          Participant

                                                            I am sorry for your worry and it is certainly true that Stage III melanoma patients can progress to Stage IV with lung mets.  However, with no uptake to those lesions, waiting to see progression on scans as well as a second opinion sound like a very reasonable approach (as the other posters have said)!  We learn about many things in our bodies when scanned for melanoma that are "red herrings".  The waiting isn't easy, and you are wise to consider all the possibilities, but hopefully this is just a 'red herring'!  And in case you or your husband start feeling guilty re your decision to "watch and wait" rather than do interferon…this was recently published:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/02/for-stage-iiiii-melanoma-patients.html

                                                            This study showed that in patients like your husband….taking interferon was no better than observation!!!  Fingers crossed for a red herring!  Hang in there.  Celeste

                                                            Bubbles
                                                            Participant

                                                              I am sorry for your worry and it is certainly true that Stage III melanoma patients can progress to Stage IV with lung mets.  However, with no uptake to those lesions, waiting to see progression on scans as well as a second opinion sound like a very reasonable approach (as the other posters have said)!  We learn about many things in our bodies when scanned for melanoma that are "red herrings".  The waiting isn't easy, and you are wise to consider all the possibilities, but hopefully this is just a 'red herring'!  And in case you or your husband start feeling guilty re your decision to "watch and wait" rather than do interferon…this was recently published:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/02/for-stage-iiiii-melanoma-patients.html

                                                              This study showed that in patients like your husband….taking interferon was no better than observation!!!  Fingers crossed for a red herring!  Hang in there.  Celeste

                                                              Mamapegela
                                                              Participant

                                                                Hi-

                                                                You have gotten a lot of thoughtful and accurate responses from people- most lung nodules are nothing to worry about.  I just want to offer one view from the other side so that you are the best informed that you can be.  I was diagnosed with a shallow stage 1 melanoma on my neck in november 2015, developed a swollen lymph node in Feb 16 which was biopsied and positive for melanoma.  A subsequent CLND showed three more nodes positive, making me a stage 3C, which is a higher risk than your husband is at.  

                                                                My baseline scans at the time showed a few small lung nodules.  I was told the same thing, that they were common to have and not necessarily anything to worry about, but that we would follow them.  A PET scan in August showed no uptake.  A repeat PET scan in October showed all lighting up, and they I subsequently had a VATS which proved melanoma.  

                                                                One interesting thing that my oncologist told me is that there is a difference in the quality and detection abilities of different PET scanners, the mobile ones being less powerful than stationary ones.  They usually say that a nodule has to be over 1cm for it to be detectable on PET but none of mine were that large.  My first PET was in a mobile (truck) scanner and my second was at University of Michigan and was a brand new, state of the art scanner.

                                                                I am not telling you this to alarm you.  His oncologist will probably want to monitor them for growth (mine were growing) and even if they do prove to be melanoma, I do not think that the wait made a huge difference.  I am now getting ipi/nivo (just nivo now) and they are shrinking again!

                                                                Wishing you the best,

                                                                Peggy

                                                                Mamapegela
                                                                Participant

                                                                  Hi-

                                                                  You have gotten a lot of thoughtful and accurate responses from people- most lung nodules are nothing to worry about.  I just want to offer one view from the other side so that you are the best informed that you can be.  I was diagnosed with a shallow stage 1 melanoma on my neck in november 2015, developed a swollen lymph node in Feb 16 which was biopsied and positive for melanoma.  A subsequent CLND showed three more nodes positive, making me a stage 3C, which is a higher risk than your husband is at.  

                                                                  My baseline scans at the time showed a few small lung nodules.  I was told the same thing, that they were common to have and not necessarily anything to worry about, but that we would follow them.  A PET scan in August showed no uptake.  A repeat PET scan in October showed all lighting up, and they I subsequently had a VATS which proved melanoma.  

                                                                  One interesting thing that my oncologist told me is that there is a difference in the quality and detection abilities of different PET scanners, the mobile ones being less powerful than stationary ones.  They usually say that a nodule has to be over 1cm for it to be detectable on PET but none of mine were that large.  My first PET was in a mobile (truck) scanner and my second was at University of Michigan and was a brand new, state of the art scanner.

                                                                  I am not telling you this to alarm you.  His oncologist will probably want to monitor them for growth (mine were growing) and even if they do prove to be melanoma, I do not think that the wait made a huge difference.  I am now getting ipi/nivo (just nivo now) and they are shrinking again!

                                                                  Wishing you the best,

                                                                  Peggy

                                                                  Mamapegela
                                                                  Participant

                                                                    Hi-

                                                                    You have gotten a lot of thoughtful and accurate responses from people- most lung nodules are nothing to worry about.  I just want to offer one view from the other side so that you are the best informed that you can be.  I was diagnosed with a shallow stage 1 melanoma on my neck in november 2015, developed a swollen lymph node in Feb 16 which was biopsied and positive for melanoma.  A subsequent CLND showed three more nodes positive, making me a stage 3C, which is a higher risk than your husband is at.  

                                                                    My baseline scans at the time showed a few small lung nodules.  I was told the same thing, that they were common to have and not necessarily anything to worry about, but that we would follow them.  A PET scan in August showed no uptake.  A repeat PET scan in October showed all lighting up, and they I subsequently had a VATS which proved melanoma.  

                                                                    One interesting thing that my oncologist told me is that there is a difference in the quality and detection abilities of different PET scanners, the mobile ones being less powerful than stationary ones.  They usually say that a nodule has to be over 1cm for it to be detectable on PET but none of mine were that large.  My first PET was in a mobile (truck) scanner and my second was at University of Michigan and was a brand new, state of the art scanner.

                                                                    I am not telling you this to alarm you.  His oncologist will probably want to monitor them for growth (mine were growing) and even if they do prove to be melanoma, I do not think that the wait made a huge difference.  I am now getting ipi/nivo (just nivo now) and they are shrinking again!

                                                                    Wishing you the best,

                                                                    Peggy

                                                                    Stlmag
                                                                    Participant

                                                                      My husband was diagnosed Stage III B  Oct 2015 @ upper chest. The melanoma is localized to that area  has been removed 11 times, some with skin grafts- and always returns. One dose of Yervoy and he refused anymore due to reaction. PET & CT scans every 3 months. The last surgery was Oct 2016. Yesterday's PET scan revealed it is back…near clavicle & under pectoral muscle. It is unresectable so he will have Imlygic injections directly into the tumor, every 2 weeks for 6 months…to shrink the tumor and then be removed.  Melanoma is a demon.

                                                                        Mark_DC
                                                                        Participant

                                                                          Dear Anonymous – could you try pembro as an optoin too, in conjunctoin with injections perhaps? since you have tried ipi and its unresectable i think pembro is now an option and could be a great one. I think you can still try it for this type of stage iii

                                                                          good luck mark

                                                                          Mark_DC
                                                                          Participant

                                                                            Dear Anonymous – could you try pembro as an optoin too, in conjunctoin with injections perhaps? since you have tried ipi and its unresectable i think pembro is now an option and could be a great one. I think you can still try it for this type of stage iii

                                                                            good luck mark

                                                                            Mark_DC
                                                                            Participant

                                                                              Dear Anonymous – could you try pembro as an optoin too, in conjunctoin with injections perhaps? since you have tried ipi and its unresectable i think pembro is now an option and could be a great one. I think you can still try it for this type of stage iii

                                                                              good luck mark

                                                                            Stlmag
                                                                            Participant

                                                                              My husband was diagnosed Stage III B  Oct 2015 @ upper chest. The melanoma is localized to that area  has been removed 11 times, some with skin grafts- and always returns. One dose of Yervoy and he refused anymore due to reaction. PET & CT scans every 3 months. The last surgery was Oct 2016. Yesterday's PET scan revealed it is back…near clavicle & under pectoral muscle. It is unresectable so he will have Imlygic injections directly into the tumor, every 2 weeks for 6 months…to shrink the tumor and then be removed.  Melanoma is a demon.

                                                                              Stlmag
                                                                              Participant

                                                                                My husband was diagnosed Stage III B  Oct 2015 @ upper chest. The melanoma is localized to that area  has been removed 11 times, some with skin grafts- and always returns. One dose of Yervoy and he refused anymore due to reaction. PET & CT scans every 3 months. The last surgery was Oct 2016. Yesterday's PET scan revealed it is back…near clavicle & under pectoral muscle. It is unresectable so he will have Imlygic injections directly into the tumor, every 2 weeks for 6 months…to shrink the tumor and then be removed.  Melanoma is a demon.

                                                                                Stlmag
                                                                                Participant

                                                                                  If you have not already done so- get a copy of the PET/CT results and read them for your self- every time. (That is how I found out my husband's margins were NOT clear after one of his 11 surgical prcodeures last year).

                                                                                  Expect a bill from MD Anderson if you do/don't keep appt. -They charged us a good amt  for only  reviewing husband's path slides that  they had requested from home hospital when we made appt. Other options became availabe at the time and we ended up not going to MD.  I had to call and ask for that report to be sent to us since we were charged for it. They did send it.

                                                                                  The " waits" ( aka scan-anxiety) on results are hard. Be sure there is a repeat chest scan in 3 months.

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