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what do you guys think
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what do you guys think

› Forums › General Melanoma Community › what do you guys think

  • Post
    • August 21, 2015 at 3:06 pm
    momof4boys
    Participant

      So I was diagnosed 3b in June 2013 when it was found on my right calf. Snb tested positive so I had a complete lymphadectomy of right groin. In Oct I started Ipi and was able to complete all doses including maintenance doses. Since Im on a trial I get scanned every 3 months with a ct and every 6 or 12 with a pet. So I had a ct in May, Pet in June and both were fine. I had a ct yesterday that showed a lung mass on each lung plus the lymph nodes are enlarged. One was 1.4 cm and the other was 1cm. They have decided to go down my throat to biopsy the lymph nodes. I just want some input here, seems like pretty rapid growth. I'm wondering about this biopsy and the pain level with that as well as if it does turn out to be melanoma what path do you all think I should take? I'm thinking since these are over 1cm and there is lymph envolvement that it probably is melanoma. Any input here is greatly appreciated. I am a mom to 4 teenage boys and I feel like I need to be on top of my game here.

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    • Replies
        • August 21, 2015 at 3:48 pm
        Bubbles
        Participant

          Sorry you are dealing with this after how proactive you have been.  Hopefully, it will NOT be melanoma, but it is certainly best to check.  I had a bronchoscopy in order to biopsy a lung lesion.  I was sore generally in my chest (probably from coughing during the procedure…though I certainly was not aware of that or awake during it) for about a day or two after the procedure.  Missed no work other than the day of.  There is generally no pain related to the biopsy specifically.  If you have actual anesthesia you will probably have no soreness at all and no sequelae.  I had more of a "twilight sleep" for my procedure which allowed for the coughing. 

          If the biopsy does prove to be melanoma, I would certainly make sure I got an MRI of my brain.  CT's and PET's are not as detailed radiographic reports of the brain.  It sounds like your docs are top notch so they will probably agree with this if not recommend it themselves…not to mention have a plan for your next treatment if you need it.  Your BRAF status will be important in determining your next step.  Taking BRAFi or anti-PD1 would seem logical should you need it. 

          Fingers crossed for you and wishing you my best. Celeste

            • August 22, 2015 at 1:26 am
            momof4boys
            Participant

              Bubbles,

              I know you are very knowledgeable about this but my melanoma onc said it is either melanoma or it could be this sort of mold that they see in this area but that usually calcifies and she didn't see anything like that. Given that this has all happened in the last 2 months and they are over 1 cm, what do you think about that. I'm trying to stay hopeful but I know how this disease is. I tested braf negative.

              • August 22, 2015 at 2:26 pm
              Bubbles
              Participant

                I'm not sure what your doc was referring to, but I would guess aspergillus. My docs proposed that as a possibility for my lung lesion as well. Nodules and blips show up on scans on scans all the time…and for many are simply that…lumps and bumps and benign cysts that cause no problems. However, once you've entered Melanoma Land, that is not an assumption you can make. Once melanoma is part of your world you have to make sure exactly what you are dealing with. No assumptions are allowed! And you are doing that! Given your history and description, it does seem likely that you are dealing with melanoma. But….you can't know…until you KNOW.

                That being the case…you already have a good plan. Get the biopsy and see what it says. BRAFi are out. Ok…that boils down to anti-PD1 or a trial. Kyle and some others have made a good point about trials….which is…..sometimes you can get access to drugs or drug combo's via a trial that you would be disqualified from if you take an anti-PD1 product first. Whereas, if you do the trial fist you should be able to come back and take anti-PD1 later if you need it since it is FDA approved. A very dificult decision in this case. Currently with its low side effect profile and average 40% response rate, anti-PD1 is about the single best drug going. The ipi-nivo combo does better, but with increased side effects…and given your history I don't know that it would be an option for you. There are other combo's in trials currently that look very promising…like the one Kyle referred to. Combo's are likely to be the way melanoma is treated in the future according to most experts. But…which ones, what mixture?? Not set in stone yet. I knew that ipi would be on the market "soon" when I signed up for my nivo trial. I asked my doc…"Why should I take part in experiment when we know ipi does better than anything else, so far?"  He replied that he thought it was going to do much better than ipi with fewer side effects. I believed him and went with it. Of course, I had done my homework and 'he' was Dr. Webber at Moffitt.  

                That is all you can do. Get your biopsy. If positive…do your homework.  (You are already doing both of those!). Consult with a melanoma expert. Make your choice. Know then, that you have done your best for you and yours. Don't know if this helps. Will be thinking of you. Celeste

                • August 22, 2015 at 2:26 pm
                Bubbles
                Participant

                  I'm not sure what your doc was referring to, but I would guess aspergillus. My docs proposed that as a possibility for my lung lesion as well. Nodules and blips show up on scans on scans all the time…and for many are simply that…lumps and bumps and benign cysts that cause no problems. However, once you've entered Melanoma Land, that is not an assumption you can make. Once melanoma is part of your world you have to make sure exactly what you are dealing with. No assumptions are allowed! And you are doing that! Given your history and description, it does seem likely that you are dealing with melanoma. But….you can't know…until you KNOW.

                  That being the case…you already have a good plan. Get the biopsy and see what it says. BRAFi are out. Ok…that boils down to anti-PD1 or a trial. Kyle and some others have made a good point about trials….which is…..sometimes you can get access to drugs or drug combo's via a trial that you would be disqualified from if you take an anti-PD1 product first. Whereas, if you do the trial fist you should be able to come back and take anti-PD1 later if you need it since it is FDA approved. A very dificult decision in this case. Currently with its low side effect profile and average 40% response rate, anti-PD1 is about the single best drug going. The ipi-nivo combo does better, but with increased side effects…and given your history I don't know that it would be an option for you. There are other combo's in trials currently that look very promising…like the one Kyle referred to. Combo's are likely to be the way melanoma is treated in the future according to most experts. But…which ones, what mixture?? Not set in stone yet. I knew that ipi would be on the market "soon" when I signed up for my nivo trial. I asked my doc…"Why should I take part in experiment when we know ipi does better than anything else, so far?"  He replied that he thought it was going to do much better than ipi with fewer side effects. I believed him and went with it. Of course, I had done my homework and 'he' was Dr. Webber at Moffitt.  

                  That is all you can do. Get your biopsy. If positive…do your homework.  (You are already doing both of those!). Consult with a melanoma expert. Make your choice. Know then, that you have done your best for you and yours. Don't know if this helps. Will be thinking of you. Celeste

                  • August 22, 2015 at 2:26 pm
                  Bubbles
                  Participant

                    I'm not sure what your doc was referring to, but I would guess aspergillus. My docs proposed that as a possibility for my lung lesion as well. Nodules and blips show up on scans on scans all the time…and for many are simply that…lumps and bumps and benign cysts that cause no problems. However, once you've entered Melanoma Land, that is not an assumption you can make. Once melanoma is part of your world you have to make sure exactly what you are dealing with. No assumptions are allowed! And you are doing that! Given your history and description, it does seem likely that you are dealing with melanoma. But….you can't know…until you KNOW.

                    That being the case…you already have a good plan. Get the biopsy and see what it says. BRAFi are out. Ok…that boils down to anti-PD1 or a trial. Kyle and some others have made a good point about trials….which is…..sometimes you can get access to drugs or drug combo's via a trial that you would be disqualified from if you take an anti-PD1 product first. Whereas, if you do the trial fist you should be able to come back and take anti-PD1 later if you need it since it is FDA approved. A very dificult decision in this case. Currently with its low side effect profile and average 40% response rate, anti-PD1 is about the single best drug going. The ipi-nivo combo does better, but with increased side effects…and given your history I don't know that it would be an option for you. There are other combo's in trials currently that look very promising…like the one Kyle referred to. Combo's are likely to be the way melanoma is treated in the future according to most experts. But…which ones, what mixture?? Not set in stone yet. I knew that ipi would be on the market "soon" when I signed up for my nivo trial. I asked my doc…"Why should I take part in experiment when we know ipi does better than anything else, so far?"  He replied that he thought it was going to do much better than ipi with fewer side effects. I believed him and went with it. Of course, I had done my homework and 'he' was Dr. Webber at Moffitt.  

                    That is all you can do. Get your biopsy. If positive…do your homework.  (You are already doing both of those!). Consult with a melanoma expert. Make your choice. Know then, that you have done your best for you and yours. Don't know if this helps. Will be thinking of you. Celeste

                    • August 22, 2015 at 1:26 am
                    momof4boys
                    Participant

                      Bubbles,

                      I know you are very knowledgeable about this but my melanoma onc said it is either melanoma or it could be this sort of mold that they see in this area but that usually calcifies and she didn't see anything like that. Given that this has all happened in the last 2 months and they are over 1 cm, what do you think about that. I'm trying to stay hopeful but I know how this disease is. I tested braf negative.

                      • August 22, 2015 at 1:26 am
                      momof4boys
                      Participant

                        Bubbles,

                        I know you are very knowledgeable about this but my melanoma onc said it is either melanoma or it could be this sort of mold that they see in this area but that usually calcifies and she didn't see anything like that. Given that this has all happened in the last 2 months and they are over 1 cm, what do you think about that. I'm trying to stay hopeful but I know how this disease is. I tested braf negative.

                      • August 21, 2015 at 3:48 pm
                      Bubbles
                      Participant

                        Sorry you are dealing with this after how proactive you have been.  Hopefully, it will NOT be melanoma, but it is certainly best to check.  I had a bronchoscopy in order to biopsy a lung lesion.  I was sore generally in my chest (probably from coughing during the procedure…though I certainly was not aware of that or awake during it) for about a day or two after the procedure.  Missed no work other than the day of.  There is generally no pain related to the biopsy specifically.  If you have actual anesthesia you will probably have no soreness at all and no sequelae.  I had more of a "twilight sleep" for my procedure which allowed for the coughing. 

                        If the biopsy does prove to be melanoma, I would certainly make sure I got an MRI of my brain.  CT's and PET's are not as detailed radiographic reports of the brain.  It sounds like your docs are top notch so they will probably agree with this if not recommend it themselves…not to mention have a plan for your next treatment if you need it.  Your BRAF status will be important in determining your next step.  Taking BRAFi or anti-PD1 would seem logical should you need it. 

                        Fingers crossed for you and wishing you my best. Celeste

                        • August 21, 2015 at 3:48 pm
                        Bubbles
                        Participant

                          Sorry you are dealing with this after how proactive you have been.  Hopefully, it will NOT be melanoma, but it is certainly best to check.  I had a bronchoscopy in order to biopsy a lung lesion.  I was sore generally in my chest (probably from coughing during the procedure…though I certainly was not aware of that or awake during it) for about a day or two after the procedure.  Missed no work other than the day of.  There is generally no pain related to the biopsy specifically.  If you have actual anesthesia you will probably have no soreness at all and no sequelae.  I had more of a "twilight sleep" for my procedure which allowed for the coughing. 

                          If the biopsy does prove to be melanoma, I would certainly make sure I got an MRI of my brain.  CT's and PET's are not as detailed radiographic reports of the brain.  It sounds like your docs are top notch so they will probably agree with this if not recommend it themselves…not to mention have a plan for your next treatment if you need it.  Your BRAF status will be important in determining your next step.  Taking BRAFi or anti-PD1 would seem logical should you need it. 

                          Fingers crossed for you and wishing you my best. Celeste

                          • August 21, 2015 at 4:53 pm
                          kylez
                          Participant

                            I also had a brochoscopy back in February 2014. They put me in a twilight state. I actually came out of the twilight state slightly for a couple of minutes, at least enough to feel a couple of the needle biopsies happen… still no big deal and wasn't painful. I was at an academic medical center and a bunch of students were around and from what I was hearing, I think the students were actually the ones doing it under the main doctor's supervision. Anyhow… even with all that, it was straightfoward for me. I also don't remember if there was pain or soreness for the next day or two, so if there was, it couldn't have been much.

                            I'd started looking for a clinical trial even before the biopsy results had come back, and in my case turned out as more melanoma. The lymph node they were biopsied was 2 cm at the time of bronchoscopy. Four weeks later is was 3.0 cm. I've been on the nivolumab/lirilumab since then. Knock on wood, that trial's been good for me. The "target" tumor stabilized at around 3.5 cm since around the 3rd or 4th month of the trial. 

                            • August 21, 2015 at 4:53 pm
                            kylez
                            Participant

                              I also had a brochoscopy back in February 2014. They put me in a twilight state. I actually came out of the twilight state slightly for a couple of minutes, at least enough to feel a couple of the needle biopsies happen… still no big deal and wasn't painful. I was at an academic medical center and a bunch of students were around and from what I was hearing, I think the students were actually the ones doing it under the main doctor's supervision. Anyhow… even with all that, it was straightfoward for me. I also don't remember if there was pain or soreness for the next day or two, so if there was, it couldn't have been much.

                              I'd started looking for a clinical trial even before the biopsy results had come back, and in my case turned out as more melanoma. The lymph node they were biopsied was 2 cm at the time of bronchoscopy. Four weeks later is was 3.0 cm. I've been on the nivolumab/lirilumab since then. Knock on wood, that trial's been good for me. The "target" tumor stabilized at around 3.5 cm since around the 3rd or 4th month of the trial. 

                              • August 21, 2015 at 4:53 pm
                              kylez
                              Participant

                                I also had a brochoscopy back in February 2014. They put me in a twilight state. I actually came out of the twilight state slightly for a couple of minutes, at least enough to feel a couple of the needle biopsies happen… still no big deal and wasn't painful. I was at an academic medical center and a bunch of students were around and from what I was hearing, I think the students were actually the ones doing it under the main doctor's supervision. Anyhow… even with all that, it was straightfoward for me. I also don't remember if there was pain or soreness for the next day or two, so if there was, it couldn't have been much.

                                I'd started looking for a clinical trial even before the biopsy results had come back, and in my case turned out as more melanoma. The lymph node they were biopsied was 2 cm at the time of bronchoscopy. Four weeks later is was 3.0 cm. I've been on the nivolumab/lirilumab since then. Knock on wood, that trial's been good for me. The "target" tumor stabilized at around 3.5 cm since around the 3rd or 4th month of the trial. 

                                • August 23, 2015 at 10:32 am
                                Jubes
                                Participant

                                  So sorry to hear about this but hope it turns out to be something other than new Mel mets. I had a bronchoscope when first diagnosed as they thought it was lung cancer. They took biopsies of the nodes but couldn't get to the tumour in my lungs as it was too deep. So they did an image guided lung biopsy, that I had to be awake for, as they need you to breathe in and out for certain intervals. They did a local and it was fine. For me the bronchoscope was pretty uncomfortable as I was also only sedated for that and they couldn't do it under a general. I was coughing a lot at the time anyway because of the cancer but I must have coughed an awful lot during the procedure as I could hear the doctor requesting the sedative be topped up while I was coughing. Don't get me wrong. It was all fine but they told me it would be nothing, so not quite nothing. I would feel exactly as you and i would be glad to be braf negative and be able to get straight on to keytruda or the ipi/nivo combo. My lung met was 7.9 cm and after a year of keytruda it is down to 3cm. I had Mel in my chest nodes and it disappeared. You sound like you are doing everything right and I am really hoping this is melanomas last attack on you if it is more melanoma. All the best Anne-Louise 

                                  • August 23, 2015 at 10:32 am
                                  Jubes
                                  Participant

                                    So sorry to hear about this but hope it turns out to be something other than new Mel mets. I had a bronchoscope when first diagnosed as they thought it was lung cancer. They took biopsies of the nodes but couldn't get to the tumour in my lungs as it was too deep. So they did an image guided lung biopsy, that I had to be awake for, as they need you to breathe in and out for certain intervals. They did a local and it was fine. For me the bronchoscope was pretty uncomfortable as I was also only sedated for that and they couldn't do it under a general. I was coughing a lot at the time anyway because of the cancer but I must have coughed an awful lot during the procedure as I could hear the doctor requesting the sedative be topped up while I was coughing. Don't get me wrong. It was all fine but they told me it would be nothing, so not quite nothing. I would feel exactly as you and i would be glad to be braf negative and be able to get straight on to keytruda or the ipi/nivo combo. My lung met was 7.9 cm and after a year of keytruda it is down to 3cm. I had Mel in my chest nodes and it disappeared. You sound like you are doing everything right and I am really hoping this is melanomas last attack on you if it is more melanoma. All the best Anne-Louise 

                                    • August 23, 2015 at 10:32 am
                                    Jubes
                                    Participant

                                      So sorry to hear about this but hope it turns out to be something other than new Mel mets. I had a bronchoscope when first diagnosed as they thought it was lung cancer. They took biopsies of the nodes but couldn't get to the tumour in my lungs as it was too deep. So they did an image guided lung biopsy, that I had to be awake for, as they need you to breathe in and out for certain intervals. They did a local and it was fine. For me the bronchoscope was pretty uncomfortable as I was also only sedated for that and they couldn't do it under a general. I was coughing a lot at the time anyway because of the cancer but I must have coughed an awful lot during the procedure as I could hear the doctor requesting the sedative be topped up while I was coughing. Don't get me wrong. It was all fine but they told me it would be nothing, so not quite nothing. I would feel exactly as you and i would be glad to be braf negative and be able to get straight on to keytruda or the ipi/nivo combo. My lung met was 7.9 cm and after a year of keytruda it is down to 3cm. I had Mel in my chest nodes and it disappeared. You sound like you are doing everything right and I am really hoping this is melanomas last attack on you if it is more melanoma. All the best Anne-Louise 

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