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Update After NED Status Removed

Forums Caregiver Community Update After NED Status Removed

  • Post
    jennunicorn
    Participant

      I just got home from meeting with my oncologist to discuss what my options are now that the melanoma is back in my groin… and she still feels very likely that the armpit has some hiding there and the biopsy was probably false negative. We will scan again a little sooner than usual to check on that lymph node, if it shows larger, then we can clinically say it's metastatic and I'll be in the stage 4 boat. For now, I am in the stage 3C unresectable boat.

      She laid out all of the treatment options. My BRAF test wasn't back yet, but she still laid out the targeted therapies as well. There are no trials open currently, there were a couple she mentioned that will be opening in one to two months. One trial that is open now is for NRAS positive patients, and she's having that tested too, just so we have all info we need.

      My deciding factor was to know that if I went with an FDA approved treatment now, would that hinder me from getting into a trial in the future if I need to. She said that the new trials coming out, and many more in the future, will allow patients who have been previously treated with PD-1 drugs, whereas it has been that a lot of trials want PD-1 naive patients only. But, of course as we know, there are still a good chunk of people that try PD-1 drugs and it fails and they have to look somewhere for something new to try, so it makes sense that they will now be allowing those patients to join trials.

      With that info, I decided trying the Ipi/Nivo combo is the best bet, and my oncologist agreed that would be the one she'd choose for me as well. Since I had no major adverse reactions to Ipi, hopefully it stays that way for the 4 infusions that include Ipi. Should be starting in a couple of weeks.

      I do have a brain MRI scheduled tomorrow morning, just to make sure things upstairs still look good. If not, there is a trail open for brain met patients… but hopefully I don't need to consider that.

      It's coming up on my one year cancerversary and I am so incredibly thankful to everyone on here for their knowledge and support. The veterans, the newbies, the caregivers, you all rock, keep being awesome!

       

       

    Viewing 32 reply threads
    • Replies
        knittingirl
        Participant

          Jenn

           

          I am a patient at UCSF myself too ( my Doc is Dr Daud). I was diagnosed 3c in September last year. I followed his advise to keep the tumor and try ipi/nivo. After 3 infusions my tumor( I could feel it under my skin ( left groin) started  to decrease and by Christmas I couldn't feel it. I had bad side effects afterward ( colitis) and my thryroid seemed to be damaged permanently. I am NED and be very grateful to be followed at UCSF. I sincerely hope that it will work for you too. 

          Besr

          knittingirl
          Participant

            Jenn

             

            I am a patient at UCSF myself too ( my Doc is Dr Daud). I was diagnosed 3c in September last year. I followed his advise to keep the tumor and try ipi/nivo. After 3 infusions my tumor( I could feel it under my skin ( left groin) started  to decrease and by Christmas I couldn't feel it. I had bad side effects afterward ( colitis) and my thryroid seemed to be damaged permanently. I am NED and be very grateful to be followed at UCSF. I sincerely hope that it will work for you too. 

            Besr

              jennunicorn
              Participant

                That's great to hear, I have very much enjoyed my treatment at UCSF. Glad you are NED now, hopefully I will get back to that soon! 

                All the best,

                jennunicorn
                Participant

                  That's great to hear, I have very much enjoyed my treatment at UCSF. Glad you are NED now, hopefully I will get back to that soon! 

                  All the best,

                  jennunicorn
                  Participant

                    That's great to hear, I have very much enjoyed my treatment at UCSF. Glad you are NED now, hopefully I will get back to that soon! 

                    All the best,

                  knittingirl
                  Participant

                    Jenn

                     

                    I am a patient at UCSF myself too ( my Doc is Dr Daud). I was diagnosed 3c in September last year. I followed his advise to keep the tumor and try ipi/nivo. After 3 infusions my tumor( I could feel it under my skin ( left groin) started  to decrease and by Christmas I couldn't feel it. I had bad side effects afterward ( colitis) and my thryroid seemed to be damaged permanently. I am NED and be very grateful to be followed at UCSF. I sincerely hope that it will work for you too. 

                    Besr

                    BrianP
                    Participant

                      Jenn,

                      Sounds like you have a great doc in your corner.  For what it's worth I like your decision.  Best of luck going forward.

                      Brian

                      BrianP
                      Participant

                        Jenn,

                        Sounds like you have a great doc in your corner.  For what it's worth I like your decision.  Best of luck going forward.

                        Brian

                        BrianP
                        Participant

                          Jenn,

                          Sounds like you have a great doc in your corner.  For what it's worth I like your decision.  Best of luck going forward.

                          Brian

                          JoshF
                          Participant

                            Jenn-

                            This just sucks! There isn't much else to say. I hate you have to deal with this but there is no choice and you have a good plan. You and I think a lot alike in terms of thinking ahead and trying to keep those approved standard the repair in the back pocket but given the situation ipi/Nivo is best option because of proven results. Every time I went for another opinion every onc agreed. Hence, I've done IL-2, nivo and ipi now for the 3rd time. I'm praying for you and feel that this treatment will knock this crap out. Be well!!!

                            Josh

                            JoshF
                            Participant

                              Jenn-

                              This just sucks! There isn't much else to say. I hate you have to deal with this but there is no choice and you have a good plan. You and I think a lot alike in terms of thinking ahead and trying to keep those approved standard the repair in the back pocket but given the situation ipi/Nivo is best option because of proven results. Every time I went for another opinion every onc agreed. Hence, I've done IL-2, nivo and ipi now for the 3rd time. I'm praying for you and feel that this treatment will knock this crap out. Be well!!!

                              Josh

                                jennunicorn
                                Participant

                                  Thank you so much Josh! You're a real rock star and I hope this newest treatment adventure you're going through is the one that kicks mels butt for good!!

                                  jennunicorn
                                  Participant

                                    Thank you so much Josh! You're a real rock star and I hope this newest treatment adventure you're going through is the one that kicks mels butt for good!!

                                    jennunicorn
                                    Participant

                                      Thank you so much Josh! You're a real rock star and I hope this newest treatment adventure you're going through is the one that kicks mels butt for good!!

                                    JoshF
                                    Participant

                                      Jenn-

                                      This just sucks! There isn't much else to say. I hate you have to deal with this but there is no choice and you have a good plan. You and I think a lot alike in terms of thinking ahead and trying to keep those approved standard the repair in the back pocket but given the situation ipi/Nivo is best option because of proven results. Every time I went for another opinion every onc agreed. Hence, I've done IL-2, nivo and ipi now for the 3rd time. I'm praying for you and feel that this treatment will knock this crap out. Be well!!!

                                      Josh

                                      Bubbles
                                      Participant

                                        Hy Jenn, 

                                        Hate that you have to deal with all this. Your oncology team seems sharp. The ipi/nivo combo as a choice for treatment seems wise and I am glad that it is an option for you! You have handled all this with grace, steadfastness, and determination. I know it has not been easy. Hang in there! I wish you well as your process continues. Love, c

                                        Bubbles
                                        Participant

                                          Hy Jenn, 

                                          Hate that you have to deal with all this. Your oncology team seems sharp. The ipi/nivo combo as a choice for treatment seems wise and I am glad that it is an option for you! You have handled all this with grace, steadfastness, and determination. I know it has not been easy. Hang in there! I wish you well as your process continues. Love, c

                                          Bubbles
                                          Participant

                                            Hy Jenn, 

                                            Hate that you have to deal with all this. Your oncology team seems sharp. The ipi/nivo combo as a choice for treatment seems wise and I am glad that it is an option for you! You have handled all this with grace, steadfastness, and determination. I know it has not been easy. Hang in there! I wish you well as your process continues. Love, c

                                              jennunicorn
                                              Participant

                                                Thank you Celeste, your resarch and blog keep me going when I need to fill up my brain tank.

                                                jennunicorn
                                                Participant

                                                  Thank you Celeste, your resarch and blog keep me going when I need to fill up my brain tank.

                                                  jennunicorn
                                                  Participant

                                                    Thank you Celeste, your resarch and blog keep me going when I need to fill up my brain tank.

                                                  debwray
                                                  Participant

                                                    Hi Jenn,

                                                    Feel for you. How do you manage to sound so positive reporting this ? Could do with a bit of this myself. Its a year since I leapt into stage 3 and have a consult set up for multiple scan results on Monday. Expecting to be told Ned to stage 4 …as after ct scan had MRI for suspect spots in liver.

                                                    If so will have failed pembro as stage 3 ,and am Braf negative. But we have no choice in this, so will continue to seek answers. Haven't been given treatment options yet- diagnosis usually first but am leaning towards IPI nivo combo too. Have had lots of time between scans to look at what next possibilities. Am not unsure about brain scan if offered as if positive even with no symptoms would mrean no driving and that would be another whammy.

                                                    Will try and summon up your dignity and grace and will watch for your progress reports.

                                                    Good luck

                                                      jennunicorn
                                                      Participant

                                                        Thank you for your kind words. I hope everything works out well for you. The combo has highest success rates, so it's a great place to start.

                                                        Sending you strength and positive vibes,

                                                        debwray
                                                        Participant

                                                          Thanks Jenn,

                                                          It is so scary knowing the stage Iv journey begins in earnest on Monday – odds on. Am so aware of the hurt and pain the diagnosis brings to the ones I love so very much and am trying hard to gather up as much strength and dignity as I can muster to look this in the eye and find a pathway forward in to a much more precarious future. Still have milestones to aim for..21 st birthdays . graduations etc Daren't really look too far to the future and am trying to live one day at a time for now. Will be better when I know how bad it is and have a plan in place. Imagining the worst is not a good place to be ,but have sleeping pills to help a restless mind . Not a long term solution I know but good for the horrible wait between knowing something is wrong but not the full extent…..

                                                          Best wishes

                                                          Deb

                                                          debwray
                                                          Participant

                                                            Thanks Jenn,

                                                            It is so scary knowing the stage Iv journey begins in earnest on Monday – odds on. Am so aware of the hurt and pain the diagnosis brings to the ones I love so very much and am trying hard to gather up as much strength and dignity as I can muster to look this in the eye and find a pathway forward in to a much more precarious future. Still have milestones to aim for..21 st birthdays . graduations etc Daren't really look too far to the future and am trying to live one day at a time for now. Will be better when I know how bad it is and have a plan in place. Imagining the worst is not a good place to be ,but have sleeping pills to help a restless mind . Not a long term solution I know but good for the horrible wait between knowing something is wrong but not the full extent…..

                                                            Best wishes

                                                            Deb

                                                            debwray
                                                            Participant

                                                              Thanks Jenn,

                                                              It is so scary knowing the stage Iv journey begins in earnest on Monday – odds on. Am so aware of the hurt and pain the diagnosis brings to the ones I love so very much and am trying hard to gather up as much strength and dignity as I can muster to look this in the eye and find a pathway forward in to a much more precarious future. Still have milestones to aim for..21 st birthdays . graduations etc Daren't really look too far to the future and am trying to live one day at a time for now. Will be better when I know how bad it is and have a plan in place. Imagining the worst is not a good place to be ,but have sleeping pills to help a restless mind . Not a long term solution I know but good for the horrible wait between knowing something is wrong but not the full extent…..

                                                              Best wishes

                                                              Deb

                                                              debwray
                                                              Participant

                                                                Thanks Jenn,

                                                                It is so scary knowing the stage Iv journey begins in earnest on Monday – odds on. Am so aware of the hurt and pain the diagnosis brings to the ones I love so very much and am trying hard to gather up as much strength and dignity as I can muster to look this in the eye and find a pathway forward in to a much more precarious future. Still have milestones to aim for..21 st birthdays . graduations etc Daren't really look too far to the future and am trying to live one day at a time for now. Will be better when I know how bad it is and have a plan in place. Imagining the worst is not a good place to be ,but have sleeping pills to help a restless mind . Not a long term solution I know but good for the horrible wait between knowing something is wrong but not the full extent…..

                                                                Best wishes

                                                                Deb

                                                                debwray
                                                                Participant

                                                                  Thanks Jenn,

                                                                  It is so scary knowing the stage Iv journey begins in earnest on Monday – odds on. Am so aware of the hurt and pain the diagnosis brings to the ones I love so very much and am trying hard to gather up as much strength and dignity as I can muster to look this in the eye and find a pathway forward in to a much more precarious future. Still have milestones to aim for..21 st birthdays . graduations etc Daren't really look too far to the future and am trying to live one day at a time for now. Will be better when I know how bad it is and have a plan in place. Imagining the worst is not a good place to be ,but have sleeping pills to help a restless mind . Not a long term solution I know but good for the horrible wait between knowing something is wrong but not the full extent…..

                                                                  Best wishes

                                                                  Deb

                                                                  debwray
                                                                  Participant

                                                                    Thanks Jenn,

                                                                    It is so scary knowing the stage Iv journey begins in earnest on Monday – odds on. Am so aware of the hurt and pain the diagnosis brings to the ones I love so very much and am trying hard to gather up as much strength and dignity as I can muster to look this in the eye and find a pathway forward in to a much more precarious future. Still have milestones to aim for..21 st birthdays . graduations etc Daren't really look too far to the future and am trying to live one day at a time for now. Will be better when I know how bad it is and have a plan in place. Imagining the worst is not a good place to be ,but have sleeping pills to help a restless mind . Not a long term solution I know but good for the horrible wait between knowing something is wrong but not the full extent…..

                                                                    Best wishes

                                                                    Deb

                                                                    jennunicorn
                                                                    Participant

                                                                      Thank you for your kind words. I hope everything works out well for you. The combo has highest success rates, so it's a great place to start.

                                                                      Sending you strength and positive vibes,

                                                                      jennunicorn
                                                                      Participant

                                                                        Thank you for your kind words. I hope everything works out well for you. The combo has highest success rates, so it's a great place to start.

                                                                        Sending you strength and positive vibes,

                                                                      debwray
                                                                      Participant

                                                                        Hi Jenn,

                                                                        Feel for you. How do you manage to sound so positive reporting this ? Could do with a bit of this myself. Its a year since I leapt into stage 3 and have a consult set up for multiple scan results on Monday. Expecting to be told Ned to stage 4 …as after ct scan had MRI for suspect spots in liver.

                                                                        If so will have failed pembro as stage 3 ,and am Braf negative. But we have no choice in this, so will continue to seek answers. Haven't been given treatment options yet- diagnosis usually first but am leaning towards IPI nivo combo too. Have had lots of time between scans to look at what next possibilities. Am not unsure about brain scan if offered as if positive even with no symptoms would mrean no driving and that would be another whammy.

                                                                        Will try and summon up your dignity and grace and will watch for your progress reports.

                                                                        Good luck

                                                                        debwray
                                                                        Participant

                                                                          Hi Jenn,

                                                                          Feel for you. How do you manage to sound so positive reporting this ? Could do with a bit of this myself. Its a year since I leapt into stage 3 and have a consult set up for multiple scan results on Monday. Expecting to be told Ned to stage 4 …as after ct scan had MRI for suspect spots in liver.

                                                                          If so will have failed pembro as stage 3 ,and am Braf negative. But we have no choice in this, so will continue to seek answers. Haven't been given treatment options yet- diagnosis usually first but am leaning towards IPI nivo combo too. Have had lots of time between scans to look at what next possibilities. Am not unsure about brain scan if offered as if positive even with no symptoms would mrean no driving and that would be another whammy.

                                                                          Will try and summon up your dignity and grace and will watch for your progress reports.

                                                                          Good luck

                                                                          Polymath
                                                                          Participant

                                                                            Hi Jenn,

                                                                            Sorry to hear the crap got crappier.  As always you hold your head up high and attack with calm and thoughtful demeanor.  You don't let fear drive your emotions.  Good for you.  I think going after Mr. Mel with a big stick while he's still small is a smart strategy.  The combo has the best track record, and as a partial responder after failing everything else, I remain a believer.  That said, UCSF has quite a few trials going on and it sounds like the one coming up in a couple months is also the one I am looking at, to move to full-responder status.  We may be riding in the same boat soon.  Best to you in the battle.

                                                                            Gary

                                                                             

                                                                             

                                                                            Polymath
                                                                            Participant

                                                                              Hi Jenn,

                                                                              Sorry to hear the crap got crappier.  As always you hold your head up high and attack with calm and thoughtful demeanor.  You don't let fear drive your emotions.  Good for you.  I think going after Mr. Mel with a big stick while he's still small is a smart strategy.  The combo has the best track record, and as a partial responder after failing everything else, I remain a believer.  That said, UCSF has quite a few trials going on and it sounds like the one coming up in a couple months is also the one I am looking at, to move to full-responder status.  We may be riding in the same boat soon.  Best to you in the battle.

                                                                              Gary

                                                                               

                                                                               

                                                                                jennunicorn
                                                                                Participant

                                                                                  Thank you Gary, I hope one of these trials coming up is the magic bullet for you!

                                                                                  jennunicorn
                                                                                  Participant

                                                                                    Thank you Gary, I hope one of these trials coming up is the magic bullet for you!

                                                                                    jennunicorn
                                                                                    Participant

                                                                                      Thank you Gary, I hope one of these trials coming up is the magic bullet for you!

                                                                                    Polymath
                                                                                    Participant

                                                                                      Hi Jenn,

                                                                                      Sorry to hear the crap got crappier.  As always you hold your head up high and attack with calm and thoughtful demeanor.  You don't let fear drive your emotions.  Good for you.  I think going after Mr. Mel with a big stick while he's still small is a smart strategy.  The combo has the best track record, and as a partial responder after failing everything else, I remain a believer.  That said, UCSF has quite a few trials going on and it sounds like the one coming up in a couple months is also the one I am looking at, to move to full-responder status.  We may be riding in the same boat soon.  Best to you in the battle.

                                                                                      Gary

                                                                                       

                                                                                       

                                                                                      jenny22
                                                                                      Participant

                                                                                        Hey Jenn-

                                                                                        Soo very sorry to see your update…..I was so hoping for better news.

                                                                                        I am hoping that the IPI/NIVO combo will be exacgly what you neeed to get rid of this once and for all. 

                                                                                        You are a great researcher, and always have such a postitive attitude!

                                                                                        I am keeping my fingers crossed for you (and this treatment)…..

                                                                                        All my best,

                                                                                        Jenny

                                                                                         

                                                                                         

                                                                                        jenny22
                                                                                        Participant

                                                                                          Hey Jenn-

                                                                                          Soo very sorry to see your update…..I was so hoping for better news.

                                                                                          I am hoping that the IPI/NIVO combo will be exacgly what you neeed to get rid of this once and for all. 

                                                                                          You are a great researcher, and always have such a postitive attitude!

                                                                                          I am keeping my fingers crossed for you (and this treatment)…..

                                                                                          All my best,

                                                                                          Jenny

                                                                                           

                                                                                           

                                                                                          jenny22
                                                                                          Participant

                                                                                            Hey Jenn-

                                                                                            Soo very sorry to see your update…..I was so hoping for better news.

                                                                                            I am hoping that the IPI/NIVO combo will be exacgly what you neeed to get rid of this once and for all. 

                                                                                            You are a great researcher, and always have such a postitive attitude!

                                                                                            I am keeping my fingers crossed for you (and this treatment)…..

                                                                                            All my best,

                                                                                            Jenny

                                                                                             

                                                                                             

                                                                                            keepthefaith11
                                                                                            Participant
                                                                                              Jenn, so sorry you are dealing with this! I think the treatment plan sounds like the best bet. He did hard since it is still under control and confined to lymph nodes. Hopefully the treatment will knock this out of your system for ever. Wishing you the very best as always!

                                                                                              Annie

                                                                                              keepthefaith11
                                                                                              Participant
                                                                                                Jenn, so sorry you are dealing with this! I think the treatment plan sounds like the best bet. He did hard since it is still under control and confined to lymph nodes. Hopefully the treatment will knock this out of your system for ever. Wishing you the very best as always!

                                                                                                Annie

                                                                                                keepthefaith11
                                                                                                Participant
                                                                                                  Jenn, so sorry you are dealing with this! I think the treatment plan sounds like the best bet. He did hard since it is still under control and confined to lymph nodes. Hopefully the treatment will knock this out of your system for ever. Wishing you the very best as always!

                                                                                                  Annie

                                                                                                  slh4448
                                                                                                  Participant

                                                                                                    Jenn,

                                                                                                    Sorry to hear that you are now moving into another unchartered territory with your diagnosis. Sounds like the combo therapy could be good for you…I hope that it will be. Best of luck and I know that you will keep us all updated!

                                                                                                    Stacy

                                                                                                     

                                                                                                    slh4448
                                                                                                    Participant

                                                                                                      Jenn,

                                                                                                      Sorry to hear that you are now moving into another unchartered territory with your diagnosis. Sounds like the combo therapy could be good for you…I hope that it will be. Best of luck and I know that you will keep us all updated!

                                                                                                      Stacy

                                                                                                       

                                                                                                      slh4448
                                                                                                      Participant

                                                                                                        Jenn,

                                                                                                        Sorry to hear that you are now moving into another unchartered territory with your diagnosis. Sounds like the combo therapy could be good for you…I hope that it will be. Best of luck and I know that you will keep us all updated!

                                                                                                        Stacy

                                                                                                         

                                                                                                          jennunicorn
                                                                                                          Participant

                                                                                                            Thank you Stacy, hope you're feeling better!

                                                                                                            jennunicorn
                                                                                                            Participant

                                                                                                              Thank you Stacy, hope you're feeling better!

                                                                                                              jennunicorn
                                                                                                              Participant

                                                                                                                Thank you Stacy, hope you're feeling better!

                                                                                                              vickiaa0529
                                                                                                              Participant

                                                                                                                Hi Jenn 

                                                                                                                So sorry for the news. I may be on this combo with you so you are not going to be alone. We can battle this together. Sending hugs and positive thoughts 

                                                                                                                 

                                                                                                                Vicki

                                                                                                                vickiaa0529
                                                                                                                Participant

                                                                                                                  Hi Jenn 

                                                                                                                  So sorry for the news. I may be on this combo with you so you are not going to be alone. We can battle this together. Sending hugs and positive thoughts 

                                                                                                                   

                                                                                                                  Vicki

                                                                                                                  vickiaa0529
                                                                                                                  Participant

                                                                                                                    Hi Jenn 

                                                                                                                    So sorry for the news. I may be on this combo with you so you are not going to be alone. We can battle this together. Sending hugs and positive thoughts 

                                                                                                                     

                                                                                                                    Vicki

                                                                                                                    Aida Ballesteros
                                                                                                                    Participant
                                                                                                                      Keep positive!! Thats the first step!! Today someone told my dad about transfer factors, have you tried them??? The Dr told my dad a friend of his had bone cáncer and he only took that therapy and has been NED for years now!
                                                                                                                      Aida Ballesteros
                                                                                                                      Participant
                                                                                                                        Keep positive!! Thats the first step!! Today someone told my dad about transfer factors, have you tried them??? The Dr told my dad a friend of his had bone cáncer and he only took that therapy and has been NED for years now!
                                                                                                                        Aida Ballesteros
                                                                                                                        Participant
                                                                                                                          Keep positive!! Thats the first step!! Today someone told my dad about transfer factors, have you tried them??? The Dr told my dad a friend of his had bone cáncer and he only took that therapy and has been NED for years now!
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