Update After NED Status Removed
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Update After NED Status Removed

› Forums › Caregiver Community › Update After NED Status Removed

  • Post
    • October 14, 2016 at 12:12 am
    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
      • October 14, 2016 at 12:43 am
      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

      • October 14, 2016 at 12:43 am
      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

      • October 14, 2016 at 12:43 am
      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

        • October 14, 2016 at 1:47 am
        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,

        • October 14, 2016 at 1:47 am
        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,

        • October 14, 2016 at 1:47 am
        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,

      • October 14, 2016 at 1:21 am
      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

      • October 14, 2016 at 1:21 am
      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

      • October 14, 2016 at 1:21 am
      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

      • October 14, 2016 at 2:04 am
      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

      • October 14, 2016 at 2:04 am
      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

      • October 14, 2016 at 2:04 am
      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

        • October 14, 2016 at 2:15 am
        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!!

        • October 14, 2016 at 2:15 am
        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!!

        • October 14, 2016 at 2:15 am
        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!!

      • October 14, 2016 at 2:14 pm
      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

        • October 14, 2016 at 7:30 pm
        jennunicorn
        Participant

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

        • October 14, 2016 at 7:30 pm
        jennunicorn
        Participant

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

        • October 14, 2016 at 7:30 pm
        jennunicorn
        Participant

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

      • October 14, 2016 at 2:14 pm
      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

      • October 14, 2016 at 2:14 pm
      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

      • October 14, 2016 at 3:57 pm
      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

        • October 14, 2016 at 7:28 pm
        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,

        • October 14, 2016 at 7:28 pm
        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,

        • October 14, 2016 at 10:30 pm
        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

        • October 14, 2016 at 10:30 pm
        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

        • October 14, 2016 at 10:30 pm
        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

        • October 14, 2016 at 10:30 pm
        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

        • October 14, 2016 at 10:30 pm
        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

        • October 14, 2016 at 10:30 pm
        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

        • October 14, 2016 at 7:28 pm
        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,

      • October 14, 2016 at 3:57 pm
      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

      • October 14, 2016 at 3:57 pm
      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

      • October 14, 2016 at 5:43 pm
      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

       

       

      • October 14, 2016 at 5:43 pm
      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

       

       

        • October 14, 2016 at 7:27 pm
        jennunicorn
        Participant

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

        • October 14, 2016 at 7:27 pm
        jennunicorn
        Participant

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

        • October 14, 2016 at 7:27 pm
        jennunicorn
        Participant

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

      • October 14, 2016 at 5:43 pm
      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

       

       

      • October 14, 2016 at 5:51 pm
      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

       

       

      • October 14, 2016 at 5:51 pm
      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

       

       

      • October 14, 2016 at 5:51 pm
      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

       

       

      • October 14, 2016 at 8:14 pm
      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

      • October 14, 2016 at 8:14 pm
      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

      • October 14, 2016 at 8:14 pm
      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

      • October 15, 2016 at 3:01 pm
      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

       

      • October 15, 2016 at 3:01 pm
      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

       

      • October 15, 2016 at 3:01 pm
      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

       

        • October 15, 2016 at 4:10 pm
        jennunicorn
        Participant

        Thank you Stacy, hope you're feeling better!

        • October 15, 2016 at 4:10 pm
        jennunicorn
        Participant

        Thank you Stacy, hope you're feeling better!

        • October 15, 2016 at 4:10 pm
        jennunicorn
        Participant

        Thank you Stacy, hope you're feeling better!

      • October 15, 2016 at 8:36 pm
      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

      • October 15, 2016 at 8:36 pm
      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

      • October 15, 2016 at 8:36 pm
      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

      • October 25, 2016 at 1:01 am
      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!
      • October 25, 2016 at 1:01 am
      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!
      • October 25, 2016 at 1:01 am
      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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