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mom3girlsFL

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      mom3girlsFL
      Participant

      Dearest Rob,  I have been reading aloud your journey to my husband and we have been so touched by you both.  The love that was shared between the two of you was so evident in your words. I pray that time will ease the emptiness and the belief Adrianna is in peace and not pain will comfort you.

      Much love,

      laurie

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      mom3girlsFL
      Participant

      Hi Guys, 

      Thanks so much for your replies! Don't let this sound wrong, but its helpful to hear the been there/done that! In a strange way it keeps me plugging along. 

      I'm continuing with the twice daily low fever chills (this is 4 or 5 in a row now) but the nurse said to continue doing what I'm doing.

      Thanks again so much!

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      mom3girlsFL
      Participant

      Hi Guys, 

      Thanks so much for your replies! Don't let this sound wrong, but its helpful to hear the been there/done that! In a strange way it keeps me plugging along. 

      I'm continuing with the twice daily low fever chills (this is 4 or 5 in a row now) but the nurse said to continue doing what I'm doing.

      Thanks again so much!

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      mom3girlsFL
      Participant

      Hi Guys, 

      Thanks so much for your replies! Don't let this sound wrong, but its helpful to hear the been there/done that! In a strange way it keeps me plugging along. 

      I'm continuing with the twice daily low fever chills (this is 4 or 5 in a row now) but the nurse said to continue doing what I'm doing.

      Thanks again so much!

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      mom3girlsFL
      Participant

      Thank you all for your responses. If i am not mistaken, PD1 is immunotherapy?  If so, my oncologist is hesitant t put me on ANY immunotherapies as i have an auto-immune disease (Sjogren's Syndrome) and would not do well – I did horribly on interferon. A last resort I'm thnking.

      I also believe he is hoping for tumor shrinkage as well, followed by surgery, as an option.

      As for Moffit, i was there years ago (last battle) and saw Dr Weber. Due to my compromised immune system he did not even want me on interferon, just surgery and"watch and wait". I was not comfortable with that approach. I am very happy with the care i am receiving now, and my oncologist's group is now part of florida hospitals cancer center so i feel i am in good hands

      I will know more after brain mri and will post results.

      I know taf/mek is a temporary fix, but i have read about complete responders. Am i in complete denial?

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      mom3girlsFL
      Participant

      Thank you all for your responses. If i am not mistaken, PD1 is immunotherapy?  If so, my oncologist is hesitant t put me on ANY immunotherapies as i have an auto-immune disease (Sjogren's Syndrome) and would not do well – I did horribly on interferon. A last resort I'm thnking.

      I also believe he is hoping for tumor shrinkage as well, followed by surgery, as an option.

      As for Moffit, i was there years ago (last battle) and saw Dr Weber. Due to my compromised immune system he did not even want me on interferon, just surgery and"watch and wait". I was not comfortable with that approach. I am very happy with the care i am receiving now, and my oncologist's group is now part of florida hospitals cancer center so i feel i am in good hands

      I will know more after brain mri and will post results.

      I know taf/mek is a temporary fix, but i have read about complete responders. Am i in complete denial?

      Loading spinner
      mom3girlsFL
      Participant

      Thank you all for your responses. If i am not mistaken, PD1 is immunotherapy?  If so, my oncologist is hesitant t put me on ANY immunotherapies as i have an auto-immune disease (Sjogren's Syndrome) and would not do well – I did horribly on interferon. A last resort I'm thnking.

      I also believe he is hoping for tumor shrinkage as well, followed by surgery, as an option.

      As for Moffit, i was there years ago (last battle) and saw Dr Weber. Due to my compromised immune system he did not even want me on interferon, just surgery and"watch and wait". I was not comfortable with that approach. I am very happy with the care i am receiving now, and my oncologist's group is now part of florida hospitals cancer center so i feel i am in good hands

      I will know more after brain mri and will post results.

      I know taf/mek is a temporary fix, but i have read about complete responders. Am i in complete denial?

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      mom3girlsFL
      Participant

      HHHEEEEYYYY Kevin!

      So glad to see you post, been thinking about you….I am so sorry things have been tough but please know there are LOTS of us pulling for you!  You have a fantastic attitude and awesome outlook on things and you WILL get through this!  Sending best of luck and well wishes for a fabulous PET!  Let us know how it goes.

      :)Laurie

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      mom3girlsFL
      Participant

      HHHEEEEYYYY Kevin!

      So glad to see you post, been thinking about you….I am so sorry things have been tough but please know there are LOTS of us pulling for you!  You have a fantastic attitude and awesome outlook on things and you WILL get through this!  Sending best of luck and well wishes for a fabulous PET!  Let us know how it goes.

      :)Laurie

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      mom3girlsFL
      Participant

      Ha Celeste!  I am laughing so hard right now!  I told my hubby I would post anonymously as he found the article and thought I should share.  My first words to him were – I'm posting BUT I can't wait to hear what "Bubbles" or Janner will have to say about the reality of it.  Hands down you have posted so much info that I personally have read and/or taken to my appointments!  Thanks for all your hard work, postings, and blog!

      I agree ANY step forward is progress of some sort but this beast is tricky!  No offense taken, honestly!

      Remaining pessimistically optimistic since 2002,

      Laurie

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      mom3girlsFL
      Participant

      Ha Celeste!  I am laughing so hard right now!  I told my hubby I would post anonymously as he found the article and thought I should share.  My first words to him were – I'm posting BUT I can't wait to hear what "Bubbles" or Janner will have to say about the reality of it.  Hands down you have posted so much info that I personally have read and/or taken to my appointments!  Thanks for all your hard work, postings, and blog!

      I agree ANY step forward is progress of some sort but this beast is tricky!  No offense taken, honestly!

      Remaining pessimistically optimistic since 2002,

      Laurie

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      mom3girlsFL
      Participant

      Ha Celeste!  I am laughing so hard right now!  I told my hubby I would post anonymously as he found the article and thought I should share.  My first words to him were – I'm posting BUT I can't wait to hear what "Bubbles" or Janner will have to say about the reality of it.  Hands down you have posted so much info that I personally have read and/or taken to my appointments!  Thanks for all your hard work, postings, and blog!

      I agree ANY step forward is progress of some sort but this beast is tricky!  No offense taken, honestly!

      Remaining pessimistically optimistic since 2002,

      Laurie

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      mom3girlsFL
      Participant

      Thanks so much for your positive response! So glad to hear the combo working well for you!

      I just needed a little time to wrap my brain around this recurrence – I read my last post and i sure was having a pity party! Amazing how fear can take over! 

      Feel good so far except for being very tired but that could be my auto immune kicking in. I doubt i would be experiencing side effects after 3 doses?

      Anyway, thanks again!

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      mom3girlsFL
      Participant

      Thanks so much for your positive response! So glad to hear the combo working well for you!

      I just needed a little time to wrap my brain around this recurrence – I read my last post and i sure was having a pity party! Amazing how fear can take over! 

      Feel good so far except for being very tired but that could be my auto immune kicking in. I doubt i would be experiencing side effects after 3 doses?

      Anyway, thanks again!

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      mom3girlsFL
      Participant

      Thanks so much for your positive response! So glad to hear the combo working well for you!

      I just needed a little time to wrap my brain around this recurrence – I read my last post and i sure was having a pity party! Amazing how fear can take over! 

      Feel good so far except for being very tired but that could be my auto immune kicking in. I doubt i would be experiencing side effects after 3 doses?

      Anyway, thanks again!

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