mom3girlsFL

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!

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!

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!

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?

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?

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?

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

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

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

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!

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!

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!