Worse than I thought
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Worse than I thought

› Forums › General Melanoma Community › Worse than I thought

  • Post
    • July 22, 2013 at 5:08 pm
    NYKaren
    Participant
    I’ve tried posting for about 4 days now…
    It seems that when I very quickly saw my onc. after MRI & before gamma knife, I never got my MRI, CT scan results.
    So, not only did I have the 11 gamma knifed brain mets, I have 3 lymph node mets in right side, stages 1, 2 & 3) and one in left side, stage 5.
    Also 2 tiny spots in lung and 2 shadows in liver.
    My onc is on vacation, returning a week from today. I got this info from Merck trial nurse.
    First I asked her “barring non-stable brain and providing bloods are ok, will I be set for PD1 trial? She hemmed & hawed; so then I said “so what about lymph node surgery?” She said “oh no, that’s how we’ll measure the PD1”. Go figure that one out.
    Next MRI is 7/22, the onc appointment that afternoon.
    I’ve been after the holy grail of PD1 for 2 years now, and it might not even work! The possibility of 12 weeks on chemo is horrific.
    I’ll let you know how it goes.
    Karen
Viewing 33 reply threads
  • Replies
      • July 22, 2013 at 5:52 pm
      jag
      Participant

      Well, what a coinky dink Karen, I will be going in for an MRI today as well.  Have been having the same signs of my last 2 surgeries which hopefully is just a touch of radiation necrosis-unfortunately the only way to find out would be to have surgery done.  I tried to sneak into urgent care last night to get a pronto MRI but got foiled and was only CTd instead-place was a ghost town.  Anyway, I thought Ippi was the holy grain for peoplel w/brain metastases and never got it.  I'm still here.  What kind of chemo are they talking about?  If it is Temodar, it aint so bad-just nausea when you first start out which can be covered with anti-emetic drugs-then it is a once daily pill.  Again, as always, my advice is to minimize your tumor burden as much as possible, and fight with immunotherapy drugs.  

      I wish you luck with your MRI.  Mine will be at 4:45 at 53rd street.  Let me know if you want to meet up.  The wifey is currently exhausted as we got home at 3am last night and Jedd had her up at 6:30 am-she is telling me to rest and out on calls to our patients!  I don't like to let her run herself into the ground, but I still would be happy to say hello.  

      John

      • July 22, 2013 at 5:52 pm
      jag
      Participant

      Well, what a coinky dink Karen, I will be going in for an MRI today as well.  Have been having the same signs of my last 2 surgeries which hopefully is just a touch of radiation necrosis-unfortunately the only way to find out would be to have surgery done.  I tried to sneak into urgent care last night to get a pronto MRI but got foiled and was only CTd instead-place was a ghost town.  Anyway, I thought Ippi was the holy grain for peoplel w/brain metastases and never got it.  I'm still here.  What kind of chemo are they talking about?  If it is Temodar, it aint so bad-just nausea when you first start out which can be covered with anti-emetic drugs-then it is a once daily pill.  Again, as always, my advice is to minimize your tumor burden as much as possible, and fight with immunotherapy drugs.  

      I wish you luck with your MRI.  Mine will be at 4:45 at 53rd street.  Let me know if you want to meet up.  The wifey is currently exhausted as we got home at 3am last night and Jedd had her up at 6:30 am-she is telling me to rest and out on calls to our patients!  I don't like to let her run herself into the ground, but I still would be happy to say hello.  

      John

      • July 22, 2013 at 5:52 pm
      jag
      Participant

      Well, what a coinky dink Karen, I will be going in for an MRI today as well.  Have been having the same signs of my last 2 surgeries which hopefully is just a touch of radiation necrosis-unfortunately the only way to find out would be to have surgery done.  I tried to sneak into urgent care last night to get a pronto MRI but got foiled and was only CTd instead-place was a ghost town.  Anyway, I thought Ippi was the holy grain for peoplel w/brain metastases and never got it.  I'm still here.  What kind of chemo are they talking about?  If it is Temodar, it aint so bad-just nausea when you first start out which can be covered with anti-emetic drugs-then it is a once daily pill.  Again, as always, my advice is to minimize your tumor burden as much as possible, and fight with immunotherapy drugs.  

      I wish you luck with your MRI.  Mine will be at 4:45 at 53rd street.  Let me know if you want to meet up.  The wifey is currently exhausted as we got home at 3am last night and Jedd had her up at 6:30 am-she is telling me to rest and out on calls to our patients!  I don't like to let her run herself into the ground, but I still would be happy to say hello.  

      John

      • July 22, 2013 at 5:54 pm
      jag
      Participant

      Oh and I forgot to mention the other rotten side effect of Temodar-constipation.

      • July 22, 2013 at 7:23 pm
      awillett1991
      Participant
      Karen,

      I know you are disappointed but you’ve already come thru gamma for 11, I said ELEVEN brain mets. NO ONE knows what tomorrow holds, or who which drug will work for. All of this you know.

      You have measurable disease needed for the trial it sounds like, and you are going for what you believe is the best option. Sure I believe in a little self- pity time but pick yourself up, dust yourself off, and keep fighting! You got this!

      Amy

      • July 22, 2013 at 7:23 pm
      awillett1991
      Participant
      Karen,

      I know you are disappointed but you’ve already come thru gamma for 11, I said ELEVEN brain mets. NO ONE knows what tomorrow holds, or who which drug will work for. All of this you know.

      You have measurable disease needed for the trial it sounds like, and you are going for what you believe is the best option. Sure I believe in a little self- pity time but pick yourself up, dust yourself off, and keep fighting! You got this!

      Amy

      • July 22, 2013 at 7:23 pm
      awillett1991
      Participant
      Karen,

      I know you are disappointed but you’ve already come thru gamma for 11, I said ELEVEN brain mets. NO ONE knows what tomorrow holds, or who which drug will work for. All of this you know.

      You have measurable disease needed for the trial it sounds like, and you are going for what you believe is the best option. Sure I believe in a little self- pity time but pick yourself up, dust yourself off, and keep fighting! You got this!

      Amy

      • July 22, 2013 at 7:41 pm
      NYKaren
      Participant
      Will probably be DTIC, already had. DTIC.
      John, I have staff conference or I would have been there in a flash!
      • July 22, 2013 at 8:01 pm
      NYKaren
      Participant
      Sorry, meant I already had Temodar!
      Amy, pity party’s finished, I’m still incredulous, though!
      Karen
      • July 22, 2013 at 8:10 pm
      awillett1991
      Participant
      I know girl, it is a hard road. Stay tough!
      • July 22, 2013 at 9:40 pm
      aldakota22
      Participant

      Sorry to see you are having a tough time.Never easy for you.Will be keeping you in my prayers that things only get better.Looking for good news in future posts.  Al

      • July 22, 2013 at 9:40 pm
      aldakota22
      Participant

      Sorry to see you are having a tough time.Never easy for you.Will be keeping you in my prayers that things only get better.Looking for good news in future posts.  Al

      • July 22, 2013 at 9:40 pm
      aldakota22
      Participant

      Sorry to see you are having a tough time.Never easy for you.Will be keeping you in my prayers that things only get better.Looking for good news in future posts.  Al

      • July 22, 2013 at 9:43 pm
      JerryfromFauq
      Participant

      Nothing wrong with a little self pity.  just don't stay THERE!  Pulling for you Gal.

      • July 22, 2013 at 9:43 pm
      JerryfromFauq
      Participant

      Nothing wrong with a little self pity.  just don't stay THERE!  Pulling for you Gal.

      • July 22, 2013 at 9:43 pm
      JerryfromFauq
      Participant

      Nothing wrong with a little self pity.  just don't stay THERE!  Pulling for you Gal.

      • July 23, 2013 at 12:23 am
      killmel
      Participant

      Hi Karen,

       

      I  am new here and trying to still learn how to post.

      My dear,I have read your posts and you have been through a great deal. I gathered from reading your posts that your melanoma was just on your scalp, face & ear.

      Is this the first time that you scans have shown that you have melanoma mets in other parts of your body?? If so,my word, what a Shock for you.

      Also, I reading your profile that you lost about 1/3 of my hair from radiation, did it ever grow back?

      Best of luck and I hope you get PD1 and not chemo. 12 weeks is a long time to wait to cross over to get PD1.

      Anna

      • July 23, 2013 at 12:23 am
      killmel
      Participant

      Hi Karen,

       

      I  am new here and trying to still learn how to post.

      My dear,I have read your posts and you have been through a great deal. I gathered from reading your posts that your melanoma was just on your scalp, face & ear.

      Is this the first time that you scans have shown that you have melanoma mets in other parts of your body?? If so,my word, what a Shock for you.

      Also, I reading your profile that you lost about 1/3 of my hair from radiation, did it ever grow back?

      Best of luck and I hope you get PD1 and not chemo. 12 weeks is a long time to wait to cross over to get PD1.

      Anna

      • July 23, 2013 at 12:23 am
      killmel
      Participant

      Hi Karen,

       

      I  am new here and trying to still learn how to post.

      My dear,I have read your posts and you have been through a great deal. I gathered from reading your posts that your melanoma was just on your scalp, face & ear.

      Is this the first time that you scans have shown that you have melanoma mets in other parts of your body?? If so,my word, what a Shock for you.

      Also, I reading your profile that you lost about 1/3 of my hair from radiation, did it ever grow back?

      Best of luck and I hope you get PD1 and not chemo. 12 weeks is a long time to wait to cross over to get PD1.

      Anna

      • July 23, 2013 at 1:33 am
      LynnLuc
      Participant

      Hope you can do anti pd 1 and not chemo. I did it for 30 month trial. I am Stage 4. I have been NED for 3 years 4 months. By the way  it was probably a typo, but there is no stage 5.-:) Lynn

      • July 23, 2013 at 1:33 am
      LynnLuc
      Participant

      Hope you can do anti pd 1 and not chemo. I did it for 30 month trial. I am Stage 4. I have been NED for 3 years 4 months. By the way  it was probably a typo, but there is no stage 5.-:) Lynn

      • July 23, 2013 at 1:33 am
      LynnLuc
      Participant

      Hope you can do anti pd 1 and not chemo. I did it for 30 month trial. I am Stage 4. I have been NED for 3 years 4 months. By the way  it was probably a typo, but there is no stage 5.-:) Lynn

      • July 23, 2013 at 2:18 am
      DeniseK
      Participant

      Hi Karen,

      One thing about melanoma it always will keep you guessing.  I went in for SRS on 1 brain met and ended up with 7.  It's no fun!  What about Ipi?  Have you done Ipi?  I can't remember I will have to look at your profile again.  I will be getting my second dose Thursday.  I'm itching like crazy which is a sign it's working I've heard and my sub q on my arm is shrinking.  My goal is to get into Anti PD 1 as well, but I may be a complete responder to Ipi. 

      All my best to you,

      Denise

      • July 23, 2013 at 2:18 am
      DeniseK
      Participant

      Hi Karen,

      One thing about melanoma it always will keep you guessing.  I went in for SRS on 1 brain met and ended up with 7.  It's no fun!  What about Ipi?  Have you done Ipi?  I can't remember I will have to look at your profile again.  I will be getting my second dose Thursday.  I'm itching like crazy which is a sign it's working I've heard and my sub q on my arm is shrinking.  My goal is to get into Anti PD 1 as well, but I may be a complete responder to Ipi. 

      All my best to you,

      Denise

      • July 23, 2013 at 2:18 am
      DeniseK
      Participant

      Hi Karen,

      One thing about melanoma it always will keep you guessing.  I went in for SRS on 1 brain met and ended up with 7.  It's no fun!  What about Ipi?  Have you done Ipi?  I can't remember I will have to look at your profile again.  I will be getting my second dose Thursday.  I'm itching like crazy which is a sign it's working I've heard and my sub q on my arm is shrinking.  My goal is to get into Anti PD 1 as well, but I may be a complete responder to Ipi. 

      All my best to you,

      Denise

      • July 23, 2013 at 7:47 am
      NYKaren
      Participant
      Lynn, not regular staging, some other kind of lymph node # that I never might never heard ever before.
      • July 23, 2013 at 8:37 am
      NYKaren
      Participant
      Hi? Info Ipitwice

      List my words today. Had conference & was about to sip wine at dinner but couldn’t talk but nonsenbendr. Went to. NYU urgenbrtberenge care. Had CT. only speech path of brain was swollen. Still on Decadron. Will nome know tomorrow
      K

      • July 23, 2013 at 2:21 pm
      King
      Participant

      Thinking of you, as always.  Maybe it's time to take a little break from work, if possible.  Rest can play a part in fighting the beast.  How scary…losing your words.  Hopefully, the Decadron will kick in for the swelling.

       

      You are a tough warrior.

       

      Stay Strong

      King

      Stage IV  7/05  Liver mets

      • July 23, 2013 at 10:51 pm
      deardad
      Participant

      Hi Karen,

      Had a similiar experience with my father, funny how you don't find these things out until you try to enter a trial! Hang in there, PD 1 may still come through. Stay positive and rest up a bit.

      Take care

      Nahmi from Melbourne

      • July 24, 2013 at 8:53 am
      Owl
      Participant

      Karen, my thaughts are with you. Keep fighting! Jenny

      • July 24, 2013 at 8:53 am
      Owl
      Participant

      Karen, my thaughts are with you. Keep fighting! Jenny

      • July 24, 2013 at 8:53 am
      Owl
      Participant

      Karen, my thaughts are with you. Keep fighting! Jenny

      • July 24, 2013 at 11:48 am
      NYKaren
      Participant
      Kathie, thanks for figuring out what I was trying to say!
      Very scary, but thankfully, just some swelling.
      Dr. Pavlick (who’s on vacation) says that as long as my weaning goes ok, he should be able to read it. The all powerful MRI will tell. Fingers crossed!
      I M blessed to have amazing docs… wolchok/Halpern, Sloan; Sznol et al, Yale New Haven and now Anna Pavlovk, clinical trial rockstar!

      Thanks everyone — talk (being the operative word) to you soon. Oh yes, for anything like this, my iPhone was a huge help–I didn’t know what to do with it yesterday!
      Karen

      • July 24, 2013 at 11:54 am
      NYKaren
      Participant
      Sorry, the all powerful Dr. Douglas Kondzhioka (sp) Neurrosurgon, super Gamma-Knifferer, was the he, not Dr. Pavlick, who is a she!
      • July 22, 2013 at 5:54 pm
      jag
      Participant

      Oh and I forgot to mention the other rotten side effect of Temodar-constipation.

      • July 22, 2013 at 5:54 pm
      jag
      Participant

      Oh and I forgot to mention the other rotten side effect of Temodar-constipation.

      • July 22, 2013 at 7:41 pm
      NYKaren
      Participant
      Will probably be DTIC, already had. DTIC.
      John, I have staff conference or I would have been there in a flash!
      • July 22, 2013 at 7:41 pm
      NYKaren
      Participant
      Will probably be DTIC, already had. DTIC.
      John, I have staff conference or I would have been there in a flash!
      • July 22, 2013 at 8:01 pm
      NYKaren
      Participant
      Sorry, meant I already had Temodar!
      Amy, pity party’s finished, I’m still incredulous, though!
      Karen
      • July 22, 2013 at 8:01 pm
      NYKaren
      Participant
      Sorry, meant I already had Temodar!
      Amy, pity party’s finished, I’m still incredulous, though!
      Karen
      • July 22, 2013 at 8:10 pm
      awillett1991
      Participant
      I know girl, it is a hard road. Stay tough!
      • July 22, 2013 at 8:10 pm
      awillett1991
      Participant
      I know girl, it is a hard road. Stay tough!
      • July 23, 2013 at 7:47 am
      NYKaren
      Participant
      Lynn, not regular staging, some other kind of lymph node # that I never might never heard ever before.
      • July 23, 2013 at 7:47 am
      NYKaren
      Participant
      Lynn, not regular staging, some other kind of lymph node # that I never might never heard ever before.
      • July 23, 2013 at 8:37 am
      NYKaren
      Participant
      Hi? Info Ipitwice

      List my words today. Had conference & was about to sip wine at dinner but couldn’t talk but nonsenbendr. Went to. NYU urgenbrtberenge care. Had CT. only speech path of brain was swollen. Still on Decadron. Will nome know tomorrow
      K

      • July 23, 2013 at 8:37 am
      NYKaren
      Participant
      Hi? Info Ipitwice

      List my words today. Had conference & was about to sip wine at dinner but couldn’t talk but nonsenbendr. Went to. NYU urgenbrtberenge care. Had CT. only speech path of brain was swollen. Still on Decadron. Will nome know tomorrow
      K

      • July 23, 2013 at 2:21 pm
      King
      Participant

      Thinking of you, as always.  Maybe it's time to take a little break from work, if possible.  Rest can play a part in fighting the beast.  How scary…losing your words.  Hopefully, the Decadron will kick in for the swelling.

       

      You are a tough warrior.

       

      Stay Strong

      King

      Stage IV  7/05  Liver mets

      • July 23, 2013 at 2:21 pm
      King
      Participant

      Thinking of you, as always.  Maybe it's time to take a little break from work, if possible.  Rest can play a part in fighting the beast.  How scary…losing your words.  Hopefully, the Decadron will kick in for the swelling.

       

      You are a tough warrior.

       

      Stay Strong

      King

      Stage IV  7/05  Liver mets

      • July 23, 2013 at 10:51 pm
      deardad
      Participant

      Hi Karen,

      Had a similiar experience with my father, funny how you don't find these things out until you try to enter a trial! Hang in there, PD 1 may still come through. Stay positive and rest up a bit.

      Take care

      Nahmi from Melbourne

      • July 23, 2013 at 10:51 pm
      deardad
      Participant

      Hi Karen,

      Had a similiar experience with my father, funny how you don't find these things out until you try to enter a trial! Hang in there, PD 1 may still come through. Stay positive and rest up a bit.

      Take care

      Nahmi from Melbourne

      • July 24, 2013 at 11:48 am
      NYKaren
      Participant
      Kathie, thanks for figuring out what I was trying to say!
      Very scary, but thankfully, just some swelling.
      Dr. Pavlick (who’s on vacation) says that as long as my weaning goes ok, he should be able to read it. The all powerful MRI will tell. Fingers crossed!
      I M blessed to have amazing docs… wolchok/Halpern, Sloan; Sznol et al, Yale New Haven and now Anna Pavlovk, clinical trial rockstar!

      Thanks everyone — talk (being the operative word) to you soon. Oh yes, for anything like this, my iPhone was a huge help–I didn’t know what to do with it yesterday!
      Karen

      • July 24, 2013 at 11:48 am
      NYKaren
      Participant
      Kathie, thanks for figuring out what I was trying to say!
      Very scary, but thankfully, just some swelling.
      Dr. Pavlick (who’s on vacation) says that as long as my weaning goes ok, he should be able to read it. The all powerful MRI will tell. Fingers crossed!
      I M blessed to have amazing docs… wolchok/Halpern, Sloan; Sznol et al, Yale New Haven and now Anna Pavlovk, clinical trial rockstar!

      Thanks everyone — talk (being the operative word) to you soon. Oh yes, for anything like this, my iPhone was a huge help–I didn’t know what to do with it yesterday!
      Karen

      • July 24, 2013 at 11:54 am
      NYKaren
      Participant
      Sorry, the all powerful Dr. Douglas Kondzhioka (sp) Neurrosurgon, super Gamma-Knifferer, was the he, not Dr. Pavlick, who is a she!
      • July 24, 2013 at 11:54 am
      NYKaren
      Participant
      Sorry, the all powerful Dr. Douglas Kondzhioka (sp) Neurrosurgon, super Gamma-Knifferer, was the he, not Dr. Pavlick, who is a she!
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