Good news I think

This topic has 42 replies, 7 voices, and was last updated 10 years ago by _Paul_.

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- February 14, 2016 at 1:17 am
- Quote
_Paul_
Participant
After two failed attempts I was finally able to complete a PET (ipi made me a type 1 diabetic and it’s hard to meet the SCCA's PET requirement of glucose < 150 with no meds or insulin the day of).

I am not due to meet with my excellent oncologist, Dr. John Thompson, until Wednesday. But I emailed him yesterday if he would share the radiology report with me in advance (he knows me well enough that I won't freak out) which he did. So when I got the results in an email at work, I took a deep breath, read it, and was pleasantly surprised by what appears to be good news.

In the "Impression" section at the end it states "No PET evidence to suggest macroscopic metastatic melanoma". Even though the PET/CT did image a bunch of nodules that were previously identified as "highly concerning" for MM, this time none of them demonstrated abnormal FDG uptake.

I am no doctor, but I wonder if this result, coupled with the fact that I have no known cutaneous (or sub-q) tumors, might actually mean I am NED? Or would I have to have all the non-FDG nodules disappear to qualify for that elusive outcome?

I guess its obvious by the fact that I posted this that I am eager to hear what he has to say, and I know I should just wait, but you guys are such a source of excellent information. Even though I have only met a couple of you, you all feel like my peeps!

– Paul

Viewing 17 reply threads

Replies

- - February 14, 2016 at 1:53 am
  - Quote
  AshleyS
  Participant
  Hi Paul. Congrats on what sounds like great results. I received NED status in November and things still looked good in January. My report does say I have groundglass nodules in my lungs. Early on I did not have those. I've now had a cough for the past seven weeks. The nodules could be pneumonitis in my lungs showing up on my scans. Anyway, even though something is showing up In my lungs, my doctor is confident enough to label me NED. (But I've always been shooting for stable, so I take that too.)
  
  Best of luck with your oncologist!
  
  Ashley
- - February 14, 2016 at 1:53 am
  - Quote
  AshleyS
  Participant
  Hi Paul. Congrats on what sounds like great results. I received NED status in November and things still looked good in January. My report does say I have groundglass nodules in my lungs. Early on I did not have those. I've now had a cough for the past seven weeks. The nodules could be pneumonitis in my lungs showing up on my scans. Anyway, even though something is showing up In my lungs, my doctor is confident enough to label me NED. (But I've always been shooting for stable, so I take that too.)
  
  Best of luck with your oncologist!
  
  Ashley
  - February 14, 2016 at 6:44 pm
    
    Quote
    _Paul_
    Participant
    
    I had those ground glass nodules at one point too and they just magically resolved. I asked about them on this board and Artie (miss him) and Celeste basically said they are inflammations that that indicated pneumonitis like you said. So they did not seem like anything I had to worry about and were called out separately from the other lung nodules.
    
    I hope you remain at NED, period!
  - February 14, 2016 at 6:44 pm
    
    Quote
    _Paul_
    Participant
    
    I had those ground glass nodules at one point too and they just magically resolved. I asked about them on this board and Artie (miss him) and Celeste basically said they are inflammations that that indicated pneumonitis like you said. So they did not seem like anything I had to worry about and were called out separately from the other lung nodules.
    
    I hope you remain at NED, period!
  - February 14, 2016 at 6:44 pm
    
    Quote
    _Paul_
    Participant
    
    I had those ground glass nodules at one point too and they just magically resolved. I asked about them on this board and Artie (miss him) and Celeste basically said they are inflammations that that indicated pneumonitis like you said. So they did not seem like anything I had to worry about and were called out separately from the other lung nodules.
    
    I hope you remain at NED, period!
- - February 14, 2016 at 1:53 am
  - Quote
  AshleyS
  Participant
  Hi Paul. Congrats on what sounds like great results. I received NED status in November and things still looked good in January. My report does say I have groundglass nodules in my lungs. Early on I did not have those. I've now had a cough for the past seven weeks. The nodules could be pneumonitis in my lungs showing up on my scans. Anyway, even though something is showing up In my lungs, my doctor is confident enough to label me NED. (But I've always been shooting for stable, so I take that too.)
  
  Best of luck with your oncologist!
  
  Ashley
- - February 14, 2016 at 3:26 am
  - Quote
  Mat
  Participant
  Paul, sounds like great news! It may be NEAD, a term I learned on MIF. No evidence of active disease. In either case, I'm sure you'll take it.
- - February 14, 2016 at 3:26 am
  - Quote
  Mat
  Participant
  Paul, sounds like great news! It may be NEAD, a term I learned on MIF. No evidence of active disease. In either case, I'm sure you'll take it.
  - February 14, 2016 at 6:46 pm
    
    Quote
    _Paul_
    Participant
    
    Hi Mat, now that you mention it, I think I saw you using that in an earlier post. Yes, that's probably more accurate, plus it has a better ring to it ;-).
    
    And you are correct, I will most certainly take it!
    
    – Paul
  - February 14, 2016 at 6:46 pm
    
    Quote
    _Paul_
    Participant
    
    Hi Mat, now that you mention it, I think I saw you using that in an earlier post. Yes, that's probably more accurate, plus it has a better ring to it ;-).
    
    And you are correct, I will most certainly take it!
    
    – Paul
  - February 14, 2016 at 6:46 pm
    
    Quote
    _Paul_
    Participant
    
    Hi Mat, now that you mention it, I think I saw you using that in an earlier post. Yes, that's probably more accurate, plus it has a better ring to it ;-).
    
    And you are correct, I will most certainly take it!
    
    – Paul
- - February 14, 2016 at 3:26 am
  - Quote
  Mat
  Participant
  Paul, sounds like great news! It may be NEAD, a term I learned on MIF. No evidence of active disease. In either case, I'm sure you'll take it.
- - February 14, 2016 at 1:27 pm
  - Quote
  Bubbles
  Participant
  Oh, Paul! That certainly sounds like good news to me! Good luck with your appointment Wednesday! C
- - February 14, 2016 at 1:27 pm
  - Quote
  Bubbles
  Participant
  Oh, Paul! That certainly sounds like good news to me! Good luck with your appointment Wednesday! C
  - February 14, 2016 at 6:49 pm
    
    Quote
    _Paul_
    Participant
    
    Thanks Celeste! It sure is nice to be able to look forward to meeting my onc.
    
    – Paul
  - February 14, 2016 at 6:49 pm
    
    Quote
    _Paul_
    Participant
    
    Thanks Celeste! It sure is nice to be able to look forward to meeting my onc.
    
    – Paul
  - February 14, 2016 at 6:49 pm
    
    Quote
    _Paul_
    Participant
    
    Thanks Celeste! It sure is nice to be able to look forward to meeting my onc.
    
    – Paul
- - February 14, 2016 at 1:27 pm
  - Quote
  Bubbles
  Participant
  Oh, Paul! That certainly sounds like good news to me! Good luck with your appointment Wednesday! C
- - February 14, 2016 at 1:51 pm
  - Quote
  jenny22
  Participant
  Paul- It certainly sounds like goods news…..and nice you that you have that relationship with your ONC.
  
  Will be looking for your "offical" update after your appt this week.
  
  Keeping my fingers crossed for more good news!
  
  Best,
  
  jenny
- - February 14, 2016 at 1:51 pm
  - Quote
  jenny22
  Participant
  Paul- It certainly sounds like goods news…..and nice you that you have that relationship with your ONC.
  
  Will be looking for your "offical" update after your appt this week.
  
  Keeping my fingers crossed for more good news!
  
  Best,
  
  jenny
  - February 14, 2016 at 6:52 pm
    
    Quote
    _Paul_
    Participant
    
    Thanks Jenny. I really like my onc. He doesn't BS me and knows me well enough to just lay it all on the line. I know that some oncs will only divulge scan results in person, but my take is that he is pretty compassionate about patient feelings.
    
    – Paul
  - February 14, 2016 at 6:52 pm
    
    Quote
    _Paul_
    Participant
    
    Thanks Jenny. I really like my onc. He doesn't BS me and knows me well enough to just lay it all on the line. I know that some oncs will only divulge scan results in person, but my take is that he is pretty compassionate about patient feelings.
    
    – Paul
  - February 14, 2016 at 6:52 pm
    
    Quote
    _Paul_
    Participant
    
    Thanks Jenny. I really like my onc. He doesn't BS me and knows me well enough to just lay it all on the line. I know that some oncs will only divulge scan results in person, but my take is that he is pretty compassionate about patient feelings.
    
    – Paul
- - February 14, 2016 at 1:51 pm
  - Quote
  jenny22
  Participant
  Paul- It certainly sounds like goods news…..and nice you that you have that relationship with your ONC.
  
  Will be looking for your "offical" update after your appt this week.
  
  Keeping my fingers crossed for more good news!
  
  Best,
  
  jenny
- - February 14, 2016 at 8:02 pm
  - Quote
  DZnDef
  Participant
  Congratulations, Paul! Those do appear to be good results. Looking forward to reading what your doctor says on Wed. At a minimum, those results certainly don't indicate that you've gotten worse (and that's always a good thing).
- - February 14, 2016 at 8:02 pm
  - Quote
  DZnDef
  Participant
  Congratulations, Paul! Those do appear to be good results. Looking forward to reading what your doctor says on Wed. At a minimum, those results certainly don't indicate that you've gotten worse (and that's always a good thing).
  - February 17, 2016 at 5:17 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Maggie. I don't want to be greedy because I will definately be happy with stable, or NEAD, but of course, I would not say no to NED!
    
    – Paul
  - February 17, 2016 at 5:17 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Maggie. I don't want to be greedy because I will definately be happy with stable, or NEAD, but of course, I would not say no to NED!
    
    – Paul
  - February 17, 2016 at 5:17 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Maggie. I don't want to be greedy because I will definately be happy with stable, or NEAD, but of course, I would not say no to NED!
    
    – Paul
- - February 14, 2016 at 8:02 pm
  - Quote
  DZnDef
  Participant
  Congratulations, Paul! Those do appear to be good results. Looking forward to reading what your doctor says on Wed. At a minimum, those results certainly don't indicate that you've gotten worse (and that's always a good thing).
- - February 15, 2016 at 4:25 am
  - Quote
  adriana cooper
  Participant
  Good news Paul, Met you last year at symposium. Adriana is thinking about switching to Dr. Thompson due to lack of communication (follow-u on calls ect. miss Dr. Margolin) from current Dr. Just had Keytruda #5 and scans scheduled for 2 weeks. Brain met from October seems to be responding to the Gamma Knife. Were your scans on Fri? We always get a copy of the scans same day on a disk and then have an appointment the next day for results/radiology report. Waiting sucks. Has this not been the norm for you? Good luck.
  
  Rob and Adriana
  - February 16, 2016 at 2:49 pm
    
    Quote
    _Paul_
    Participant
    
    Hi Rob,
    
    I hear you about Dr. Margolin, but I feel fortunate to now have Dr. Thompson. Hopefully Adriana will experience the abscopal effect from the combination of radiation and pembro!
    
    My scans were actually on Thursday, and I received the radiologist's report the next day. This time around was unusual in that it took three attempts before the SCCA would scan me. So I told Dr. Thompson we could just discuss the results on the phone, but since I had an appointment scheduled a little less than a week following the scan we decided just to wait. Normally I have an appointment the next day to discuss the findings.
    
    Have you heard anything about a symposium this year? So far I have not heard a peep.
    
    – Paul
  - February 16, 2016 at 2:49 pm
    
    Quote
    _Paul_
    Participant
    
    Hi Rob,
    
    I hear you about Dr. Margolin, but I feel fortunate to now have Dr. Thompson. Hopefully Adriana will experience the abscopal effect from the combination of radiation and pembro!
    
    My scans were actually on Thursday, and I received the radiologist's report the next day. This time around was unusual in that it took three attempts before the SCCA would scan me. So I told Dr. Thompson we could just discuss the results on the phone, but since I had an appointment scheduled a little less than a week following the scan we decided just to wait. Normally I have an appointment the next day to discuss the findings.
    
    Have you heard anything about a symposium this year? So far I have not heard a peep.
    
    – Paul
  - February 17, 2016 at 11:18 pm
    
    Quote
    adriana cooper
    Participant
    
    Checked calender Looks Like May 14.
    
    http://www.melanoma.org/get-involved/calendar-of-events/2016-05
    
    See you then.
  - February 18, 2016 at 4:57 am
    
    Quote
    _Paul_
    Participant
    
    Thank you for posting that Adriana! I guess I didn't look forward enough. Something to look forward to!
    
    – Paul
  - February 18, 2016 at 4:57 am
    
    Quote
    _Paul_
    Participant
    
    Thank you for posting that Adriana! I guess I didn't look forward enough. Something to look forward to!
    
    – Paul
  - February 18, 2016 at 4:57 am
    
    Quote
    _Paul_
    Participant
    
    Thank you for posting that Adriana! I guess I didn't look forward enough. Something to look forward to!
    
    – Paul
  - February 17, 2016 at 11:18 pm
    
    Quote
    adriana cooper
    Participant
    
    Checked calender Looks Like May 14.
    
    http://www.melanoma.org/get-involved/calendar-of-events/2016-05
    
    See you then.
  - February 17, 2016 at 11:18 pm
    
    Quote
    adriana cooper
    Participant
    
    Checked calender Looks Like May 14.
    
    http://www.melanoma.org/get-involved/calendar-of-events/2016-05
    
    See you then.
  - February 16, 2016 at 2:49 pm
    
    Quote
    _Paul_
    Participant
    
    Hi Rob,
    
    I hear you about Dr. Margolin, but I feel fortunate to now have Dr. Thompson. Hopefully Adriana will experience the abscopal effect from the combination of radiation and pembro!
    
    My scans were actually on Thursday, and I received the radiologist's report the next day. This time around was unusual in that it took three attempts before the SCCA would scan me. So I told Dr. Thompson we could just discuss the results on the phone, but since I had an appointment scheduled a little less than a week following the scan we decided just to wait. Normally I have an appointment the next day to discuss the findings.
    
    Have you heard anything about a symposium this year? So far I have not heard a peep.
    
    – Paul
- - February 15, 2016 at 4:25 am
  - Quote
  adriana cooper
  Participant
  Good news Paul, Met you last year at symposium. Adriana is thinking about switching to Dr. Thompson due to lack of communication (follow-u on calls ect. miss Dr. Margolin) from current Dr. Just had Keytruda #5 and scans scheduled for 2 weeks. Brain met from October seems to be responding to the Gamma Knife. Were your scans on Fri? We always get a copy of the scans same day on a disk and then have an appointment the next day for results/radiology report. Waiting sucks. Has this not been the norm for you? Good luck.
  
  Rob and Adriana
- - February 15, 2016 at 4:25 am
  - Quote
  adriana cooper
  Participant
  Good news Paul, Met you last year at symposium. Adriana is thinking about switching to Dr. Thompson due to lack of communication (follow-u on calls ect. miss Dr. Margolin) from current Dr. Just had Keytruda #5 and scans scheduled for 2 weeks. Brain met from October seems to be responding to the Gamma Knife. Were your scans on Fri? We always get a copy of the scans same day on a disk and then have an appointment the next day for results/radiology report. Waiting sucks. Has this not been the norm for you? Good luck.
  
  Rob and Adriana