(Relatively) reassuring news

This topic has 36 replies, 7 voices, and was last updated 12 years, 10 months ago by lhaley.

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- July 17, 2011 at 3:13 pm
- Quote
Dynasysman
Participant
Got scan results back yesterday. As good as we could have hoped realistically. Stage 3. Brain MRI negative. The only tumor we found was the one that ultrasound-biopsy revealed in my left sternocleidomastoid muscle…and it was somewhat SMALLER (8mm in March, 5mm last week). I see the surgeon tomorrow, ONC on Tuesday, and expect we'll start therapy a week from tomorrow (or sometime that week).

Life in the "New Normal": isn't it amazing what we come to consider "good news"?

Got scan results back yesterday. As good as we could have hoped realistically. Stage 3. Brain MRI negative. The only tumor we found was the one that ultrasound-biopsy revealed in my left sternocleidomastoid muscle…and it was somewhat SMALLER (8mm in March, 5mm last week). I see the surgeon tomorrow, ONC on Tuesday, and expect we'll start therapy a week from tomorrow (or sometime that week).

Life in the "New Normal": isn't it amazing what we come to consider "good news"?

I hope each of us keeps getting the news we hope to hear…

Viewing 11 reply threads

Replies

- - July 17, 2011 at 3:18 pm
  - Quote
  ValinMtl
  Participant
  Good news brain MRI is negative and tumor is shrinking…as you say strange what is the 'new norm'…shrinking is really good…may it keep on doing so. Val
  - July 17, 2011 at 5:00 pm
    
    Quote
    Dynasysman
    Participant
    
    Thanks, Val. The only problem is that melanoma is so complex — almost like a terrorist. It can shrink, hide, and then blast out somewhere else…so you never know if you're safe.
    
    On the other hand, shrinking is better than growing, so I'll take it. I suspect we'll operate to take it out before I get to learn whether it will continue to shrink, though.
    
    Again, thanks for your good wishes. Onward!
  - July 17, 2011 at 5:00 pm
    
    Quote
    Dynasysman
    Participant
    
    Thanks, Val. The only problem is that melanoma is so complex — almost like a terrorist. It can shrink, hide, and then blast out somewhere else…so you never know if you're safe.
    
    On the other hand, shrinking is better than growing, so I'll take it. I suspect we'll operate to take it out before I get to learn whether it will continue to shrink, though.
    
    Again, thanks for your good wishes. Onward!
- - July 17, 2011 at 3:18 pm
  - Quote
  ValinMtl
  Participant
  Good news brain MRI is negative and tumor is shrinking…as you say strange what is the 'new norm'…shrinking is really good…may it keep on doing so. Val
- - July 17, 2011 at 3:32 pm
  - Quote
  Linny
  Participant
  Your comment on life in the "new normal" is spot-on.
  
  I hope that damn tumor shrinks even more and that you recover quickly from the surgery!
  
  Linda
  - July 17, 2011 at 5:33 pm
    
    Quote
    Dynasysman
    Participant
    
    Thanks, Linda. I realize we are both fairly recent Stage 3 MUPs. We all need to stick together :>)
    
    I suspect that we will take the tumor out before it gets to shrink much more. Right now, I mostly hope the damned cells never left the basin, but we'll see.
    
    Stay strong. And good luck with the MAGE trial.
  - July 17, 2011 at 5:33 pm
    
    Quote
    Dynasysman
    Participant
    
    Thanks, Linda. I realize we are both fairly recent Stage 3 MUPs. We all need to stick together :>)
    
    I suspect that we will take the tumor out before it gets to shrink much more. Right now, I mostly hope the damned cells never left the basin, but we'll see.
    
    Stay strong. And good luck with the MAGE trial.
- - July 17, 2011 at 3:32 pm
  - Quote
  Linny
  Participant
  Your comment on life in the "new normal" is spot-on.
  
  I hope that damn tumor shrinks even more and that you recover quickly from the surgery!
  
  Linda
- - July 17, 2011 at 6:05 pm
  - Quote
  Erinmay22
  Participant
  Glad to hear you got some 'good' news!
  - July 17, 2011 at 6:18 pm
    
    Quote
    Dynasysman
    Participant
    
    Thanks, Erin. Now I get some mental space to deal with the issues we were writing about last week: what to say, how to say it, and what to do with the awareness we can raise. When I have a better idea, I may seek some brainstorming support.
  - July 17, 2011 at 9:02 pm
    
    Quote
    Erinmay22
    Participant
    
    Yes you get a little relief to wrap your arms around it. First step – take care of yourself! 🙂 and yes when you're ready for brainstorming support – I'm sure there are lots who can lend some advice too 🙂
    
    Enjoy the rest of your weekend!
  - July 17, 2011 at 9:09 pm
    
    Quote
    Dynasysman
    Participant
    
    Yeah, well, if the US can win this soccer game, that would be a lot better…
  - July 17, 2011 at 9:26 pm
    
    Quote
    Erinmay22
    Participant
    
    ugh heartbreaker of a game… They had it in the bag… but guess it's a great story for Japan.
  - July 17, 2011 at 9:26 pm
    
    Quote
    Erinmay22
    Participant
    
    ugh heartbreaker of a game… They had it in the bag… but guess it's a great story for Japan.
  - July 17, 2011 at 9:09 pm
    
    Quote
    Dynasysman
    Participant
    
    Yeah, well, if the US can win this soccer game, that would be a lot better…
  - July 17, 2011 at 9:02 pm
    
    Quote
    Erinmay22
    Participant
    
    Yes you get a little relief to wrap your arms around it. First step – take care of yourself! 🙂 and yes when you're ready for brainstorming support – I'm sure there are lots who can lend some advice too 🙂
    
    Enjoy the rest of your weekend!
  - July 17, 2011 at 6:18 pm
    
    Quote
    Dynasysman
    Participant
    
    Thanks, Erin. Now I get some mental space to deal with the issues we were writing about last week: what to say, how to say it, and what to do with the awareness we can raise. When I have a better idea, I may seek some brainstorming support.
- - July 17, 2011 at 6:05 pm
  - Quote
  Erinmay22
  Participant
  Glad to hear you got some 'good' news!
- - July 17, 2011 at 9:03 pm
  - Quote
  lhaley
  Participant
  Did they do an FNA? Since it's shrinking it actually might be some other type of "thingy" in your body! But, even if it is mel it's great that it is shrinking!!
  
  Linda
  - July 17, 2011 at 9:12 pm
    
    Quote
    Dynasysman
    Participant
    
    They started with an FNA; it's how they found the melanoma in the first place. I also wonder whether 8mm to 5mm is actually "shrinking", which is literally true, or measurement error.
    
    I remember a post last week when your ONC or Tumor Board or someone decided that your immune system has been doing a fairly good job so far. So far, mine seems to be doing OK. Let's just hope we both stay strong…
  - July 17, 2011 at 9:12 pm
    
    Quote
    Dynasysman
    Participant
    
    They started with an FNA; it's how they found the melanoma in the first place. I also wonder whether 8mm to 5mm is actually "shrinking", which is literally true, or measurement error.
    
    I remember a post last week when your ONC or Tumor Board or someone decided that your immune system has been doing a fairly good job so far. So far, mine seems to be doing OK. Let's just hope we both stay strong…
- - July 17, 2011 at 9:03 pm
  - Quote
  lhaley
  Participant
  Did they do an FNA? Since it's shrinking it actually might be some other type of "thingy" in your body! But, even if it is mel it's great that it is shrinking!!
  
  Linda
- - July 17, 2011 at 11:24 pm
  - Quote
  Carol Taylor
  Participant
  "Life" in general takes on a whole new meaning. I was just reading your signature again. I'm thinking champagne & oysters sounds great in 9+ years and I hope you're making grand plans..but…I also hope you're celebrating all this good news! The world has plenty of wine & seafood! Enjoy!
  
  Thank You Lord!
  
  Grace and peace,
  
  Carol
- - July 17, 2011 at 11:24 pm
  - Quote
  Carol Taylor
  Participant
  "Life" in general takes on a whole new meaning. I was just reading your signature again. I'm thinking champagne & oysters sounds great in 9+ years and I hope you're making grand plans..but…I also hope you're celebrating all this good news! The world has plenty of wine & seafood! Enjoy!
  
  Thank You Lord!
  
  Grace and peace,
  
  Carol
  - July 18, 2011 at 2:48 am
    
    Quote
    Dynasysman
    Participant
    
    Any weekend has plenty of room for celebration! Particularly one with good news.
    
    Thanks, Carol.
  - July 18, 2011 at 2:48 am
    
    Quote
    Dynasysman
    Participant
    
    Any weekend has plenty of room for celebration! Particularly one with good news.
    
    Thanks, Carol.
- - July 18, 2011 at 1:00 am
  - Quote
  JerryfromFauq
  Participant
  I have the same question about size. Dinve where you slice a ball or an egg makes a difference in the diameter. How close are we to exactly the same place for subsequent scans? Close or exactly the same?
  
  Yes we hope for weird things. I wanted the lung spots to be pneumonia – WEREN'T.
  
  I wanted the groin growth to be an infection -weren't.
  
  I wanted the breast growth to be benign. It was.
  
  Want different things in this "NEW NORMAL" world.
  - July 18, 2011 at 2:52 am
    
    Quote
    Dynasysman
    Participant
    
    Supposedly, we are comparing two identical pictures from consecutive PET-CT scans. I'm told 8mm the first time, 5mm the second.
    
    If it is as close as the doctor seems to have indicated, well, that's pretty damned close. If not, well, we forge ahead.
    
    Congrats on the breast growth.
  - July 18, 2011 at 4:09 am
    
    Quote
    lhaley
    Participant
    
    I've been told that 2mm difference up or down is considered stable. This is because the way the scans slice the tumor depends on the size. That's also why it's always good to get scans done on the same machine to help alleviate some of the deviations.
    
    Linda
  - July 18, 2011 at 11:31 am
    
    Quote
    Dynasysman
    Participant
    
    Penn used a new machine, although I am told the shots were similar (don't know what that means until I meet with doctors today and tomorrow). New machine had one clear benefit: body extender enabled them to do entire scan in one picture, instead of the old "you put you head in, you put your head out, you get off the table and turn yourself about…" and then repeat the process toes first. Saved 25 minutes and was far simpler. As to comparability of pictures, we'll learn more today…
    
    Also, do we consider a 3mm drop stable (or am I merely splitting hairs here)?
  - July 18, 2011 at 12:52 pm
    
    Quote
    lhaley
    Participant
    
    I would think shrinkage but just wanted to bring up the comparing of the scans. Sounds great about the new machine! However, I always like the break when they turn me about and run to the bathroom! In Charlotte they make you drink 2 bottles of water before you get to the hospital, thenn you drink 2 huge cups of contrast mixed with soda. For me that = running to the bathroom for several hours and bathroom breaks are much appreciated!!
    
    Linda
  - July 18, 2011 at 12:52 pm
    
    Quote
    lhaley
    Participant
    
    I would think shrinkage but just wanted to bring up the comparing of the scans. Sounds great about the new machine! However, I always like the break when they turn me about and run to the bathroom! In Charlotte they make you drink 2 bottles of water before you get to the hospital, thenn you drink 2 huge cups of contrast mixed with soda. For me that = running to the bathroom for several hours and bathroom breaks are much appreciated!!
    
    Linda
  - July 18, 2011 at 11:31 am
    
    Quote
    Dynasysman
    Participant
    
    Penn used a new machine, although I am told the shots were similar (don't know what that means until I meet with doctors today and tomorrow). New machine had one clear benefit: body extender enabled them to do entire scan in one picture, instead of the old "you put you head in, you put your head out, you get off the table and turn yourself about…" and then repeat the process toes first. Saved 25 minutes and was far simpler. As to comparability of pictures, we'll learn more today…
    
    Also, do we consider a 3mm drop stable (or am I merely splitting hairs here)?
  - July 18, 2011 at 4:09 am
    
    Quote
    lhaley
    Participant
    
    I've been told that 2mm difference up or down is considered stable. This is because the way the scans slice the tumor depends on the size. That's also why it's always good to get scans done on the same machine to help alleviate some of the deviations.
    
    Linda
  - July 18, 2011 at 2:52 am
    
    Quote
    Dynasysman
    Participant
    
    Supposedly, we are comparing two identical pictures from consecutive PET-CT scans. I'm told 8mm the first time, 5mm the second.
    
    If it is as close as the doctor seems to have indicated, well, that's pretty damned close. If not, well, we forge ahead.
    
    Congrats on the breast growth.
- - July 18, 2011 at 1:00 am
  - Quote
  JerryfromFauq
  Participant
  I have the same question about size. Dinve where you slice a ball or an egg makes a difference in the diameter. How close are we to exactly the same place for subsequent scans? Close or exactly the same?
  
  Yes we hope for weird things. I wanted the lung spots to be pneumonia – WEREN'T.
  
  I wanted the groin growth to be an infection -weren't.
  
  I wanted the breast growth to be benign. It was.
  
  Want different things in this "NEW NORMAL" world.