Need clarification, please. 'in remission' vs. NED

sweetblood22

CajunEagle said:

So Mick,........
If you and I play "Chicken", and have a head on head collision and both of us don't make it, we'll be cured of Cancer ??

Larry

What he wrote does make
What he wrote does make sense to me. Thank you for posting his response, Mick. I also got the 60% statistic, but they pointed out that was for a normal patient and not one with Fanconi Anemia. I guess it's higher for me.

Funny about the game of chicken, because I thought if I crossed the street in town and died from getting hit by a bus I'm cured of cancer. Lol

I do understand why they are not giving me a PET scan. It's just there is a part of me that wants to hear that NED. Sort of gives you the all clear, for now sign. Clean PET is no guarantee it won't come back, either so I guess I'll just keep chugging along and try and hit that five year mark. . Hopefully longer.

timreichhart

sweetblood22 said:

What he wrote does make
What he wrote does make sense to me. Thank you for posting his response, Mick. I also got the 60% statistic, but they pointed out that was for a normal patient and not one with Fanconi Anemia. I guess it's higher for me.

Funny about the game of chicken, because I thought if I crossed the street in town and died from getting hit by a bus I'm cured of cancer. Lol

I do understand why they are not giving me a PET scan. It's just there is a part of me that wants to hear that NED. Sort of gives you the all clear, for now sign. Clean PET is no guarantee it won't come back, either so I guess I'll just keep chugging along and try and hit that five year mark. . Hopefully longer.

about this in remission vs ned
Well right after my last treatment (done in august) the doctors waited about 2 months which I had a PET scan last month and the chemo doctor said he didnt see any traces of cancer but wanted to keep a eye on it by doing PET scans every 6-8 months for the next 3 years to make sure it wount come back but he never said anything about going into in remission or ned.

Hondo

micktissue said:

Hey Keeper
Hi Dawn below is what my rad onco said in an email response to my question "making sense of remission, NED, and cured". I appreciate his honesty and his thinking makes a lot of sense to me. Most of what these guys can count on is statistics to guide their prognostications. Both my surgeon and rad onco have given me a 60% 5-year survival. Given the stats I'm kind of thinking of giving the PET scan a miss. Thoughts?

Best,

Mick

From Dr Lee:

"I almost never use the terms 'in remission' or 'cure' to describe the status of a patient.

"I believe that 'remission' is a term more often used by medical oncologists, and to me, the connotation is that there is definitely some microscopic disease remaining. We don't know that to be the case for you.

"The most solid definition of 'cure' I know: patient is cured if they die of something other than the cancer. Because there is always at least a small risk of recurrence, I don't use the term -- even though that is the goal of treatment in definitive cases like yours.

"I would classify you as 'NED' meaning -- exactly as the words say -- that there is currently no evidence of disease. We like using the 5yr NED endpoint for trials and such because, for most cancers, the vast majority of recurrences develop within the first 5 yrs. In fact, for HNSCC, 3yrs is a pretty good endpoint. Most patients who make it to 5yrs will die of something else, i.e., will ultimately be considered cured of their disease."

Hi Mick

I guess you could say I am just dyeing to be cured, anyway I am now worried because March 2011 makes my five years, just hope I don’t get ran over by a train.

Take care my friend

micktissue

CajunEagle said:

So Mick,........
If you and I play "Chicken", and have a head on head collision and both of us don't make it, we'll be cured of Cancer ??

Larry

LOL Larry
Good one. If I want to cured of cancer all I need to do is die from something else. The real thing is time. The longer we hold out the better the stats are. I found this definition of remission on medicinenet.com:

"Disappearance of the signs and symptoms of cancer or other disease. When this happens, the disease is said to be "in remission." A remission can be temporary or permanent."

Sounds like NED to me.

Best,

Mick

micktissue

sweetblood22 said:

What he wrote does make
What he wrote does make sense to me. Thank you for posting his response, Mick. I also got the 60% statistic, but they pointed out that was for a normal patient and not one with Fanconi Anemia. I guess it's higher for me.

Funny about the game of chicken, because I thought if I crossed the street in town and died from getting hit by a bus I'm cured of cancer. Lol

I do understand why they are not giving me a PET scan. It's just there is a part of me that wants to hear that NED. Sort of gives you the all clear, for now sign. Clean PET is no guarantee it won't come back, either so I guess I'll just keep chugging along and try and hit that five year mark. . Hopefully longer.

Dawn
Hey Dawn. I've been reflecting today about a line from the film Shawshank Redemption that has a great deal to say about acceptance and endurance: get busy living, or get busy dying. I'm choosing the former. If I get to choose how to go I'd rather choose a game of chicken on pogo sticks with Larry than cancer, but in the end I can't really get busy living if I'm worried about either.

So we're in the 60% club! I can't think of a *sweeter* clubmate.

Best,

Mick

micktissue

Hondo said:

Hi Mick

I guess you could say I am just dyeing to be cured, anyway I am now worried because March 2011 makes my five years, just hope I don’t get ran over by a train.

Take care my friend

LOL Hondo
Hey my friend I can understand the worry what with the photos that will circulate when you do the eeeeeeeeeeeeeeeee pogo stick feather dance!

Best,

Mick

sweetblood22

micktissue said:

Dawn
Hey Dawn. I've been reflecting today about a line from the film Shawshank Redemption that has a great deal to say about acceptance and endurance: get busy living, or get busy dying. I'm choosing the former. If I get to choose how to go I'd rather choose a game of chicken on pogo sticks with Larry than cancer, but in the end I can't really get busy living if I'm worried about either.

So we're in the 60% club! I can't think of a *sweeter* clubmate.

Best,

Mick

60% club.
I really like that whole, get busy living or get busy dying thing. I've definitely been trying to do the former as well. Definitely a good motto. I might be stealing that quote for a facebook status. Lol

charles55

I don't think cancer can read
I suppose in the end, these are all terms we invent which cancer totally ignores, darn it. I just want it to be gone. Forever.