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Remission

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Just curious. When exactly does the remission start? Does it start after your last dose of chemo? Or is it from the result of your 1st follow-up scan after the chemo? I think it should start after your 1st scan result.

SophDan2's picture
SophDan2
Posts: 134
Joined: Jul 2017

Hi Lily,

 

It sounds like you got good information from your oncologist recently???? Though I got the all clear (NED) about a month and half ago, I'd prefer to go all the way back to the day after my last treatment November 9th 2017, as it seems farther away.

If you got the all clear, congrats to you; onward and upward!

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Hey Barry! Great to hear everything's well on your end. I have my followup appointment with my oncologist on 3/22/19 and I know he will set me up for my follow up scan and colonoscopy when I'm there. This will be my 2nd year follow up. Although I feel great but there's always that "what if". Undecided

SophDan2's picture
SophDan2
Posts: 134
Joined: Jul 2017

We can only control what we control Lily. If you feel well, you are; I'll be thinking about you and sending positive energy your way!

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

I agree and thank you Barry. Much appreciated as always for being there! 

Trubrit's picture
Trubrit
Posts: 4851
Joined: Jan 2013

I count my NED day from my last Cancer episode, which was liver surgery in April of 2014.  I think the Doctor's count it the same, so if you have had  a clear scan since the last treatment or surgery, then they would count it from that. 

Tru

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Funny thing is I never thought about this before, I was more focus on getting my treatments completed. All the times I saw my onoclogist I never asked him. I'm going to ask him when I see him on the 22nd. 

beaumontdave's picture
beaumontdave
Posts: 996
Joined: Aug 2013

Remission has been described to me as no increase in tumor size and activity since last checked, so your last chemo wouldn't tell you anything, whereas the scan would set a baseline to measure against.................................................Dave

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

I agree Dave. I tend to think that it should start from the outcome of your 1st scan after your treatments have been compelted. Can't rely on the chemo itself as we all know sometimes it doesn't work on some people. 

Annabelle41415's picture
Annabelle41415
Posts: 6212
Joined: Feb 2009

I've thought of it as after surgery and if they say you have clean margins but then a follow up with a scan.  If surgery goes well and scan is clean than remission you are.  My diagnosis was in November, 2008 but next scan wasn't until October, 2009 and that is when it was determined there was No Evidence of Disease. 

Kim

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

I finished my chemo in February 2018. Had my 1st follow up colonoscopy in April 2018 and 1st follow up scan in May 2018. Both results came back NED. I will have my 2nd followup this spring. Usually this time of the year I always start to feel a bit jittery. Undecided

Annabelle41415's picture
Annabelle41415
Posts: 6212
Joined: Feb 2009

Yup know the feeling that you are in.  It's hard for the upcoming tests to stay focused on the past great news.  Just keep thinking you were NED back last year and this year it should be the same.  Mine was every 6 month scan for the first 3 years.  Glad that your last report was good.

Kim

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Thank you Kim!

Kazenmax's picture
Kazenmax
Posts: 355
Joined: Feb 2016

Right after my surgery, my doctor said I was cancer free. Even though I still did the chemo to get any stray cancer cells. I started the count right then and there. Lasted only 19 months and then it recurred in my lung. Again that surgeon said that I was cancer free and I did chemo again. restarted my count last April. It’s almost like if I need to it count like this For good luck. LOL. The more days cancer free, maybe the more I will have.

k

Djspareme's picture
Djspareme
Posts: 18
Joined: Mar 2019

I got my remission news yesterday!  Especially pleased as my original prognosis was 8 to 14 months.  Have just started my 25th month.  Had a great oncologist who treated my cancer aggressively.  Surgery, chemo, more surgery and more chemo.  Yesterday i got the good news.  Have 8 more rounds of Xeloda for a total of 24.  Scans scheduled for May, if clean again repeat the scans in November and port removal at Christmas

Annabelle41415's picture
Annabelle41415
Posts: 6212
Joined: Feb 2009

That is excellent news and so glad to hear you got some great news.  It helps to have a great oncologist and one that is going to work with you.  Sounds like you had someone that had "you" involved in what was going to happen.  Wishing that the next scan is as good as this one, which I'm sure it will be.

Kim

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Welcome DJ and congratulations on the great news! It will be a great Christmas gift to have your port removed if everything goes well. While one accepts the treatment well someone else may not, so I would ignore the survival statistic as our immune system levels are all different.  I'll be seeing my oncologist next week and he certainly will be scheduling my upcoming CT scan probably sometimes in April. So here's wishing both of us with the good results! 

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

My take on this (perhaps because I was Stage 4 when diagnosed 14 years ago) is that none of this matters.  You will either have a recurrence or you won't, and even though the 5 year mark, from whatever date you choose, is a great sign, it certainly does not mean that the cancer can never return.

 

National Cancer Institute defines remission as follows:

"A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body. "

Don't mean to be a downer, but the way I see it, every NED day is a good one, and once you are NED does it really matter when it started?

 

Take care,

Betsy

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Sorry I'm late jumping on here but I want to say that for you, Lily, or anyone else that gets the good news, I am beyond happy for you and I pray it will last forever. We need to hear this news so badly! 

Jan

Butt's picture
Butt
Posts: 318
Joined: May 2018

I want it!

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