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Stage 4

Josie60's picture
Josie60
Posts: 81
Joined: Jul 2012

If a person is stage 4 and becomes NED do you need to stay on chemo? I was stage 3 at the start but in Sept (post surgery) i had 7 additional lymph nodes light up. My lymph nodes are responding to the post op chemo, now just one of the seven is still light up on the recent PET scan. when I asked the oncologist how many more rounds i would need to go through he indicated I would be on chemo from now on with some breaks.

Can anyone tell me if I would happen to become NED and continued to have clean scans why would they continue treating with chemo. I realize I have a small chance of becoming NED but I'm trying to be positive

jaycc
Posts: 131
Joined: Jul 2012

Josie,

Everyone is different of course. What my husband was told by his doctors is they wanted to continue chemo because PET Scans may not pickup some of molecular small EC cancer cells. So they continue to ensure coverage of possible non-visible cells. I cant' tell you if this is common or not, just our situation. 

Joel C's picture
Joel C
Posts: 173
Joined: Mar 2011

Hi Josie,

 

I started out at 2B so I had chemo, radiation and MIE.  Nine months post MIE a node light up so additional surgery and more chemo.  I had another node quadruple in size on the CT and light up on the PET this past December.  I’ve opted for no additional treatment or surgery of any kind.  My oncologist agrees this is a reasonable decision and also made the comment that there is no evidence that additional treatment would be of any value at this point.  As he put it, if I want to feel we’ve done all we can, then we can do more chemo, if we want to feel we want to preserve quality of life for as long as possible then we skip the chemo.  This is such a personal decision and one I’m very sorry to see having to deal with. My recommendation is to ask the doctors to be completely honest with you and then make the decision you’re comfortable with and then don’t look back.

 

Best of luck,

Joel

NikiMo's picture
NikiMo
Posts: 346
Joined: Jul 2011

How are you feeling?  Since the personal email isn't working on CSN, this is my only means of letting you know I am thinking about you and your family.  

 

Sorry for highjacking the post.

 

Niki

Joel C's picture
Joel C
Posts: 173
Joined: Mar 2011

Hi Niki,

The family is doing great.  On my end I’m doing okay, just a little nausea and fatigue.  It’s great to hear from you, I hope all is well with you and Jeff.  If you would like to send me an email you can reach me at jm1collins@comast.net.

Take care,

Joel

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

Just wanted to send a HELLO! to both Niki & Joel.

 

Niki - I love seeing your smiling faces :)

 

Joel - I pray you, like Jerry Wright, are able to "confuse" your Oncologist for a long time to come.

 

Prayers & positive thoughts to all that have had to face this beast!

 

TerryV
PROUD wife to Nick

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