So many questions

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tater
Posts: 133
Joined: Wed Jul 19, 2017 5:53 pm

Re: So many questions

Postby tater » Sat Jul 22, 2017 6:02 pm

Lee wrote:
tater wrote:So if I understand you you are thinking that the four months between scans is too short of a time for 6 mm to present them selves. . . .


I have no medical training, butt I would recommend a 2nd opinion on that. Huntsman might be a good choice

Have they done a CEA test on her? Has there been an increase in numbers?

Good luck

Lee


On march 3 cea was 26. Mid April before radiation 29 after radiation it dropped to 2.1 and two months after that right before chemo 2.3. Not sure what all that means but that is what it is.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: So many questions

Postby Lee » Sat Jul 22, 2017 6:59 pm

tater wrote:On march 3 cea was 26. Mid April before radiation 29 after radiation it dropped to 2.1 and two months after that right before chemo 2.3. Not sure what all that means but that is what it is.


Cancer does not follow a rule book. We try to do everything right, butt cancer can still throw a curve ball. Many times people who have liver mets will see an increase in CEA numbers (again cancer does not follow the rules), butt based on everything I've read from you, I'm not saying there is a met in her liver or not. Butt if it were me, I would want an expert 2nd opinion on those results. My recommendation at a major cancer treatment center.

Your wife is recently diagnosed, but for many people CEA is a good indicator for watching cancer activity. What they are looking for is an upward trend over a period of time, like every 3 months. When I was diagnosed, my CEA was something around 25ish (honestly can't remember exact number). Following my surgery and prior to leaving hospital, it had dropped to 3.5 (that number I do remember). 1/2 threw chemo, it jumped to 7.? , scared me to dead. That was when I learned when cancer cells are dying, they emit this protein. That is what the CEA is picking up. I truly believe chemo was killing off those remaining stray cells in me. After chemo, my numbers dropped back into a normal range and is so today.

Some people can have cancer activity and the CEA never changes. In those cases, CEA is not an good monitor. The fact that your wife had an out or range # when diagnosed (26 &29) then dropped to a normal range (2.1 & 2.3) following radiation is a good sign. For many people when there is liver activity, CEA will go up (again cancer does not follow a rule book), if there is liver activity, CEA did not go up for her.

If it is a liver mets, know that many people have gone on to NED and are very much alive today. I believe you have met a few on this board already. So never give up the hope.

Hope this helps,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

tater
Posts: 133
Joined: Wed Jul 19, 2017 5:53 pm

Re: So many questions

Postby tater » Thu Aug 10, 2017 10:29 pm

Well we went to Huntsman Cancer Institute this week. It was interesting I will say that. The oncologist deals only with GI related cancers so that was good. He took her history and had looked at all of the scans. When looking at the liver scan he said that the MRI basically gave you nothing and it was best seen on the CT. He looked at it and it was interesting where he would say well maybe this is one of the spots and maybe one here and said that their were possibly three spots in the right lobe. He said they are very small but could support assuming they are cancer due to the amount of cancer in her pelvic region. He thought a couple of months of FOLFOX should clean it up. She has no mutations on a 42 gene test and said that later on we should test with a test that looks for close at 300 genes. The issue now is when to time the surgery and do you go at the pelvis or liver first? He thinks that we will have to remove the entire right side of the liver because the spots after chemo will be so small that they will not be visible to the surgeon. He was going to take it to tumor board next week and let us know. He really like our surgical team even though they are not within his network so I felt really good about that. He did tell us 65-85% or re-occurrence :-(

So questions can you have your liver biopsied?
Would you operate on the liver or pelvis first?

Thanks
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI


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