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what to do next, please help

newperson's picture
newperson
Posts: 76
Joined: Mar 2010

Hello, I just find out this board and hope that I can get more help here.

Brief history here: My husband was dx. in Dec. 2006 with rectal cancer. He had chemo/radiation, surgery, chemo(folfox). But in Sept. 2008 his cancer came back. 6 months chemo(forfolri) cleared them out. But his CEA started climbing up right away from 2.8 to 10 within 5 months and PET scan confirmed that the cancer came back again to several places last Aug. So he started the same chemo(forfolri) last Sept. The first three chemo cycles dropped the CEA to 7.8 and PET scan showed some responses. We were hoping the chemo continue working, but after that, his CEA took turn to climb up every cycle instead. We got the result of CEA 15.3 and PET scan showing one place has more growth last friday. The doctor still thinks the chemo is working and wants my husband to continue on this chemo. He said it would be worse without the chemo. We kind of don't think the chemo is working for him because his CEA is even higher than before this chemo.

At this point, what should we do? Should we stay on this chemo, or change the chemo regiman, or do something else? My husband wants to quit the chemo. He didn't go to chemo this week. I'm so scared of that. Could it be getting worse soon without chemo? Does anyone use alternative treatment, like budwig diet, essiac, carrot juice, etc? How do these work for you? Could anybody here who had stage 4 share your successful experience in fighting this disease so we can keep up our hope to fight it harder? Please, please.

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Stage 4 here. 5.5 year survival so far. Fighting off my second recurrence now.

Does your husband have mets in the liver or lungs? Has he ever been given Avastin? It is quite helpful when dealing with metastatic disease. Has Erbitux been considered? It is a later stage treatment and works very well for those with the right type of tumour.

I would suggest you consider getting a second opinion from a large cancer center. Your oncologist should be understanding of this. In the meantime I would continue with the chemo. CEA can be a up and down during chemo. It sounds like he has responded well in the past.

Sounds like your husband is getting discouraged. I hope you find something that works for him. You'll get more info from others here.

Rob; In Vancouver

thready's picture
thready
Posts: 475
Joined: Sep 2009

We are glad you found us. You will find everyone here is in this fight with you! There are people here that have fought this thing from several different angles and you should be hearing from them soon. I am a IIIB-C and am finishing up my Folfox treatment. My doctor will not do the CEA levels during treatment unless the patient insists. The chemo can cause a rise in the CEA level, but since you have pet scans that support the rise I also would be concerned.

One thing that most everyone will tell you is to go get a second, third, forth opinion. Different doctors do different things and their might be other meds or treatments that might work better for your husband, even though it did not change my treatment I got second opinions about it and about radiation. It was comforting to know that I had options and I think your husband does also.

Remember we are here for you!
Jan

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I hope you and your husband will seek a second opinion. At least it will help you in the decision of what to do. I hope things go very well!

*hugs*
Gail

thready's picture
thready
Posts: 475
Joined: Sep 2009

I am bumping this up so she can hear from you all.
Jan

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"his CEA took turn to climb up every cycle "

When cancer cells die, they release CEA, so why wouldn't you
see a rise?

Forget the day-by-day accounts, it's like weighing yourself five
times a day.. what for? And get other opinions; you are entitled
to other opinions!

Cancer scares the hell out of all of us, so being frightened
isn't unusual.

I forced myself to acknowledge the fact that I am human and
mortal, I will not live forever. It doesn't really matter if I'm
110 years old, I'm not going to like it when my time grows
close... So I take the time I have now; right now, and do
what I feel I need to do. Give help, lend a hand, offer some
guidance, push an old PIA down some stairs...Ya'know...

Get other opinions, and if you find you want to continue the
chemo route, and if it's been working for the past 4 years...
then go for it..... but don't let fear guide you or sway you.

If the Onco feels it's killing enough bad stuff without killing
your OM, and your OM wants to continue... continue.

Cancer is serious business, but a vehicle accident, or the
neighbor's pit bull can do the trick also. Try to relax and
think things out. Let your own intuition and common sense
be your guide.

There are alternative options out here also, but like anything else,
you shouldn't grab at straws for panic's sake. Think things out.

Take your time to enjoy the time, and relax.... You guys will
be fine!!

John

newperson's picture
newperson
Posts: 76
Joined: Mar 2010

Thank you so much for your responses. I would like to get second or third opinions right away, but my husband just wanted to wait a month to see what will happen. I hope things wouldn't go too worse for him.

We've learnt from his history that CEA tells what it is. Whenever it rise, the PET scan would confirm the recurrence. At his first recurrence, the chemo (Folfiri+Avastin) worked very well, the CEA went down all the way through the treatment. But this time the CEA dropped a little at the beginning, then climbed up from the middle of the treatment. He has done 12 round of this chemo (Folfiri+Avastin same as first recurrence), the PET still shows growth. I'm worried because the chemo is not working for him. His Onc just said continuing on this chemo until it gets too worse, like CEA gos up to over 100. Why would we want to wait until it gets too worse? --Lucy

geotina's picture
geotina
Posts: 2120
Joined: Oct 2009

Where are you husband's mets? CEA can go up when mets are shrinking. If the board knew where the mets were located perhaps we could be of more help. Take care - Tina

bigCrandy
Posts: 75
Joined: Sep 2008

First of all I'm sorry that you and your husband are having to go through this very tough decision. I have been through the same rounds of chemo your husband went through. The first round of folfox did its job after my stage 3C surgery. 9 months later it returned in abdominal lymph nodes. After 9 months of folfiri + avastin it once again did its job. I was on avastin for 9 months with an elevating cea, now it is back in my lymph nodes and also has spread to my lungs. I've read a lot about a natural approach to fighting cancer using vitamins and herbs and eating certain foods or drinking green tea. I started doing this but I also chose to once again do the chemo thing(xeloda) I think I will do both and see what happens. I'm a fighter and the cancer is going to have to be tougher than me before I give up. It's a challenge but I'm turning it all over to God. I hope you and your husband make the decision that is right for the two of you and we will all be praying for you. Stay strong, Randy

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