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Soaring CEA

damama24
Posts: 175
Joined: Nov 2009

Not sure whats going to happen next. Had CEA checked today and results were not what I'd hoped for. Once again it has shot up. Was 286.2 on 8/17, 431.4 on 9/28 and today 10/25 it's up to 712.3. Have talk with onc scheduled for tomorrow. Since this is the second time I've been on Folfox and Avastin not sure where we go from here. In between the two cycles of Folfox I was on Irinotecan and Vectibix for a year, it stopped being effective so back to Folfox. I'm just really bummed right now. I'm just not sure there is reason to keep going with this, nothing seems to work for long. I'm afraid I'm reaching the point where chemo is possibly doing more harm than good.
I know there are many folks who have found success with alternative treatments. I've looked into them a little. I don't feel that they would be a path for me. I have had no surgeries to remove any of the cancer in my body and feel that nothing in TCM would help to stop the cancer. Most of the folks who use TCM had surgery first and the choose the alternative to help keep the cancer from comming back and to help boost their bodies immune system. That is great, I just don't think TCM would be for some one like me. The expense is way beyond my means also.
Sorry to be so negative but I'm almost at the end of my rope with all this. I seem to be always taking one step forward and two steps back. If there is no way for the drs to keep my cancer under control I want them to be honest with me so I can make the proper decision for me. Thanks for listening and letting me vent.

Deb

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

being bummed at this point is perfectly understandable. You poor thing...don't be sorry about being negative....just vent away.

I hope that something will turn up for you that can get you around the next corner.

All best love and wishes

maggie

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Hope you find an smooth plan for your issues but please hang there Deb,
Praying for you! .

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

This is so frustrating there has be other chemo that can help. Has your onc suggested erbitux? I tried it but had a lot of side effects but found out later i shouldn't have gotten in the first place. but i heard that if your capable of getting it then it might help shrink tumors. Praying for the best solution for you.
Jeff

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I have followed your story closely for almost 2 years now. You have had a rough go of it for as long as I've talked to you. Your cancer is very agressive and stubborn and I've heard your pain on some posts when you were really having an extra difficult time at those moments of doubt and uncertainty.

Your mention of the chemo doing more harm than good resonated with me this evening...a few months ago when I was nearing my last treatments, I was very sick from Folfiri and just the whole grueling year. I wrote a post called "The Chemo Wars - What's the Real Story?"

Here is the link if you want to read the post: http://csn.cancer.org/node/213217

It talks about the long term effects of chemo and how over time it inevitably fails us as the cancer cells adapt to the chemical and become desensitized. You might get something out of that post.

Our stories are different but still we share some similarities. You've fought continously and I've fought for almost 7 1/2 years and had cancer 3x during that span. The last 4 years have been the hardest as we never got more than a scan cycle before we saw something else etc.etc.

I fought the last 12 months on my 3rd recurrence and there were many dark spots. The lung surgery was difficult enough, but paled in comparison to the devastation that radiation and Folfiri did to me.

Those harsh treatments broke my spirit and had me longing more for death than life. My body is just getting too tired to keep this up indefinitely. When I came off my last chemo cycle, I was literally at the end, as you said.

This time the Folfiri took all of my quality of life away and I realized that if this was all there ever was going to be - then it was time to hang it up and call it a career. The only reason I stayed with it was because we expected some good response and we did get that.

If it had failed, my fight certainly would have turned another direction. Knowing this stuff failed and taking that hit, would have me re-thinking as well. I so get what you are saying in your post.

I get it so much, that I wanted to share part of Chapter XV that I'm almost finished writing. The chapter title is "When Is It Time to Say Enough?"

In that chapter, I examined my own thoughts and feelings on if the drugs were really going to work and was it worth continuing the fight or trying to enjoy some quality time.

I'm talking about reaching that stage in our journeys when we finally discover "The Path of Acceptance" in ending our fights and enjoying the time that we have left.

So, here's a brief excerpt from that chapter and to me it speaks to the last sentence in your post..."If there is no way for the drs to keep my cancer under control I want them to be honest with me so I can make the proper decision for me"...Deb

That line touched me this evening and your story is another reminder of the things I'm trying to write about and how they pertain to real people - people that I've come to know and care about.

Excerpt from Chapter XV:

Life is interaction through our senses: Smell, Taste, Touch, Sight and Sound.

Without these key ingredients then where is the life? By my definition, without these qualities available to some degree at least, all that I would be left with is an existence – and that’s not going to be enough – for me.

All of which leads me to this next point.

If the treatments have worn us out to the point where we are not totally incapacitated, but still have a little gas left in the tank, should we continue on to fight? Or should we take the brave stance with a bold new approach to try something different? Do we measure our lives by the days on the calendar? Or do we indulge ourselves with the tapestries and textures of this life, while we still have that last gasp in us?

If the inevitable were to befall any one of us, doesn’t it behoove us to finally reach that acceptance in our lives where we choose to spend whatever remaining time that we have with our loved ones doing what we choose, rather than squandering that quality time in the fight when all hope and chance have ‘really’ been removed?

These are deep and thoughtful questions to be sure. I suppose the real answers can only come when each one of us finally stands at that crossroad. And then we have to make that decision.

BREAK - end of excerpt.

I don't know what the right answer is, Debbie. I stood at a similar crossroads that you are at and that's where all of these thoughts from that chapter came from. I hate to hear how things are going for you right now - with cancer progressing and the treatments becoming effective, I wish I had a clear path to guide you to.

You've done all the major players for our cancers. Are clinical trials a possibility? Or would you even want to pursue that? I will continue to follow your story and I wish I could be of more help - will continue to keep you in my thoughts.

-Craig

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Hun, be careful of their honesty, a few of us got their honest opinion, which was about 6 months left, and we're still here and doing quite well.
There are other chemo's that you haven't tried yet, and perhaps it's time to discuss that with your onc and consider them.
And I know that it gets awful tiresome, living and worrying through this cancer cr@p, so vent away, it does help, this venting.
Thinking of you girl,
Winter Marie

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

I haven't been keeping up with everyone's fight, so I'm not familiar
with what you've been through, but it sure sounds like a rough ride!

You mentioned not having any surgeries? Have you had a decent
colorectal surgeon inform you, and have you had other surgeon's
opinions regarding the inability to operate? It seems odd, that a
surgeon would steer clear of operating, or suggesting RFA, or other
newer techniques to get the cancer out...(?)

And as far as TCM, or other alternative modalities.... They do not
have to be expensive. The herbs I took (the list is on the blog), most
cost between $5 and $12 per pound and lasted over a month. I used 7 herbs,
for a whopping $100 or so per month and a half of herbal broths.

You would need a qualified TCM practitioner or herbalist to
be able to turn to, just in case you need advice, but aside from
that...? With true TCM practices, herbs are not used continuously,
you only use them until your body and functions have been corrected.

The herbs I had used are dose dependent, and stop working when
you stop taking them. It's not the true application of TCM, but
I am here anyway.

You can use most all "alternatives" along with chemo or radiation
to offset the side effects, and/or to enhance the effect of the chemical
treatments. It's time for you to start thinking "outside of the box", and
let your basic survival instincts and intuition guide you. Physicians
make mistakes, and are held to their beliefs, but you needn't be limited
to their opinions.

You'll do OK, but you'll have to trust in yourself; in your own survival
instincts. You were provided those instincts at birth, just as we all were,
and it's time to learn to listen to them!

My best hopes are directed at you,

John

Bear23's picture
Bear23
Posts: 84
Joined: Jan 2010

It seems like you and I are on similar paths. I, too, have been on Folfox, then Avastin with 5FU then the Vectibix and Irinotecan for the past 15 months. Now my tumors are growing again. I am going on Xeloda, Oxi and Avastin. Deb, I am not sure where you go from here. I keep hoping that in the next year we will have some new drugs that will be approved. It is very disheartening and hard to deal with. Vent all you want. I do. Just rambling here but I've been thinking of Gemzar but not quite sure. I don't know much about it. Maybe someone else can pop in here about that.

I just try to keep going forward. It is hard when you go backwards to go forward. What else is there to do until we are ready to stop?

Valerie

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

calmness, laughter, diet, meditation are cheap and all help fight cancer, many have had miraculous success, who i have met personally and been inspired on my own healing journey.

I hope you find some peace where ever you can doing whatever is best for you.

hugs,
Pete

Livingbyfaith's picture
Livingbyfaith
Posts: 56
Joined: Sep 2007

not sure what the answer is however my husband started at 3000 in March, now on xelox and down to 183. He has a large liver tumor, was 10x15 cm, now 9x10. You might try a second opinion, we are on our third oncologist and very happy with this one. Pray for wisdom. I will pray for you. I saw where Bayer just took a new drug that works out of trial trying to get it approved for use. We just need to buy time.

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