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Adjuvant chemotherapy vs. waiting for recurrence?

hippiechicks's picture
hippiechicks
Posts: 363
Joined: Sep 2012

Looking for some advise on this one...has anyone been advised not to have adjuvant therapy after surgery?  I have been told to wait for a recurrence and that there is an extremely high risk it will happen.  I have had several opinions on this and getting the same answer. But also in the next statement I hear that if I want chemo they will certainly do it but just cannot guarantee it will do any good.  How does one make that decision? I had just finished 12 rounds of 5FU in May when my recurrence appeared in July, so they are saying it is not worth using that drug again as it did not appear to have worked. I just had a clear scan this week and cea .8, which makes me feel like now is the time to mop um' up!

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

It is hard to say what is the right answer.  After my surgery I was offered the option of chemo or no chemo....the thinking was that they gobe everything in surgery.   Iopened for the chemo... 12 treatments of Folfox.  I am not sure if it did any good... I didn't want to take a chance with a wait and see approach.  I did okay on the Folfox... I do have neuropathy but all other side effects are manageable.  Right now I am going to have to have a MRI for lesions they found on my liver.

 

Alex

Coppercent
Posts: 145
Joined: Jan 2012

I chose to do adjuvant chemor after my diagnosis.  The standard was 12 Folfox but I chose to do only 8 because there was not research proving 6, 8, or 10 was better.  If I had a recurrance, I would probably not do adjuvant chemo.  I would wait, watch and hit it when it returned. I am being followed pretty closely.  That being said, I don't get as many PET/CT scans as they say because I think it is too much radiation on an already overly radiated body.  Plus the scans are my whole body not just my abdomen.  It is all a guessing game when it comes down to it.  Good luck on your decision.  Whatever you decide will be the right one.  Because you do not know what the results would have been if you would have done the opposite of what you chose. 

Sundanceh's picture
Sundanceh
Posts: 4312
Joined: Jun 2009

What are we mopping up?

Once cancer metastasizes, its akin to leaving the barn door open and having the livestock bolt for the prairie.

The human body is a circulatory system...cancer is a systemic disease...for every 1cm of tumor, that equates to a BILLION cancer cells. 

It's like trying to put out a fire with a garden hose.  Cancer is a moving target and therefore we spend a great deal of time chasing. 

There is no guarantee either way of which approach is beneficial...and that's why your doctor straddles both sides of the fence...because, they really don't know with any accuracy. 

Wait and watch is not a bad approach....actually, it can be a good one.   It leaves the chemos on the table and effective at the time you might need to do one of them.  Prolonged use of any chemo can (over a time TBD) can desensitize the body to the chemo's effectiveness...and then the treatment can become less effective...or stop working altogether.

On the other hand, if you're new to the fight and you're early in the game...there's the thought of thowing everything you can add it right now....in the early stages.

And it's here, that none of us can ever really answer the question...just like the docs...because we all respond differently...and none of us really know...for ourselves...and especially for others. 

I'm wondering why they only had you doing 5fu...instead of one of the front line players - Oxaliplatin & Irinotecan? 

And normally, they would piggyback the 5fu with either of those chemos to strengthen the cocktail.

5fu is the type of chemo that can hold the line or prevent tumors from growing so fast....but its intent is not to cure.   The real truth is that chemo (in and of itself) does not cure cancer...it usually takes a multi-faced adjuvant approach........Surgery / Radiation / Chemo

And no guarantees that even doing those will result in long term remission...though one does expect response and additional longevity from doing them. 

You've got a clear scan....a CEA of .8.....and no visible tumor.

Will recurrence find you? 

Only Time will answer that one...for you...for all of us. 

I've had cancer 3x in 8.7 years.....did the surgeries, the radiation, and the chemos....and still recurred. 

My last fight has put me back in a remissive state....currently the longest clear streak I've ever experienced....in the latter stages of what has been a long fight.

I suspect cancer will find me for #4 at some point...but I don't know....we're watching and waiting. 

Unfortunately, recurrence is prevalent with our disease...and as such, it's often where the real battle of cancer is fought.  Most of our battles are seldom won with the first salvo fired.

Wish we could give everyone (including ourselves) the definitive answer...recurrence is what makes cancer so tough. 

Whatever decision you make will be the right one for you.  Best of luck!

-Craig

 

hippiechicks's picture
hippiechicks
Posts: 363
Joined: Sep 2012

Sorry Craig...I should have mentioned in that post that I did have oxali. along with the 5FU and did not do well with it and therefore  they will not use that again.  Also, radiation is out of the question for me.  I do understand both sides of the reasoning...I just am having such a hard time with this decision. I also know that is part of the reason for the wait and watch opinions.  I have had cancer 2x's now in less than one year...so, no chemo does sound appealing. I am just so worried about my children and feel like I need to put every chance I can into a cure.  Hearing other stories and opinions are helpful ... thanks for the response!!

annalexandria's picture
annalexandria
Posts: 2297
Joined: Oct 2011

but I would probably go with my doctor's advice, so long as I had a decent relationship with him/her and felt that there was a reasonable level of trust in the relationship.  Of course, just to play devil's advocate with myself, I did follow my doc's advice at the time (to do mop up chemo after surgery with no visible tumor) and now wish that I hadn't done so, so what do I know?  Sometimes it feels like the blind leading the blind.  I've heard it said that whatever choice you make, it needs to leave you with no regrets later...not in terms of outcomes, but rather in terms of what your feelings are about those outcomes, and the connection to the choices you make now.  Not sure if that's making any sense, so i'll stop now.  AA

Sundanceh's picture
Sundanceh
Posts: 4312
Joined: Jun 2009

Can't read this:(

Wanted to read what my favorite librarian had to say:)

hippiechicks's picture
hippiechicks
Posts: 363
Joined: Sep 2012

LOL...thought my chemo brain and bad eyes came back with a vengence there for a minute!! Hope to be able to read this soon, I think we are in similar situations and I value your response!!

John23
Posts: 1832
Joined: Jan 2007

but I would probably go with my doctor's advice, so long as I had a decent relationship with him/her and felt that there was a reasonable level of trust in the relationship.  Of course, just to play devil's advocate with myself, I did follow my doc's advice at the time (to do mop up chemo after surgery with no visible tumor) and now wish that I hadn't done so, so what do I know?  Sometimes it feels like the blind leading the blind.  I've heard it said that whatever choice you make, it needs to leave you with no regrets later...not in terms of outcomes, but rather in terms of what your feelings are about those outcomes, and the connection to the choices you make now.  Not sure if that's making any sense, so i'll stop now.  AA

hippiechicks's picture
hippiechicks
Posts: 363
Joined: Sep 2012

thank you John...I was going to attempt the translation and I was kicked off the site for a bit...this site seems to act stange at times.

 

annalexandria's picture
annalexandria
Posts: 2297
Joined: Oct 2011

I'm pretty sure I wasn't on drugs when I made that post.  Or at least nothing stronger than usual.  I can see it just fine...so what wuz you all seein'?  AA

hippiechicks's picture
hippiechicks
Posts: 363
Joined: Sep 2012

I am not sure what language it posted in ... but it is not English. lol  Undecided

hippiechicks's picture
hippiechicks
Posts: 363
Joined: Sep 2012

I am not sure what language it posted in ... but it is not English. lol  Undecided

annalexandria's picture
annalexandria
Posts: 2297
Joined: Oct 2011

that's kind of weird.  I know CSN can be glitchy at times, but changing our posts into foreign languages ia a bit much.

Lovekitties's picture
Lovekitties
Posts: 2990
Joined: Jan 2010

It looks like you got the "symbol" font, at least according to MS Word.

Had to copy to Word and request it to make as destination font in order to "translate".

Sure wish they would let us set a preferred font so we didn't have to set it each time...either that or set a perm font with a size which is compatible with older eyes or eyesight impacted by chemo.

 

annalexandria's picture
annalexandria
Posts: 2297
Joined: Oct 2011

the tiny font is killing my eyes.  And clearly I can't be trusted to hit the right keys with my neuropathic fingers when I go to change the size!

tanstaafl's picture
tanstaafl
Posts: 1006
Joined: Oct 2010

is not acceptable advice at our house.   What to do is of course a vexing question.

We (mostly me) have gotten several oncology opinions and those parts that made no sense or were obviously uninformed, we chose to go with the papers, the math and logic.   We monitor multiple biomarkers frequently, and think only active treatments with little or no side effects can prevent recurrence long term.  

It takes several components for my wife's chemo to become effective and keep the CEA stable in the 2 - 2.7 range long term.      She feels good and has no chemo sick days either.

Too little (daily oral UFT) 5FU-LV, CEA rises with a doubling time ~35 days.   [Stage IV without oxi-, iri-]

Even with 5FU-LV + LEF.org stuff + IV C, etc, if no menaquinone-4,  CEA rises with a doubling time ~35 days. 

If no megadose vitamin C, menaquinone-4 doesn't work so well or at all, in both personal lab tests and papers.  

Tissues positive for CA19-9, CSLEX - likely recurrence and short fuse unless use cimetidine (or maybe avastin) according to papers.

Tissues positive for COX2 - likely recurrence and short fuse unless use COX2 inhibitors (or maybe celecoxib if necessary) according to papers.

PSK and 1,3 beta glucans have helped the MCV biomarker for 5FU-LV treatment stay optimal and the CBC counts in the acceptable range. 

Surgery of the biggest mets restored chemo sensitivity for my wife. 

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