Your stories - Anyone with Stage 3 decided against chemo?

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healingintent
Posts: 8
Joined: Wed Aug 21, 2013 12:20 am

Your stories - Anyone with Stage 3 decided against chemo?

Postby healingintent » Thu Aug 22, 2013 6:50 pm

Hi folks,

Is there anyone on this board who decided aganist chemo with Stage 3 colon cancer, following a colon resection (ideally sigmoid with no treatment prior to the op), but were found to have some lymph nodes cancerous that were removed durring the op?

We've been told by the oncologist that there is a 50% chance that the cancer is all gone, but they recommend chemo as a precaution/insurance.

I'd be really interested to hear your experiences, and what you chose to do instead of the chemo. I'd love to hear some success stories!

Thanks

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Voxx66
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Re: Your stories - Anyone with Stage 3 decided against chemo

Postby Voxx66 » Thu Aug 22, 2013 7:17 pm

This is probably not what you want to hear but I think you should hear it anyway. I opted for no chemo based on the stats for a IIa staging. I rolled the dice and lost. My cancer is back in my liver and it is a whole other level of seriousness. I don't regret my choice as I think it was logical but obviously if I could have a do over I would take the chemo. The stats however are pretty much rock solid for stage III's. It is absolutely in your best interests to take the chemo. If you want to roll the dice you can but not doing chemo with lymph node involvement is a bad bet.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

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John72
Posts: 339
Joined: Fri Jan 28, 2011 3:06 am
Location: Los Angeles

Re: Your stories - Anyone with Stage 3 decided against chemo

Postby John72 » Thu Aug 22, 2013 7:33 pm

With spread to lymph nodes, IMO, and I believe in the opinion of most here, you pretty much HAVE to undergo chemo treatment. I forget the exact numbers, but the chance of cure is significant enough to warrant the risks of chemo. This is probably the 15th time I've seen this exact question in the three years I've been posting here.

Ill flip this around....what specifically do you believe will happen to you if you undergo current standards of treatment including chemo?
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

Redtexa5
Posts: 181
Joined: Thu Aug 02, 2012 11:41 pm
Location: Austin, Texas

Re: Your stories - Anyone with Stage 3 decided against chemo

Postby Redtexa5 » Thu Aug 22, 2013 7:38 pm

No, as a stage 3 I never thought not to do Chemo, as Voxx put it the stats for stage 3's are very clear. Frankly I don't know were your doctor is getting that 50% number from as it doesn't match what I found, and if the cancer has been found in the Lymphatic System it has spread. Not doing Chemo is just stupid at that point.

Look many people have problems tolerating Chemo, but not all and I had no problems to speak of and that is just as likely as having a bad reaction.

Just my opinion.
Start of symptoms 9/08
Dx Stage IIIc/IV CC 2/09
T4bNxM0
Colostomy 2/09
Radiation/5FU 3/09-5/09
FOLFOX 6 6/09-8/09
9/09 Tumor removed Colostomy reversed
10/09-1/10 FOLFOX 6
3/10-2/15 NED
2/14 Colonoscopy NED
2/15 Colonoscopy NED
6/15 PET/CT NED
2/17 7 years NED

healingintent
Posts: 8
Joined: Wed Aug 21, 2013 12:20 am

Re: Your stories - Anyone with Stage 3 decided against chemo

Postby healingintent » Thu Aug 22, 2013 7:44 pm

I guess the concern is the chemo doing more harm than good. We're very new to all this - everything has happened so quickly. I guess the question I am trying to ask is if the cancer is all clear, what's the worst the chemo could potentially do long-term? Both surgeon and oncologist said with the discouver of 3 in 15 lymph nodes (all since removed) and staging at 3a, they talk about the chemo being "precautionary" (and are obviously strongly recommending it).

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Voxx66
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Facebook Username: Michael Void Ward

Re: Your stories - Anyone with Stage 3 decided against chemo

Postby Voxx66 » Thu Aug 22, 2013 7:54 pm

The main problem is you can't know it is in fact all clear. Micro-metastases won't show on any current scan. Lymph involvement means it has already escaped the colon. Even the surgery itself carries a risk of detaching cancer cells and spreading metastases. I understand the fear of chemo. I have it too and mine starts Monday. But if you refuse chemo you are passing on your best chance to actually beat this thing.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

curious56
Posts: 166
Joined: Fri Feb 01, 2013 6:01 pm

Re: Your stories - Anyone with Stage 3 decided against chemo

Postby curious56 » Thu Aug 22, 2013 8:26 pm

Go here and enter your info. First time say NO CHEMO after surgery. Look at the % NED (no evidence of disease) for 5 years. Second time say CHEMO after surgery. Again, look at the % NED

http://nomograms.mskcc.org/Colorectal/PostSurgery.aspx

Chemo almost killed me -- only took Oxaliplatin one time and Xeloda one day. (I do have a serious autoimmune that I'm also dealing with.) I have a 40% chance WITHOUT chemo and a 47% WITH chemo of being NED at five years.

It is your call -- is the % you find worth it or not???

Regardless, start taking Tagamet (cimetidine) NOW!!
dx 12/12 with CC Stage IIIB - T3N2aMO
6/18 nodes +
Resection sigmoid 12/12
Xelox 2/13 -- stopped, BAD side effects
Vegan and supplements
Clear scan 11/13
Met to abdomen - surgery 7/14
Philippians 4:6-7

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O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: Your stories - Anyone with Stage 3 decided against chemo

Postby O Stoma Mia » Thu Aug 22, 2013 8:33 pm

Voxx66 wrote:...obviously if I could have a do over I would take the chemo.


Voxx66 -- I note from your posts that you are going to be starting Chemo on 8/26/13. Which treatment regimen have you decided to use?

Cured
Posts: 565
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: Your stories - Anyone with Stage 3 decided against chemo

Postby Cured » Thu Aug 22, 2013 9:18 pm

Healingintent, I know there are lots of uncertain feelings when someone is diagnosed with....CANCER. But Cancer is a word - not a sentence.

Your wife needs the Chemo - unless Drs advise otherwise. By definition, as Stage 3 there were microtumors which spread through the bloodstream from the lymph nodes. Now you want to help your body fight them. The Chemo does just that. It is something to endure, so that she can get better for the long run.

The Chemo is not pretty, but with your support your wife can get through it.

She needs to at least walk and get some exercise & fresh air. Eat as healthy as she can.

Praying for the best for both of you.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA to 4.5 after 1 chemo
After 8rds CEA 3
CEA 1.8, 2.3,1.7,2.2,5.7,5.3
12 rds Folfiri
Avastin evy 3 wks
Seizure Anti-seiz meds work-no driving for 6 mo
4-20PET: Lung spots=Chemo

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Voxx66
Posts: 1844
Joined: Wed Jul 24, 2013 10:22 pm
Facebook Username: Michael Void Ward

Re: Your stories - Anyone with Stage 3 decided against chemo

Postby Voxx66 » Thu Aug 22, 2013 9:34 pm

O stoma mia - After much debate I am starting with FOLFOX + Avastin. I might do better with FOLFIRI but for now I will give this a try. Doc wants 3 or 4 cycles and then a reassessment.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

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John72
Posts: 339
Joined: Fri Jan 28, 2011 3:06 am
Location: Los Angeles

Re: Your stories - Anyone with Stage 3 decided against chemo

Postby John72 » Thu Aug 22, 2013 9:36 pm

healingintent wrote:I guess the concern is the chemo doing more harm than good. We're very new to all this - everything has happened so quickly. I guess the question I am trying to ask is if the cancer is all clear, what's the worst the chemo could potentially do long-term? Both surgeon and oncologist said with the discouver of 3 in 15 lymph nodes (all since removed) and staging at 3a, they talk about the chemo being "precautionary" (and are obviously strongly recommending it).


Well you will not know if the cancer is clear since you have some metastis.

Chemo long term varies. For most people, there are not long term consequences. Others have various issues such as long term neuropathy(FWIW you likely won't get out of all this treatment without some long term issue...for me its restroom stuff thats related to the surgery and radiation....for others it varies).

The short term consequences from what I've observed from posters here are marginal in most people, but in some people can be very severe. I only know of a couple people that experienced severe long term side effects from chemo, but it does happen.

One more thing of note...that number Curious posted....40% vs 47%....thats a little deceiving as it looks like a 7% difference. Actually its somewhere over a 15% increased change(40/47). So take that into account.

I would advise against reading web sites dedicated to "alternative therapies". Often these are untested methods...at least in a scientific and medical manner. These sites typically make claims that are vague and difficult to argue against due to their non specific nature. Things like "cancer is poison" and "sugar is a cancer feeder" and "our bodies can heal themselves"

Here, and on other website forums where colon cancer survivors post, along with your doctors, and perhaps clinical studies(though your doctor will probably be your best source for this), you have a wealth of information available from people who actually went through this.
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

livingbyfaith
Posts: 430
Joined: Wed Dec 31, 2008 5:06 pm

Re: Your stories - Anyone with Stage 3 decided against chemo

Postby livingbyfaith » Thu Aug 22, 2013 10:10 pm

My husband stage III did not get chemo, cancer returned in liver several years later. I actually think chemo prior to surgery is best treatment. Friend of ours had that done and she is doing well.
Hubby 72 cc
Resctn colon 07 stage 3/11 15 cm liver met CEA 3000+
CPT 11, 12 xelox kras wild gall blddr rem 7-12 & abltn
liver stents bi-mo gilbert lng mets , cpt-11 3-13, 2 hernia surgeries2013 & liver abltn went to heaven 10-24-13

jdc
Posts: 16
Joined: Thu Jul 25, 2013 6:42 am

Re: Your stories - Anyone with Stage 3 decided against chemo

Postby jdc » Thu Aug 22, 2013 10:16 pm

I probably don’t have a right to comment since I am not a cancer patient myself, so I hope I don’t offend anyone as I understand everyone needs to make their own personal decision of what is right for them.
However, if I was stage 3, I would choose the chemo. This is your wife’s life on the line and I would want to do eveything possible to reduce the risk of a recurrance. You don’t know what other micrometastasis may be in her system that are currently too small to be detected in scans or visually during surgery.

Choosing to do chemo does not mean committing to a contract to do the full 12 rounds, if your wife finds it is too much and doesn’t feel the benefit is worth it then she can stop at any time. As everyone here always says, people respond differently to chemo, some will have debilitating side effects and some won’t. Individuals don’t know how it will impact them until they try it. My family member is stage IV and was considering not having chemo and just enjoying life before desease progressed further, however, he decided to try Folfox and after 7 rounds he has been fortunate so far to have not experienced bad side effects and is feeling very good. Your wife may also be fortunate and not experience bad side effects but there are many medications that can help with nausea and pain if she does have problems. There are also different chemo options available and sometimes dosage levels can be reduced (eg for oxaliplatin) if side effects become troublesome. If your wife does choose chemo, you will also find a wealth of advice on this board with regards to how to deal with any issues that may arise.

I don’t mean any offence to people who may believe the claims on alternative websites that state chemo will kill you and cancer can be cured by asparagus etc, but it is just my personal opinion that I agree with John72 and would be wary of the claims on those websites as they are not scientifically proven and can cause fear and confusion when first diagnosed and researching options. Of course, a good diet can only help a persons overall health but I would think there are many people posting here on this forum that would not be here without chemo.

Best wishes to you and your wife in whatever decision is made.

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Your stories - Anyone with Stage 3 decided against chemo

Postby Bev G » Thu Aug 22, 2013 10:23 pm

healingintent wrote:I guess the concern is the chemo doing more harm than good. We're very new to all this - everything has happened so quickly. I guess the question I am trying to ask is if the cancer is all clear, what's the worst the chemo could potentially do long-term? Both surgeon and oncologist said with the discouver of 3 in 15 lymph nodes (all since removed) and staging at 3a, they talk about the chemo being "precautionary" (and are obviously strongly recommending it).


You are not "all clear". The removal of those contaminated nodes was not curative, it was diagnostic. And---skipping chemo is not like a roll of the dice, even with the odds your doc gave you (ie 50%) it's the flip of a coin! You don't really want to trust survival to that, do you? Please take the chemo.

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

lydia123
Posts: 771
Joined: Sun Jul 04, 2010 11:23 am

Re: Your stories - Anyone with Stage 3 decided against chemo

Postby lydia123 » Fri Aug 23, 2013 7:43 am

Hi There.

My husband is 3 years out from Stage III-B diagnosis. We also got the 50% stat, and that is what we considered a failing grade.

3 years later: He jogs. He runs an athletic clinic for children and never missed a year, even during chemo. He's back to being successful at work. He is back to being a full partner in child rearing. Our kid is happy. We are good. I am starting to stockpile sick leave again.

During chemo and recovery: He has an unusually difficult time with the 5-FU and oxi. That "unusual" adjective is the doctor's. It took 3 years for the fatigue to fully lift. It strained our resources (and I am out of leave, which is a problem since I have a chronic condition). It was physically grueling, involving a hospitalization. Our kid needed a bit of therapy. Hardest thing we ever did.

Yes, he has neuropathy, some bowel issues, and has aged considerably (as have I). However his life is good and the cancer has not returned.
lydia123
caregiver to husband dx stage III colon/rectal cancer 5/10
6/10 surgery
7/10: FOLFOX began -- became nausea management expert
12/10: Chemo-radiation ended, scans clean.
NED since, but some scans required follow-up


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