Your stories - Anyone with Stage 3 decided against chemo?

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-Sophie-
Posts: 67
Joined: Mon Apr 08, 2013 12:47 am

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

Postby -Sophie- » Fri Aug 23, 2013 8:42 am

My perspective on it. I was diagnosed 3b and had pre operative chemo and radiation to shrink the tumour. This was completely effective and there was no tumour, no cancer cells and only reactive changes in the lymph nodes.

Stage 3 protocol is post op chemo. I admit I didn't want to do it and it was tough as in my head the cancer was gone so why do more. I made the decision to do it. It was tough and I was on the friendly chemo (5FU only) and we had to tweak the dose and delivery but I did it.

Two things to consider how will you feel if the cancer comes back and you haven't do chemo or at least tried it and you can change or stop chemo if you don't cope with it.
29 yo f w daughters 5 & 2
Dx nov 2012- 3c (T4N2M0)
Chemo/rad Dec 2012 - Jan 2013
16 march 2013 LAR + rad hyst, temp ileostomy
Patho no viable cancer found, 0/10 lymph nodes
April - June 2013 Chemo 5fu, 4 rounds
July 31st 2013 reversal and port removal

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

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

Postby Cb75 » Fri Aug 23, 2013 8:43 am

What's worse, a bit of nausea, constipation/diarreah, some neuropathy or recurrance? To me it's simple. You get one shot. Do everything you can...
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

sbrainbolt
Posts: 146
Joined: Mon Oct 08, 2012 1:01 pm
Location: Houston, TX

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

Postby sbrainbolt » Fri Aug 23, 2013 8:46 am

I am stage 3A. I did the chemo because I don't want to wake up in the future with a reoccurance and have to say to myself, "If only I had done the chemo!"

I am coming up on a year and a half since diagnosis and so far so good. I tolerated the chemo OK. Felt nauseated, tired and crappy a few days after having the pump disconnected. Started feeling pretty good a few days before having to do it again. I worked full time through it all taking off a day here and there when needed. No one even knew I was sick unless I told them. I didn't loose weight and "look deathly ill" in fact most of the time when I would run into people who had heard about my situation would say, "Oh my God, you look so GOOD!"

Cancer is not for sissies. We are all incredibly strong people here whether we are the patient or the caregiver. Were we that way from the beginning or did going through all this disease has to offer make us that way? Huh, chicken and egg question. My point is you and your wife have more strength that you know you are capable of mustering.

Get the chemo, please.
DX 1/12 50 yrs
LAR 2/12 CR 3A T1N1M0
chemo 3/12- 9/10/12 FOLFOX, issues with platelet counts every 4th treatment
CEA normal
CT 3/15 stable lung nods since 1/2012 NED.
SBO kinked small bowel 10/13 - LAPRO surgery to fix
yrly scans now
09/25/2017 - Graduated to the Survivorship Clinic at MDA! Cured!!!

kims
Posts: 228
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Facebook Username: ksegers

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

Postby kims » Fri Aug 23, 2013 9:05 am

I was a stage IIIB and I wouldn't have even considered not doing chemo with the statistics that are out there. I still ended up with a recurrence in my lung, but it was small and could be resected. The doctor believes it was there when I was diagnosed and that the chemo kept it from growing. I had FOLFOX which was eventually changed to just Xeloda and I worked through all of my treatments. I would not gamble.
47 YOA
11/08 stage 2 breast cancer
completed chemo 6/09
diagnosed 1/11 stage 3B CC
4 rounds FOLFOX followed by 6 rounds Xeloda
completed 9/11
Pet scan 10/11 - NED
CT Scan 1/12, 4/12; 11/12 - NED
7/13 - recurrence - 1cm lesion left lung; VATS 7/13

hkbsmile
Posts: 7
Joined: Tue Aug 13, 2013 4:07 pm

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

Postby hkbsmile » Fri Aug 23, 2013 9:49 am

I'm not stage 3, but even at stage II I'm beginning chemo again on Monday. Like Sophie, in my head I think the cancer is gone. I have a 14 yo & 11 yo that I want to stay around for & I have Lynch syndrome (putting me at a higher risk for certain cancers) so I decided chemo was the best thing for me.
It is your choice, like others have said if you decide to take the chemo road it doesn't mean you have to commit to all treatments.
Last edited by hkbsmile on Tue Sep 17, 2013 2:54 pm, edited 1 time in total.
Necrotizing faciitis & Dx rectal cancer 2-2013/38 yo
Surgery to close leg wound from NF 3-2013
6 weeks chemo/radiation April-May 2013
APR surgery, permanent colostomy 7-2013
Stage lIb T2N0M0, Lynch syndrome PMS2
Chemo starts 8/26/13

Ontario Guy
Posts: 278
Joined: Fri Aug 03, 2012 7:55 am

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

Postby Ontario Guy » Fri Aug 23, 2013 10:17 am

I did chemo, pre- and post-op. Chemo is nasty. 6 months out, and I still have a few lingering side effects. Do it anyway.

Good luck,

OG

nkoske
Posts: 442
Joined: Fri Feb 22, 2013 2:00 pm
Location: California

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

Postby nkoske » Fri Aug 23, 2013 10:32 am

I did Chemo, everyone is different but my body tolerated it pretty well. Dealing with a little neuropathy now, but manageable. For me even if it was a 1% difference in survival I'd do it. Why, because stats are just numbers, everyone case is different. Lets say it's a 50% chance you're cured. That means 50 out of 100 make it, but there is no way to know which population you're in. If 51% are cured 51 people make it. If you're that one person that flipped to the 'make it side', that's a big deal. I feel sometimes people place far to much weight on the odds even if there's a 99% chance you'll make it if you're the 1% life sucks for you. Odds are only good for looking at populations, not individual cases.

Did chemo do some damage no doubt, could it have shortened my life...quite possibly. But cancer will kill you in months, so if chemo took a couple years at the end of my life assuming I live past this cancer thing, I'll take that any day.
Nick, DX @ age 34, IIIB Rectal Cancer 10/2012
ChemoRad IMRT 11/2012
Laparoscopic LAR 1/2013 (No Ileo)
Post Surgery Path IIIB (2/15 LN)
Chemo 2/2013 (XelOx)
Currently NED, Graduated from Med Onc 10/2017

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kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

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

Postby kellywin » Fri Aug 23, 2013 11:09 am

nkoske wrote:I did Chemo, everyone is different but my body tolerated it pretty well. Dealing with a little neuropathy now, but manageable. For me even if it was a 1% difference in survival I'd do it. Why, because stats are just numbers, everyone case is different. Lets say it's a 50% chance you're cured. That means 50 out of 100 make it, but there is no way to know which population you're in. If 51% are cured 51 people make it. If you're that one person that flipped to the 'make it side', that's a big deal. I feel sometimes people place far to much weight on the odds even if there's a 99% chance you'll make it if you're the 1% life sucks for you. Odds are only good for looking at populations, not individual cases.

Did chemo do some damage no doubt, could it have shortened my life...quite possibly. But cancer will kill you in months, so if chemo took a couple years at the end of my life assuming I live past this cancer thing, I'll take that any day.


This is exactly the way I looked at it. In the beginning, before surgery, I would have loved for any of my doctors to tell me chemo wasn't necessary, because who the hell wants to do it. But when it comes down to it there really isn't a choice. My doctor also said with surgery alone, probably a 50% chance of it coming back, to me that's not a great odd to begin with. But stats don't really matter, it's what happens to you, that 50%, 30%, whatever, means nothing if your in the group that it comes back, you never know. Does chemo suck, yes, but it sucks worse to die. If there's something that can help increase my odds at this not coming back, I'm going to take it. I think the worst side effects I have are from radiation and surgery, not from the chemo. The chemo sucks while you're on it no doubt (still fresh in my mind, just finshed my last round of Xeloda & got to skip the last Oxi infusion), and I think I've got some neuropothy starting to creep on, but none of it is keeping me from living my life. Good luck to you, but I'd take the chemo.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

helen098
Posts: 2005
Joined: Sun Jul 01, 2007 2:07 pm
Location: Forest Hills New York

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

Postby helen098 » Fri Aug 23, 2013 2:29 pm

Before they got the pathology report…the surgeon was happily telling me I would not need any additional treatment, one lymph node escaping later the onc was giving me a choice of 3 different chemo regiments. At stage 3 I never even thought to not do chemo or was given the option
Yes it was hard (had diarrhea, cold sensitively and eventfully neuropathy (till today) ) but I think it was worth it, if I could go back to that day in june 2006 I would still do the chemo
My onc said with chemo I had a 85% chance of it not returning….
7 years post surgery date I can say my last colonoscopy was clean and my last cat scan (last oct) was also clear…I don’t know what tomorrow will bring but I feel the chemo was worth it

As others have said it’s a hard word to hear (chemo and cancer), yes it’s scary but I can promise you no matter how you handle the treatment it’s not as bad as you are thinking it will be right now

Hang in there
stage 3A surgery 6/6/6 finished chemo jan 07
11 5FU/12 Levcouorin/10oxaliplatim
port removed jun 07
anal fistula surgery oct 05 may 07 feb 08 sep 08 jun 09

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

Postby Kathryn in MN » Fri Aug 23, 2013 5:23 pm

This is a very personal decision. Yes, most opt to do chemo if they are a stage 3. I do know one person who chose surgery only. Her sister had died of stage IV disease and after watching what she went through with treatments, this person chose no chemo. She made changes in her diet and exercise and lives as healthy as she can (she got deep into juicing and other things too). She is more than 5 years out and cancer free. I know others who chose chemo and have the same results. I know others who chose chemo and had a recurrence. There is no definitive answer on what will happen to you if you do or do not choose chemo. The stats do show that your odds are better with it than without, but as of now there is no way to identify who will be helped by chemo and who will not. It is a crap shoot.

For me personally, I have a love/hate relationship with chemo. I would not still be alive today without it. It keeps my cancer under control. But I have a lot of really tough problems from chemo and do not tolerate it well. If I were over age 70, I would not do chemo. If I had a lot of bad medical issues to contend with, I probably would not do chemo. But if otherwise healthy and young, I would do it.

You have to ask yourself the BIG question, and then be willing to live with the choice. "If I do not do chemo and the cancer returns, will I be kicking myself, or will I be ok with it?" It all boils down to that...
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

justin case
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Location: Katy, Texas

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

Postby justin case » Fri Aug 23, 2013 6:28 pm

My first thoughts of dealing with Cancer were, I can just cut it out, and be done with it.(Why didn't the GI take it out when he did the colonoscopy anyway, damn him) OK, so I was sent to the Oncologist, and he prescribed a port, with the surgeon, for the chemotherapy. ( Oh great, I'll have to be in the hospital and be stuck in a bed for weeks on end, I'll probably lose my job, and my wife will dessert me) I had a meeting with the oncology nurse,(receptionist said, Odie will be with you in a minute). Odie handed me papers to review which described the side effects, and cautions of doing chemotherapy, and told me to report on Monday, to get my treatments. I, of course was scared beyond belief of how sick I would get, should I bring my wife, would I have to be admitted to the hospital, should I eat, just an assortment of random thoughts, and they all scared me beyond belief. Well Odie, ( who by the way has a very unusual name, has trained many of the oncology nurses in Houston, during her tenure at MD Anderson, and future endeavors) hooked up my port, gave me my chemo, told me not to drink any cold things, as it may give me breathing problems, and report back tomorrow, for more of the same. I was also sent home with this battery operated pump, that was to be my companion for a couple of days. ( Surely they were using Eveready batteries, because after knowing the insurance company just got charged $1,000.00, they could afford the best batteries, NOT) Anyway, I could go on and on. It was a Houston summer of daily 100 degree days totaling almost 45 in a row. As I hate being told what to do, I turned on the air conditioning in the car to full blast, pulled out the coke from my ice chest, and drove the 35 miles home, as if nothing had happened. Well, if the truth be told, I just happen to be one of those people, that had no problem with cold drinks, before during or after Oxiloplatin. The whole point of this dissertation, is to let you know Chemotherapy can be a life saver, and side effects vary from person to person. Because you have Chemotherapy, radiation, or any other treatments, you'll find surgery still needs to be done. If you want to get rid of cancer, there are no shortcuts, believe me I have already tried to figure out a better way, than what the doctors already told me was going to happen. Ha, after all, I could never get Cancer anyway :roll:
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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mstults
Posts: 1327
Joined: Fri Nov 30, 2012 11:23 am

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

Postby mstults » Sat Aug 24, 2013 1:18 pm

It's not a walk in the park. It is cancer after all. My opinion is that chemo would never do more harm than allowing the cancer to return. The regular course of folfox has been 12 rounds. There is some discussion going on that 8 may be as effective. I'm stage 4. I got 17 rounds. The oxaliplatin is nasty but I don't want regrets. And I feel that any doctor telling you chemo for stage 3 is insurance is on the verge of malpractice. Is this an oncologist or surgeon. I'm seeing more surgeons prescribing chemo pills as follow up. Letting a surgeon treat cancer is like letting a gas station attendant rebuild your engine. I understand the doctor recommends chemo. But you are not in the situation for insurance. With lymph node involvement there are rouge cancer cells in your lymph and blood systems. Please get the chemo
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

ripley86
Posts: 89
Joined: Tue Jul 30, 2013 9:22 pm

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

Postby ripley86 » Sat Aug 24, 2013 3:15 pm

My take is it would be a mistake to not start the chemo, I was listed as a stage III even tho there were 6/33 lymph nodes positive. I had to go to the ER for abdomal pain and during the CT scan, they found a shadow on my liver and 2 very small nodules on my left lung. Happily I had already started my chemo treatment and the nodules are shrinking and everything looks good so I am going to continue the chemo with possible surgery at the end. I plan to do whatever it takes to beat this thing. Fortunatly I am tolerating the chemo well.
Female, 62 yo
DX Sept 2012
Xeloda with rad 28 treat
Surgery, resection 4/13
6/33 lymph nodes +
Shadow on liver found in ER 6/13
Folfox with Avastin 6/13
2 nodules in left lung
(4mm and 2mm)
Nodule rt lung 3mm to 8 mm
Folfiri started 9/14
ER due to clot on lung 2/15
Start Lovenox
Folfiri stopped 9/15
Started trial 12/15
Trial end 2/16
Started trial Stivarga 2/16

Joy
Posts: 460
Joined: Wed Apr 12, 2006 6:33 pm
Location: Ontario, Canada

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

Postby Joy » Sat Aug 24, 2013 4:02 pm

Chemo is a 2 edged sword.

I continue to suffer from neuropathy, I have kidney damage, I have Anemia caused by bone marrow damage,
I was subsequently diagnosed with CLL.

Do I blame Chemo for all the damage...YES!!
Would I do it again YES!!

I did what I had to do and I have survived
to tell the story :D

I fully believe that chemo saved my life.
Joy
Stage III rectal cancer 2 nodes out of 19
LAR January 4th 2006
2 rounds of FOLFOX
28 continuous radiation with continuous 5FU
6 rounds of FOLFOX
NED


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