T3cN2a, refusing chemotherapy?

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teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: T3cN2a, refusing chemotherapy?

Postby teachpdx » Sat May 18, 2013 7:34 pm

I'm with everyone else here who says to do the chemo. As to the "crippling" side effects I think you need to assess how your body reacts to medication. I am extremely sensitive to meds and I am still having HFS six months after my last chemo. I opted not to take the Oxi because of the side effects and not good research that it helps that much with my rectal cancer. I also have lynch syndrome so my thought is they can give me neuropathy next time around (hopefully not). Even with the side effects which for me can be crippling - I have no regrets. My mother died of metastatic colon cancer when she was just 47. I will outlive both my mom and gmom who both died of cancer. Live on !!!
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

pete43lost_at_sea
Posts: 65
Joined: Tue Mar 29, 2011 6:26 am

Re: T3cN2a, refusing chemotherapy?

Postby pete43lost_at_sea » Sat May 18, 2013 7:46 pm

i was about the same story as kellie above, i would get chemo but maybe only a couple of cycles, then i would fly to germany and do a course of dendtriti cell vaccines and or removab therapy to reduce levels of circulating tumour stem cells. of course there is plenty you cn do to improve healthy.

building up a lifetime supply of platinum in your bone marrow is not a wise idea, but so few do active chelation will playing with folfox. alas.
the standard of care is so far behind the times, its sad. of course thi is just my opinion based on my experience, experiments and research.

i was a t4n1m0, recurrence 1 was mets liver, lung, peritoean. resolved with immunotherapy.

alas recurrence 2 cea 23, ctc =5.2 just started fighting with pet, infusions, full body hyperthermai, preemptive chemoembolisation, removab, braf antibody therapy, gamma delta vaccine and dentric cell vaccine with ndv.

Read my blog about immunotherapy for colorectal if your interested in these therapies. pm me if you or anyone got any questions.

the revelations of asco in a few weeks will chane the cancer world i hope, if not we can.

hugs,
pete

jenniejojjr

Re: T3cN2a, refusing chemotherapy?

Postby jenniejojjr » Sat May 18, 2013 9:09 pm

At a stage 3 I don't know why you would even consider refusing chemo. Some potential permanant side effects vs a dirt nap seems a no brainer to me. Do what your onc reccomends, and don't pay attention to those peddling alternative so-called "treatments". This is your best oppertunity to avoid recurrence, don't blow it.

Scotswoman
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Joined: Sun May 19, 2013 7:29 am
Location: Scotland, United Kingdom

Re: T3cN2a, refusing chemotherapy?

Postby Scotswoman » Sun May 19, 2013 7:43 am

Hi I have been reading this forum for a few months now and registered today to reply specifically to this post.
I am 45 and was diagnosed in January 13 with a tumour (initially thought to be early stages) surgery in feb which was then diagnosed very similar to yourself t3n2mo stage 3c 4/28 lymph nodes. I'm a little further down the line as I have started chemo already. For me this was an easy decision, I have two girls 9and 10. I want to be around as long as I possibly can for them. In scotland standard first phase chemo is xeloda (OXALIPLATIN and capecitabine pills) I can honestly say it is certainly something you can get through, if I can do it anyone can.
I agree with everyone on here that you should give yourself the best chance at life that you possibly can and have the chemo. If you can't do it for yourself then do it for the people in your life that love you and want the best for you.
If it was someone you loved I'm sure after reading all the info you would want them to go through it.
I had the chance to join a trial and only have four rounds instead of the standard eight and as much as I was tempted to do that I decided I had to have the most I could to give me the best chance.
Good luck with whatever decision you make and I hope things go well for you
Diagnosed crc Jan 13
Lar 7/2/2013
Xeloda chemo started 22/3/2013
Diagnosed stage 3c 4/28 nodes

Swede
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Joined: Fri May 17, 2013 4:40 am
Location: Sweden

Re: T3cN2a, refusing chemotherapy?

Postby Swede » Sun May 19, 2013 11:21 am

Thank you all for your kind replies. I appreciate it.

I had neither radiation nor chemotherapy before operation, since that was not considered necessary based on MRI that showed T2N0 and nothing else. I had my surgery at a first class colorectal cancer center, state of the art. The surgeons were upbeat afterwards, considering the procedure curative and locally radical. They saw no signs of spread anywhere.

So it was a shock for me when I got the pathology report. Risk of relapse 30-60%, which means I have 40-70% chance of being cured and healthy.

I think I have at least 50% chance of being cured, all cancer gone. Taking Xeloda reduces the relative risk of relapse by 25%. That means that after chemotherapy I would have 62.5% chance of being cured. 12.5% extra absolute chance of life would of course not be bad, since we live til about 95 years of age in my family (I am 45 now).

BUT, it also gives me absolute certain risk of living with the lasting side effects of chemotherapy for another 50 years. Would that be worth it, since the chance of me being cured already is 50%? What scares me is not so much the half year of chemotherapy, but the rest of my life afterwards. I have met people after taking chemotherapy, who said it was not worth it. They were shadows of their former selves, all reserves gone. Would I want that?

Also, I want more children. Would my sperm production return after chemotherapy? Maybe, maybe not. My sperm quality is OK now, I recently had it tested. But there is not much margin. After chemotherapy it might not be sufficient for fertility. I have frozen semen, but my sperm seem to be bad freezers. Not many of them survive thawing.
So, is 12.5% extra chance of life worth the risk of infertility?
LAR 2013-04-29. 45 yo RC T3cN2a 4/38 nodes. Vascular invasion. Mucinous moderately differentiated adenocarcinoma 10-13 cm from anus
Refused rad&oxi. 4 rounds of xeloda
May 2014 CT, MRI and PET suspicious peritoneal mets. Surgery June 2014 only benign granuloma. NED
2015-04-10 clean MRI abdomen/liver/pelvis, clean pulm x-ray.
2016-05-13 clean MRI abdomen/liver/pelvis, clean pulm x-ray, clean colonoscopy
Cured.

Swede
Posts: 38
Joined: Fri May 17, 2013 4:40 am
Location: Sweden

Re: T3cN2a, refusing chemotherapy?

Postby Swede » Sun May 19, 2013 11:36 am

Or to put it bluntly, these are the alternatives if I take chemotherapy:

1. 50% risk that it will hurt me. A lot. For the next 50 years. Very Bad.

2. 37.5% risk that it won't do much difference, except make my life miserable for the next 6 months. Bad.

3. 12.5% chance that it will save me 50 extra years of life. Good.


Why is it so obvious to everybody, except me, that I should only consider the 12.5% chance that chemotherapy would help me to get a longer life? When in fact there is a 87.5% chance that chemotherapy will only hurt me, and nothing good will come out of it?
LAR 2013-04-29. 45 yo RC T3cN2a 4/38 nodes. Vascular invasion. Mucinous moderately differentiated adenocarcinoma 10-13 cm from anus
Refused rad&oxi. 4 rounds of xeloda
May 2014 CT, MRI and PET suspicious peritoneal mets. Surgery June 2014 only benign granuloma. NED
2015-04-10 clean MRI abdomen/liver/pelvis, clean pulm x-ray.
2016-05-13 clean MRI abdomen/liver/pelvis, clean pulm x-ray, clean colonoscopy
Cured.

susanh
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Joined: Mon Oct 11, 2010 6:50 am
Location: Washington, D.C. area

Re: T3cN2a, refusing chemotherapy?

Postby susanh » Sun May 19, 2013 12:11 pm

You are Stage III. The accepted standard of care is chemo. At your young age, you try it. It's not even debatable. Dose reductions are common and you can even stop treatment if it becomes too much. Also, I don't know where you are getting the idea that there is a 50% risk that chemo will permanently damage you to an extent that is unacceptable for living. Cancer kills, chemo does not. I'll agree with some of the comments that colon cancer chemo is not that bad. Everything I did before chemo, I do now. Everyone is different, but I'd rather live with some neuropathy then die because I made a dumb, shortsighted decision. Why wouldn't you even try the chemo? A few cycles are not likely to result in noticeable permanent damage and then you can gauge how your body reacts.
SusanH
Dx on 7/19/2010 at 42 years old, Stage IV
Colon and Liver resection 8/11/2010, clean scan 9/27/2010
FOLFOX-6/Avastin started 9/28/2010, finished 12 cycles 3/2011
Vaccine Trial 5/2011- completed 8/2011
Clean scans since, last scan 2021, considered cured

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CRguy
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Joined: Sun Feb 10, 2008 6:00 pm

Re: T3cN2a, refusing chemotherapy?

Postby CRguy » Sun May 19, 2013 12:19 pm

Swede wrote:Why is it so obvious to everybody, except me, that I should only consider the 12.5% chance that chemotherapy would help me to get a longer life? When in fact there is a 87.5% chance that chemotherapy will only hurt me, and nothing good will come out of it?

Possibly because we have all done it and know the actuality and reality of being alive for a fact.... instead of driving ourselves crazy dealing with the percentages and pondering the possibles and probables.

What IS ... not what IFs, my friend... but only you can make that choice for yourself.
I already have. I've had more lingering changes to my life because of surgery than chemo. My situation is different from yours in that I had chemoradiation before surgery and chemo after ( both with Xeloda ) and had NO lingering side effects of any kind from that chemo. After a recurrence, I now have mild to moderate persistent, non-painful late onset oxaliplatin induced neuropathy which does not impact my day to day life or work. I would do it all again in my own situation. What IS, not what IF.

Best wishes on finding a solution which resonates with who you are, and where you need to go with your own life.
Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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tchan8888
Posts: 208
Joined: Mon Mar 25, 2013 8:41 pm
Location: San Francisco Bay Area

Re: T3cN2a, refusing chemotherapy?

Postby tchan8888 » Sun May 19, 2013 12:31 pm

Swede,

Just my two cents. Since you are into percentages and statistics, would also consider the 5 year survival rate for Stage III's. Based on these rates (in general and knowing that all cases are unique) to me, the answer is clear. Would do the chemo.

T
Tom, 49 now
12/12 Right Hemicolectomy 2X (29 days in hospital)
12/12 Stage IV: multiple distant LN; no organs
20X: FOLFIRI (stopped working)
8X: 5FU
8X: FOLFOX and Avastin
2016: Clinical trial pembrozilumab MSI high

Swede
Posts: 38
Joined: Fri May 17, 2013 4:40 am
Location: Sweden

Re: T3cN2a, refusing chemotherapy?

Postby Swede » Sun May 19, 2013 12:38 pm

tchan8888 wrote:
would also consider the 5 year survival rate for Stage III's.



I did not understand that, can you elaborate?

I expect my 5 year survival to be >60% without chemotherapy now. You think I am wrong?
LAR 2013-04-29. 45 yo RC T3cN2a 4/38 nodes. Vascular invasion. Mucinous moderately differentiated adenocarcinoma 10-13 cm from anus
Refused rad&oxi. 4 rounds of xeloda
May 2014 CT, MRI and PET suspicious peritoneal mets. Surgery June 2014 only benign granuloma. NED
2015-04-10 clean MRI abdomen/liver/pelvis, clean pulm x-ray.
2016-05-13 clean MRI abdomen/liver/pelvis, clean pulm x-ray, clean colonoscopy
Cured.

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tchan8888
Posts: 208
Joined: Mon Mar 25, 2013 8:41 pm
Location: San Francisco Bay Area

Re: T3cN2a, refusing chemotherapy?

Postby tchan8888 » Sun May 19, 2013 12:49 pm

Swede,

You expect this percentage from what source? In the US, the survival rates are based on receiving treatment. I have not found any statistics about survival rate of people who choose not to receive treatment. Would assume those are lower. Nevertheless, you are in control of your own destiny. I only gave my two cents. Good luck on your choice.

T
Tom, 49 now
12/12 Right Hemicolectomy 2X (29 days in hospital)
12/12 Stage IV: multiple distant LN; no organs
20X: FOLFIRI (stopped working)
8X: 5FU
8X: FOLFOX and Avastin
2016: Clinical trial pembrozilumab MSI high

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: T3cN2a, refusing chemotherapy?

Postby skypup » Sun May 19, 2013 12:50 pm

Swede wrote:Why is it so obvious to everybody, except me, that I should only consider the 12.5% chance that chemotherapy would help me to get a longer life? When in fact there is a 87.5% chance that chemotherapy will only hurt me, and nothing good will come out of it?

No one wants to argue and this is a group that will support your decision. Just sharing experience. I'm looking forward to hearing what you decide and think you are wise to question everything.

Swede
Posts: 38
Joined: Fri May 17, 2013 4:40 am
Location: Sweden

Re: T3cN2a, refusing chemotherapy?

Postby Swede » Sun May 19, 2013 1:09 pm

tchan8888 wrote:
You expect this percentage from what source?

T


http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0040842/
http://www.ncbi.nlm.nih.gov/pubmed/18083404

I am basing my reasoning on the guidelines from Socialstyrelsen (Swedish equivalent of FDA, or maybe the NHS in UK).

http://www.socialstyrelsen.se/riktlinje ... cancer.pdf
A very good and up to date review on all research and lots of statistics. Unfortunately all in Swedish. There is a full list of references on page 219 in the document.
LAR 2013-04-29. 45 yo RC T3cN2a 4/38 nodes. Vascular invasion. Mucinous moderately differentiated adenocarcinoma 10-13 cm from anus
Refused rad&oxi. 4 rounds of xeloda
May 2014 CT, MRI and PET suspicious peritoneal mets. Surgery June 2014 only benign granuloma. NED
2015-04-10 clean MRI abdomen/liver/pelvis, clean pulm x-ray.
2016-05-13 clean MRI abdomen/liver/pelvis, clean pulm x-ray, clean colonoscopy
Cured.

jenniejojjr

Re: T3cN2a, refusing chemotherapy?

Postby jenniejojjr » Sun May 19, 2013 1:31 pm

You appear to be in denial re the gravity of your situation. Stats will mean nothing to you if you are the one that has a recurrance. I don't know why you think everyone on chemo will have "crippling" "lifelong" side effects, that's just not true. It is entirely possible that you have tiny seeds of cancer now, undetected by tests that will grow over time and make themselves known. Not adequatly treating your cancer will have a permanant side effect!

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Bev G
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Re: T3cN2a, refusing chemotherapy?

Postby Bev G » Sun May 19, 2013 2:24 pm

Swede wrote:
tchan8888 wrote:
You expect this percentage from what source?

T


http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0040842/
http://www.ncbi.nlm.nih.gov/pubmed/18083404

I am basing my reasoning on the guidelines from Socialstyrelsen (Swedish equivalent of FDA, or maybe the NHS in UK).

http://www.socialstyrelsen.se/riktlinje ... cancer.pdf
A very good and up to date review on all research and lots of statistics. Unfortunately all in Swedish. There is a full list of references on page 219 in the document.


By my reading the first paper you linked showed a statistically significant improvement in outcome in the chemo group. The second paper you linked it totally irrelevant because the study group consisted of stage II (no nodes) patients. I wish I could read Swedish, but I can't. It is incredibly hard for me to believe that there are enough stage IIIs who have NOT received chemo to perform an adequate outcome study.

I mean absolutely no disrespect to you at all, but it seems you came here looking for thoughts/advice, and you've gotten lots of it. I think I've read all the messages to you, and it seems that all have suggested that you have chemo, or at least give it a try and stop if you find it intolerable. It almost seems that your demeanor has become a but hostile. In the whole scheme of things, we're all just trying to survive our own cancer, and taking our time to give you the best advice we can. You can, of course, take it or leave it. But please do...just take it or leave.

Best wishes to you. I hope whatever you choose will work out for you in the end.

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


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