Stage IIA: Chemo or not?

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rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: Stage IIA: Chemo or not?

Postby rockhound » Wed Dec 20, 2017 4:04 pm

sandkeeper wrote:
rockhound wrote:This is the strategy I/we took- basically if I would have started having major issues with the chemo, I would have just stopped it cold. Originally we were thinking 8 cycles, but after the IDEA trial data came out this summer (about a week before I started), both oncologists, one at a major cancer center and one local, were fine with shooting for 6 cycles of Folfox. This was after chemoradiation prior to surgery (rectal cancer; took xeloda pills). I'm also MSI-High, so the effectiveness of the 5-fu was likely really low; the oxy was the main reason to do the chemo since it's an immune system modulator and could have some positive effects. If I started having issues with it, we would have just stopped since the 5-fu does not do anything with MSI-High and for the other reasons I mentioned above. I ended up doing all 6 and not having any issues with chemobrain, heart stuff, etc.- neuropathy in my feet (pins and needles tingles) and a few fingertips set in pretty good about a month afterward and over the last month or so I've also developed tinnitus, which I suspect is related to the chemo. Overall even though I had low risk factors all around, I figured why not- did not want to look back and wish I had done it if a recurrence occurred.

Find out whether you are MSS or MSI-H; if high, doing the Xeloda (5-fu) is probably not going to be useful since MSI-H tumors don't respond to it alone (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4901118/)


That's interesting that you still had chemo despite being MSI-H. I am MSS... my pathology was delayed coming back while they tested for it, as they would not even have referred me to oncology if I was MSI-H. Although obviously rectal cancer may be quite different.

Tinnitus is one concern since I do have that mildly already and don't want it to get worse, but I wonder if that might be the oxy? It's not listed on the side effects they gave me so I'm going to try and not worry about that or let it impact my decision.


My oncologist talked to others about Lynch, my situation, etc. at the ASCO meeting where the 3 vs 6 mo. study was presented and they all agreed that Folfox was the way to go, mostly because I still would benefit from the oxaliplatin (4%? 2%? more reduction; no way to really tell) and it does work better in conjunction with 5FU. His take is that in probably 5 yrs (or even less perhaps) everyone that is MSI-H would be treated with immunotherapy as a first-line. Right now there is just not enough data to justify that, so they are being conservative and going with the U.S. standard of care. I don't know if the tinnitus was caused by the chemo, but I never had it before or during treatment, but it kind of popped up over the last month. I've read that oxy can cause it occasionally, but I also have listed to lots and lots of music via earphones and am getting older!

My brain felt cloudier on the xeloda than the folfox and I had minor foot-hand, but I was way more tired and felt crappier on Folfox, esp. after I was unhooked from the pump. When that happened, It took a good 3-5 days to feel "normal" again and Sat after friday unhook day was always a waste. I never was nauseous, never had foot-hand issues, did have cold sensitivity, my blood counts all stayed normal, and walked a lot. Exercised fine through the xeloda also.
45 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
5/18 - CT, NED
11/18 - CT, NED
5/19 - CT, NED..moving to yearly CT scans
5/20 - CT, NED
5/21 - CT, NED (4 yr. scan)

Thetoad
Posts: 165
Joined: Mon Nov 23, 2015 2:46 am
Location: New Zealand

Re: Stage IIA: Chemo or not?

Postby Thetoad » Thu Dec 21, 2017 12:10 am

All I can write is my experience. I wasn't offered chemo even though I had two risk factors, a blockage and underlying perforation well away from the tumour. I'm now four and a bit years post surgery with a good colonoscopy after one year, a clear CT scan after 18 months and consistently normal CEA blood tests. I'm nervously waiting for another colonoscopy early next year, but I get nervous about everything! So, best of luck with whatever you decide and hope you all have a HAPPY CHRISTMAS. :)
Emergency extended rt hemi November 2013.
Complete blockage, small perforation.
Stage 2a.
T3N0M0
22 Lymph nodes clear.
No bag.

Yearly appts appts and 6 monthly CEA tests.
Incisional hernia repair, mesh Nov. 2014.
Cellulitus
CEA 1.4 on 28/7/17
27/5/17. Gallbladder removed, open.
Good consultation Feb. 2017
CEA 1.7 on 16/11/17 colonoscopy ok Jan. 2018 :)
Nurse pleased, March 2018. CEA 1.8. One more CEA test and hopefully last appt in November, 2018.
Prostate cancer, Gleason 7 (3+4) Sept. '18.

menreeq
Posts: 70
Joined: Fri Jun 30, 2017 10:26 am

Re: Stage IIA: Chemo or not?

Postby menreeq » Fri Dec 22, 2017 2:20 am

Hi --
I am also Stage IIA with no high risk features. I was given the same options. I asked three oncologists. My Onc recommended no chemo. Got a second opinion with a highly regarded Onc at academic center -- he said he previously would have recommended none but would be okay with Xeloda. After data on Stage III and 3 months chemo, he recommended 3 months Xeloda for me, understanding that this is a different situation. The reasoning is that the side effect profile for Xeloda for 3 months is so benign that it might be worth doing it for the 3-4% cure benefit. I curbsided a third Onc who said it was up to me -- was I the kind of person who would regret doing the chemo if I got bad side effects or the kind that would regret not doing it if I had a recurrence. I am the latter so I opted for Xeloda. My Onc agreed and said to do it for 6 months unless I can't tolerate it.

I'm on cycle 7 of 8. I have hand foot syndrome, moderate in degree, and I am working. I have young kids. I wanna do everything I can to achieve cure. Even single digits are worth it to me at this point.

You can see my old posts where I ask about side effects and the lovely people here have chimed in. It helped me make decisions about work schedule and managing side effects.

Good luck!
Stage IIA rectosigmoid CC (T3N0M0)
Dx 6/5/17 @age 41ls
Workup: c-scope, EUS, rectal MRI, CT C/A/P
AdenoCA 5.5cm, WHO Grade 2, 0/22 LN, no distant mets
CEA 1.9 (6/5/17), 0.8 (2/28/18), 1.0 (9/17/18), 1.1 (4/16/19), 1.0 (9/24/19), 1.7 (7/8/20)
No lymphovasc/perineural invasion, clear margins
MSI intact, OncotypeDx RS 7
Lap sig colectomy 6/23/17, no ileo/colostomy
Genetics neg for mutations, 4 VUS
Xeloda monotherapy 8/13/17-1/22/18
PET/CT 3/21/18 NED
CT C/A/P 9/17/18 NED, 3/8/19 NED, 9/19/19 NED, 5/13/20 NED

User avatar
henry123
Posts: 218
Joined: Sun Oct 08, 2017 3:25 am

Re: Stage IIA: Chemo or not?

Postby henry123 » Fri Dec 22, 2017 4:11 am

rockhound wrote:
My oncologist talked to others about Lynch, my situation, etc. at the ASCO meeting where the 3 vs 6 mo. study was presented and they all agreed that Folfox was the way to go, mostly because I still would benefit from the oxaliplatin (4%? 2%? more reduction; no way to really tell) and it does work better in conjunction with 5FU. His take is that in probably 5 yrs (or even less perhaps) everyone that is MSI-H would be treated with immunotherapy as a first-line. Right now there is just not enough data to justify that, so they are being conservative and going with the U.S. standard of care. I don't know if the tinnitus was caused by the chemo, but I never had it before or during treatment, but it kind of popped up over the last month. I've read that oxy can cause it occasionally, but I also have listed to lots and lots of music via earphones and am getting older!

My oncologist is actually going to propose immunotherapy as first line of treatment for msi-high cases.
He is preparing proposal for same.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
1/20 NED Opdivo stop
8/23 1.0 All ok

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Stage IIA: Chemo or not?

Postby DarknessEmbraced » Sat Dec 23, 2017 10:29 am

I was diagnosed as stage 2a in 2014. The oncologist told me that chemo would only give me an extra 3% to 5% reduction in recurrence risk. He said that the small benefit outweighed the risk. I followed his suggestion and didn't have chemo. I have been in remission since surgery. I had no negative prognostic factors. The oncologist told me my chance of recurrence is 10% to 15%.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Bargibargi
Posts: 1
Joined: Sat Dec 23, 2017 2:39 pm

Re: Stage IIA: Chemo or not?

Postby Bargibargi » Sat Dec 23, 2017 3:19 pm

sandkeeper wrote:
love3 wrote:I'm curious as to why your oncologist did not give you the option of 3 months of chemotherapy. It's my understanding this has become the new protocol for Stage III colon cancer so I don't know why this wouldn't be true for Stage II.


I am in the UK, so it's possible it hasn't been adopted here yet. I did wonder this myself after finding a few references to 3-month chemo cycles during my (limited) research, but they all seemed to apply to IV 5-FU so I didn't question it.

I suppose if that is the case then I could always start the course as others have suggested, and based on the side effects, re-evaluate at 3 months and know there's the possibility of some benefit.


Asked my oncologist about this and as the trial wasn't with Capecitabine (Xeloda) they have to stick with 6 months.

B in Canada
Posts: 24
Joined: Sun Dec 07, 2014 12:29 pm

Re: Stage IIA: Chemo or not?

Postby B in Canada » Tue Dec 26, 2017 5:16 pm

I had the same difficulty in deciding re:Xeloda for my Colon 2A sigmoid post-resection. My Onc said it would give me the few % which would be the same % as an exercise regimen. I thought I could do both-which for me was not possible. I decided to take Xeloda but stopped after 2 cycles of it- I was scheduled for 8.

I had many side-effects- some minor/tolerable and some controllable with over-the-counter meds, but the worst effect was very painful spasms that my onc said were bowel spasms. Xeloda also caused an auto-immune response which affected all my joints like an arthritis. I still have joint problems especially in my hands.

I felt if I could take Xeloda and the side-effects got too bad, I could stop...which I did.

If you do take it: drink lots of water, use a good cream on hands&feet before hand-foot starts and watch consumption of folic acid fortified foods. I ended up eating bread/crackers/pasta quite a bit when I was feeling a bit nauseous or did not feel like cooking: here in Canada those products are fortified with folic acid. I have read about high levels of folic acid interfering with 5FU&Xeloda. Don't know if that had anything to do with my specific side-effects but it might be something to check with your Onc.

Good luck with your decision and if you take it, I hope you do not have serious side-effects.
Positive FIT test Spring 2013(intermittent blood=of course thought it was hemorrhoid) & finally got appt with colo-rectal surgeon Dec.2013 & then colonoscopy Aug. 2014
Sigmoid resection (laparoscopic) Nov. 2014 T3N0M0=colon 2A Female 53 yrs. old
Choice of to take Capecitabine(Xeloda) or not: did 2 rounds and then had to quit due to many side-effects(still have auto-immune/drug-induced arthritis problems)
Colonoscopy Fall 2015(few polyps), Jan 2017(couple polyps); all scans/CEA/monitoring good :D

Leeloo
Posts: 58
Joined: Sat Oct 04, 2014 5:02 pm
Location: Glasgow, Scotland, UK

Re: Stage IIA: Chemo or not?

Postby Leeloo » Wed Dec 27, 2017 6:43 pm

Hi B,

I took part in the Scott trial comparing 3 months chemo with 6, as a stage IIa. I’m now 4 years cancer free. However everyone’s experience is personal, there is no right or wrong, only the decision you choose to live with!

Here are the published results.

The trial did include the combination of oxaliplatin and capecitabine (known as XELOX here in the UK).

http://www.ascopost.com/News/55708

http://ascopubs.org/doi/abs/10.1200/JCO ... suppl.3502

Whatever you decide, I wish you well.

Leeloo
(R) hemicolectomy 13/08/13
Stage IIB T4N0(0/6)M0
Xelox x 4 (Scot trial)
NED

tommygadget
Posts: 1
Joined: Tue Jan 02, 2018 9:33 am

Re: Stage IIA: Chemo or not?

Postby tommygadget » Tue Jan 02, 2018 9:50 am

I'll add my experience with my cancer. I was bleeding every time I went to the bathroom. I was already in the hospital for a massive hernia. After I went home, it got much worse. My wife insisted that something was seriously wrong with me and insisted that the surgeon order a colonoscopy immediately. He did and they found a tumor. Stage 2A colorectal cancer with aggressive features. Since I was already in the hospital, they did the surgery. Biopsied 14 lymph nodes, all clear. Oncologist recommended xeloda and radiation, 3 weeks. After that, they recommended xeloda and oxyplantin. My oncologist was comfortable with a 4 month regimen, 5 rounds. 4000mg xeloda pills 8x400mg, split morning and evening doses. Two weeks on, one off.

I decided to do the chemo. My fingerprints basically disappeared, so did my energy levels. I had to stay away from fatty foods and eat small meals or just fast. Otherwise, I was treated to horrible powerful cramps gas and watery stools, sometimes in the bathroom for over an hour. My hands still hurt and fingertips still swollen. Energy and bowels getting better.

Don't know if anything is permanent yet, but I'm ok with my decision to have the chemo.

Good luck to you, I wish you all the best.

TommyG.

Lorna
Posts: 1
Joined: Mon Jan 01, 2018 8:08 pm
Facebook Username: Lorna

Re: Stage IIA: Chemo or not?

Postby Lorna » Tue Jan 02, 2018 4:29 pm

I think chemo helps a very small percentage of people. For others I believe it hurts far more than it helps. I had breast cancer in 1989 and refused chemo. Then in 2012 had rectal cancer. I did radiation which I wish I never had as I ended up with radiation proctitis which had horrible side effects fir me. Again I refused chemo. St us 5 years later and I just had a colostomy, not because of the csncer, but because of the radiation proctitis. It causes the area to swell and bowel movements aren't any larger than your pinkie so you're always going and it would back up causing extreme sciatic pain and other issues. Anyway, if chemo is questionable to even your onvologist, I would avoid it at all costs, especially if you have any allergies

MKC70
Posts: 25
Joined: Sat May 20, 2017 8:39 pm

Re: Stage IIA: Chemo or not?

Postby MKC70 » Tue Jan 02, 2018 6:38 pm

Tough decison, one that I had to go through as well. I was diagnosed last March with a cancerous polyp. They removed it, but since it was a sesslie polyp, they had concerns that there could be cancer cells below the surface. I made the decison to monitor. Well, I went back in April, had an endoscopic ultrasound and everything looked fine. Went back in July and the cancerous polyp grew back. I was diagnosed stage 2. I had surgery end of Aug.(removing 18" of my colon). Healed well, then started chemo 5 sessions every other week. I am now starting xeloda and radiation tomorrow. Even thought the doctors felt the surgery went well, they felt that I needed the chemo and chemo pill/radiation regimen for preventative care. I had a hard time deciding, but felt that if I wanted to get this far behind me and not have a reoccurence I should do this. I have to say so far I am handling things very well. Nausea only after the first chemo infusion, but that was mainly due to heartburn etc. Once I got on Prilosec, I was fine. It is your decision, but taking from Aug 2017-May 2018 to complete this journey is much better than the alternative of having it come back and progress to something more. These treatments dont necessarily mean that I wil be free and clear, but docs seem to think because of my early diagnosis and age (47) I will be able to beat it. Good luck to you.

sandkeeper
Posts: 14
Joined: Tue Dec 19, 2017 4:58 am
Location: St Albans, UK

Re: Stage IIA: Chemo or not?

Postby sandkeeper » Wed Jan 03, 2018 12:19 pm

Thank you all for your comments and experiences - I wish I had the time to respond to you all individually. I may add some individual follow-ups later.

After my last update here, I told the oncologist that I want to go down the chemo path and am scheduled to start next week. I'm far from confident with that decision, but I was getting concerned that the effectiveness of that 3-4% benefit might be further reduced by the time since my surgery. It'll be coming up for 9 weeks when I start... there's nothing I could've done to make that happen sooner but I didn't want to add any delays due to my own decision-making. Oncologist says that up to 12 weeks after surgery is fine but I'm sure earlier is better.

So basically I pulled the trigger despite not really having made a decision... I just wanted it to be out of my hands. The upside is that I was able to get the oncologist to agree to a DPD test, which will hopefully be back before my first round and alert me to any possible severe reactions (although I know it's no guarantee... just trying to reduce the risks to balance the low benefit!)

Will post an update as things progress.
31 year old male, dx Oct 17
Staged IIA post sigmoid colectomy
T3b N0 M0
LVI-, PNI-, MSS
No chemo
Oct 18: clear CT
Oct 19: clear CT
Nov 19: became a father!
Oct 20: clear CT
Nov 20: clear colonoscopy
Nov 21: no more CTs but still being monitored and NED
Aug 22: clear MRI (tailbone pain triggers a scan)
Nov 22: 5 years cancer-free, discharged from follow-ups
CEA: always 1

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Stage IIA: Chemo or not?

Postby AppleTree » Wed Jan 03, 2018 5:02 pm

I did chemo and radiation before my surgery. Within 8 weeks of surgery I was supposed to start chemo again (this time Folfox). In the meantime my stoma had been removed due to a serious infection. DR did routine blood test pre chemo and discovered I was having liver failure. That put me back in the hospital for 8 days and eliminated all thoughts of starting chemo. It took several months for my liver levels to even out. Exactly 1 year after my 1st surgery, a MRI showed a lung nodule. I had that removed within a few weeks at Mass General (July) and started Folfox at the end of summer. Sometimes I miss a week due to my platlets, but so far I have had 7 of 12 treatments. Personally, I would have done the chemo after surgery, but couldn't. Also, I think I have had a much harder time with Folfox since I do not have a stoma. I get a sandostatin shot 1x a month (ouch!), and take 4-5 Lomotol a day. Hopefully when I am done, I will be able to do just one or the other. Whatever you do, be vigilant about scans. I had scans after my 1st surgery in July, then February and then the July scan showed the lung nodule. Recently I had a full body scan, including brain MRI just to make sure there is still no trace while I am going through my treatments. And if it comes back...I would do it all over again. Folfox exhausts me the 1st week, neulasta gives me awful headaches and I am one if the weird ones that lost my hair. But I am doing it. We all are!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

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ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: Stage IIA: Chemo or not?

Postby ocstacy » Fri Jan 05, 2018 3:30 am

I have heard that 3 months seems to be as effective as 6 months. Mine was 4 months of Xelox. I don't know if that protocol pertains to xeloda only though. Not sure.


My mom will start her last chemo before reversal tom. Xeloda for 4 months. She did well with it last year. I hope that she will tolerate it again okay. You the same
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: Stage IIA: Chemo or not?

Postby rockhound » Fri Jan 05, 2018 9:42 am

DarknessEmbraced wrote:I was diagnosed as stage 2a in 2014. The oncologist told me that chemo would only give me an extra 3% to 5% reduction in recurrence risk. He said that the small benefit outweighed the risk. I followed his suggestion and didn't have chemo. I have been in remission since surgery. I had no negative prognostic factors. The oncologist told me my chance of recurrence is 10% to 15%.


I probably would have not done the chemo if I had colon cancer- with rectal I wanted to lower the chance of recurrence as much as possible.
45 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
5/18 - CT, NED
11/18 - CT, NED
5/19 - CT, NED..moving to yearly CT scans
5/20 - CT, NED
5/21 - CT, NED (4 yr. scan)


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