Rectal cancer (Stage 3A) diagnosed late June 2017

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mpbser
Posts: 430
Joined: Wed Apr 19, 2017 11:52 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby mpbser » Sat Mar 24, 2018 4:04 pm

I haven't posted in a while because I also haven't been around much. I have been incredibly swamped with work and insanely busy. Husband is doing great. He's in really great spirits. What a completely different life we have compared to one year ago. We're doing great! Thanks for asking!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

NHMike
Posts: 1557
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sat Mar 24, 2018 4:22 pm

mpbser wrote:I haven't posted in a while because I also haven't been around much. I have been incredibly swamped with work and insanely busy. Husband is doing great. He's in really great spirits. What a completely different life we have compared to one year ago. We're doing great! Thanks for asking!


I'm very happy to hear it. Spring is here in New England and that should make life more pleasant. You guys were in quite the ordeal and it's nice to have folks that have made it through. May he stay NED forever.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

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chemo sabe
Posts: 444
Joined: Fri Mar 09, 2012 9:01 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby chemo sabe » Sat Mar 24, 2018 4:36 pm

NHMike - I seem to be missing something. I think you have forgotten to tell us WHY you have not started treatment?? June was like 9 months ago. No miracle is going to occur - you need to start treatment. I was diagnosed in October, started radiation/chemo in November, my operation to resection my colon was in Feb and I started adjuvant chemo a month later. I think you have foolishly wasted time. A cancer tumor sheds THOUSANDS of cells each day. In the case of rectal cancer, body circulation puts many of those cells into your lungs. Days, weeks and months have gone by and your tumor continues to grow and can penetrate thru and really, really, really, screw you up even more. Stop fooling around and start the chemo / radiation. find a surgeon and get the operation scheduled.
64 year old male
Diagnosed Stage 3 Rectal Cancer - T3N1M0 - Oct 2011
28 radiation treatments with xeloda
Colon resection with ileostomy Feb 2012
8 Rounds of Xelox completed Sept 2012
Ileostomy reversal surgery Oct 2012
Incisional Hernia Repair Nov 2013

NHMike
Posts: 1557
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sat Mar 24, 2018 4:43 pm

chemo sabe wrote:NHMike - I seem to be missing something. I think you have forgotten to tell us WHY you have not started treatment?? June was like 9 months ago. No miracle is going to occur - you need to start treatment. I was diagnosed in October, started radiation/chemo in November, my operation to resection my colon was in Feb and I started adjuvant chemo a month later. I think you have foolishly wasted time. A cancer tumor sheds THOUSANDS of cells each day. In the case of rectal cancer, body circulation puts many of those cells into your lungs. Days, weeks and months have gone by and your tumor continues to grow and can penetrate thru and really, really, really, screw you up even more. Stop fooling around and start the chemo / radiation. find a surgeon and get the operation scheduled.


My treatment history is in my signature.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

NHMike
Posts: 1557
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sat Mar 24, 2018 6:49 pm

1+ mile run and a bunch of Pilates/Yoga stuff. I wanted to run another mile but no time. I'll try running tomorrow. It would be nice to do at least one mile a day but I don't think that I can predict how I'm feeling day to day. Running five days a week might be a good goal. The Stealth Belt should arrive Monday and I hope that helps. I'm pretty careful running as I don't want to cause any damage. I'm also only running inside so that I'm close to a bathroom to keep the bag as empty as possible.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Caat55 » Sun Mar 25, 2018 12:18 pm

Good for you Mike. Keep it up as it motivates many of the rest of us. We are doing firewood today, a huge oak just tipped over in the storm on Thursday. So I am pushing the wheelbarrow and stacking, I figure all exercise is good but it is a struggle to get moving.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

NHMike
Posts: 1557
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Mon Mar 26, 2018 8:46 pm

Got in 3 miles today. 1 mile was outside with the Stealth Belt. I like the design though I think that they video suggests orienting the bag sideways instead of up and down. Max speed was 7 MPH which felt like flying compared to what I have been doing. This is our housecleaning week and for me it's mostly lifting heaving things and moving them around and then vacuuming afterwards and then putting things back. It takes about a week to do the whole house and it's a different kind of workout.

The finger neuropathy has decreased. It's still there but I don't think of it as much because it isn't so strong. If it keeps declining, then I should be able to add Oxaliplatin back in for Cycle 6. The temperatures should be in the 50s during the day by the time of the next cycle so it will be easier.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

NHMike
Posts: 1557
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Mar 28, 2018 1:22 pm

I ran four miles yesterday and I'm going to take a bit of a break. To go from nothing to 4 miles in a day is overdoing it. In general, you shouldn't increase mileage by more than 10% per week. I was quite tired yesterday and got a lot of sleep last night but I'm feeling very good today. The warm (60+) temperatures help but running does all sorts of good things (and a few bad) to your body. If I kept at this pace, I'd likely have knee problems. Better to go back down to no more than a 1.5 miles a day for a while and slowly built up.

The neuropathy continues to decline but not to zero. I'm hoping for zero for the next infusion.

Had a bunch of bills that the insurance didn't cover fully but added together made a decent chunk of change. That happens until you get to the out-of-pocket maximums and I'm probably not there yet. I was expecting this to happen though.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

NHMike
Posts: 1557
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Apr 04, 2018 7:35 am

I haven't done much activity-wise since last week outside of throwing out about 1,000 pounds of stuff in our annual cleaning. I haven't been sleeping well (wife is still jet-lagged) and have been quite busy with work.

This morning I had a bag leak. But I was pleasantly surprised that it had been contained by the Hypafix tape (this stuff is really great). So I changed my bag after three days (I have been changing it ever 7-9 days lately) and it probably means that I should order some more of them (last order was in February I think). I still have 27 left which would be enough if I only changed once a week but I don't know if that's realistic given that stuff happens.

Today is my last day for the Xeloda for this cycle and the arthritic feeling is moderately strong. I hope that it abates by the start of the next cycle. The neuropathy lasted a bit over four weeks so I'm inclined to go with the Oxaliplatin next cycle. I think that I'm going to wind up with 8 cycles of Xeloda and 6 cycles of Oxaliplatin. What really helps is when you delay or reduce for a bit and the side-effects drop to nothing. You have a better feeling that the side-effects won't be permanent.

I have tried to paint a picture of normalcy to others as it makes them more comfortable and draws less attention to me. But it's resulted in people asking me to do more and more (work, family, relatives, Church). People are, for the most part, treating me like I'm not sick, which is nice in a way but a lot of people ask me to do things on a regular basis and sometimes I have to push back pretty hard. I have a Type A personality and often take on more than I can actually do and it usually leads to short-term health problems. At any rate, I am pushing back, and sometimes pretty hard, on requests. Some of it is also people not stepping up to handle something and leaving it to someone else to handle it. If you're a responsible type, then you don't like to see things dropped on the floor.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

heiders33
Posts: 250
Joined: Sat Nov 04, 2017 11:08 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby heiders33 » Wed Apr 04, 2018 11:58 am

I am totally the responsible type, and totally get how hard it is to push back! But you have a perfectly good excuse. I started getting used to saying no to things. Once you’re recovered from treatment, you will have plenty of opportunity to say yes to things again. But now you have to do what’s right for you. For a little while, you have to look out for yourself first. For one thing, it will help you be around later to help others!
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI inconclusive
August 2018: PET abnormal, liver enzymes normal, CEA 2.4

Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Caat55 » Wed Apr 04, 2018 1:09 pm

My friends totally forget I have cancer when we are out and about. Last night was first in bocce season, it felt just like it did before cancer. Someone joked about making a shot and said, " sure and when I ,are that shot I suppose you want me to cure cancer?" I countered with ye and everyone laughed cause they forget.
It has its pluses and minuses. Actually it's only my first round and I feel nothing. Even have a few sips of cool cider last night, freaking me out.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

NHMike
Posts: 1557
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Apr 04, 2018 7:44 pm

The Lancet: 3 months of adjuvant chemo = 6 months: http://www.thelancet.com/journals/lanon ... 70-2045(18)30093-7/fulltext

6088 patients underwent randomisation between March 27, 2008, and Nov 29, 2013. The intended treatment was FOLFOX in 1981 patients and CAPOX in 4107 patients. 3044 patients were assigned to 3 month group and 3044 were assigned to 6 month group. Nine patients in the 3 month group and 14 patients in the 6 month group did not consent for their data to be used, leaving 3035 patients in the 3 month group and 3030 patients in the 6 month group for the intention-to-treat analyses. At the cutoff date for analysis, there had been 1482 disease-free survival events, with 740 in the 3 month group and 742 in the 6 month group. 3 year disease-free survival was 76·7% (95% CI 75·1–78·2) for the 3 month group and 77·1% (75·6–78·6) for the 6 month group, giving a hazard ratio of 1·006 (0·909–1·114, test for non-inferiority p=0·012), significantly below the non-inferiority margin. Peripheral neuropathy of grade 2 or worse was more common in the 6 month group (237 [58%] of 409 patients for the subset with safety data) than in the 3 month group (103 [25%] of 420) and was long-lasting and associated with worse quality of life. 1098 serious adverse events were reported (492 reports in the 3 month group and 606 reports in the 6 month group) and 32 treatment-related deaths occurred (16 in each group).
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

User avatar
Atoq
Posts: 279
Joined: Wed Oct 25, 2017 9:31 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Atoq » Thu Apr 05, 2018 3:02 am

Thanks for posting it, so it looks like 6 months only increases side effects, but does not give any benefits compared to 3 months treatment. At least for three year survival.

Best

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery

Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Caat55 » Thu Apr 05, 2018 5:29 pm

Wonder what the severe adverse side effects were and why higher in 3 month group? I am two weeks out from first chemo, off xeloda for week. Can tolerate cool beverage, take food from frig.
Was this your experience?
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

NHMike
Posts: 1557
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Thu Apr 05, 2018 5:58 pm

Caat55 wrote:Wonder what the severe adverse side effects were and why higher in 3 month group? I am two weeks out from first chemo, off xeloda for week. Can tolerate cool beverage, take food from frig.
Was this your experience?


I was okay after the first week on the first cycle. I think that it took me 1.5 to 2 weeks go get rid of the cold sensitivity on the second cycle.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18


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