Rectal cancer (Stage 3A) diagnosed late June 2017

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Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Tue Feb 12, 2019 11:25 pm

Good news Mike!

Susan
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
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

NHMike
Posts: 2269
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Feb 18, 2019 5:18 pm

Things have improved with rest and stools are relatively firm now and the liquidy stuff has been gone for about five days. There really isn't any abdominal pain anymore though there is fairly noisy gurgling in the area. I think that there's scar tissue that slows things down and there's some benefit to that but I will clearly have to take it easy on working out.

I am also considering retiring later this year (I'm 60) so the challenges would be health insurance after COBRA though I think that I can manage that. I spoke to an old, retired friend about it last night and he was quite sure I could manage it. I could always go back to work later on too. I asked him if he worries about money but he has $30K in annual expenses and has more income than that from social security, a small pension and CDs. He says that he loves it as he has time and opportunity to do enjoyable things when he wants to do them.

I have worried myself about having enough money but we both agreed that that's an irrational worry.

So healthwise, I'm back to just LARS but things are getting a little better a little at a time. I'm going to add back vegetables and other things that I stopped while I was trying to figure things out.

I didn't see a CEA test result in the portal but sometimes that's embargoed for a few days. DFCI does turn them around quickly but I've found that hospitals sometimes don't give you some results until the doctor okays the release.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Mon Feb 18, 2019 10:38 pm

Isn't it sad that health insurance is what drives so many of the important decisions about our life?
I am concerned that is I were to retire I would not be able to get insurance I can afford because of this preexisting condition.
Glad to here things are settling for you.

Susan
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
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

NHMike
Posts: 2269
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Feb 18, 2019 11:16 pm

Caat55 wrote:Isn't it sad that health insurance is what drives so many of the important decisions about our life?
I am concerned that is I were to retire I would not be able to get insurance I can afford because of this preexisting condition.
Glad to here things are settling for you.

Susan


The ACA plans are supposed to not take preexisting conditions into account which is why the plans are getting so expensive. My guess is that costs will run $2,000/month to $3,000/month but that should be manageable. We paid off the mortgage 19 years ago and put the kids through college without any debt and are in pretty good financial shape. It's scary stuff contemplating going without a salary and benefits but it's something that everyone should look at and plan for in their early 40s. There are also options if there's a working spouse with good health insurance.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2269
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Feb 19, 2019 8:49 am

The CEA just came though and it's 1.2. This is the lowest number I've seen since around the LAR. Scans are more important though.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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susie0915
Posts: 937
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Tue Feb 19, 2019 3:46 pm

Caat55 wrote:Isn't it sad that health insurance is what drives so many of the important decisions about our life?
I am concerned that is I were to retire I would not be able to get insurance I can afford because of this preexisting condition.
Glad to here things are settling for you.

Susan

This is the reason my husband doesn't retire. I don't work but he provides the health insurance through his job, and we are not eligible for medicare for over 5 years. Hopefully, he is able to keep on working until then. He is very healthy but you never know.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy

Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Wed Feb 20, 2019 12:11 am

My husband should be eligible for Medicare in a few. We have one 22 year old daughter who we would like to keep on insurance, other four(combined family) are one their own. I will probably continue to work for a bit as I am only 56 and can get health benefits at half time, not cheap but better than ACA. I realize these are first world problems, its the insurance that has given me the option to look into the future.

congrats on the CEA Mike. Good news!
Susan
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
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Wed Feb 20, 2019 12:18 am

susie0915 wrote:
Caat55 wrote:Isn't it sad that health insurance is what drives so many of the important decisions about our life?
I am concerned that is I were to retire I would not be able to get insurance I can afford because of this preexisting condition.
Glad to here things are settling for you.

Susan

This is the reason my husband doesn't retire. I don't work but he provides the health insurance through his job, and we are not eligible for medicare for over 5 years. Hopefully, he is able to keep on working until then. He is very healthy but you never know.


I am very grateful my husband had better insurance than me. We will figure it out as I want time to enjoy like without cancer with him again.
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
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

NHMike
Posts: 2269
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Mar 08, 2019 5:25 pm

I played tennis for the first time in 1.5 years last Sunday and am scheduled to play again this Sunday. I am having obstruction bouts weekly and they are a headache but I'm managing through it. The LARs issues are still there but I think that the body is adapting very slowly. There are still days with clustering and they are annoying but there are fewer of them. Sometimes I think that the obstructions decrease the bouts of LARs. So things are going okay - I'm working a ton of hours and Spring arrives tomorrow - at least in terms of temperatures. The high temps are all well above freezing for the next 12 days and we will have a few days in the 50s. So things are somewhat better and I can see this reversal stuff being a pain in that it slowly gets better. Emphasis on slowly.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2269
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Mar 08, 2019 8:12 pm

One thing about the beginning of the year that surprises me but it shouldn't.

That is in paying the deductibles on medical costs. It may be $2,000, $4,000 or $7,000 but it's front-loaded into the beginning of the year. United Healthcare sent me a note on what I may owe so I expect the bills to roll in soon.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2269
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Mar 22, 2019 10:09 am

Minor update: no obstructions for a week which is good. I have been running more and doing less strength-training and have been very busy at work. I can't wait until retirement to build my body back up. It's possible that I take a year off, rebuild and then go back to work again but I don't know at this point.

I am using far fewer materials (Depends, pads, wipes, etc.) than before and that makes me happy as one downside is using up a lot of stuff - it's somewhat wasteful and adds to costs. Control continues to get better though at a glacial pace. So my surgeon may be correct in that there's a lot of improvement after a year. It's just not fun going through that year.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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

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

Postby O Stoma Mia » Fri Mar 22, 2019 1:29 pm

In 2018, NHMike wrote:I wrote the first paragraph of the introduction. I find that it helps to put something down and get the document started as a placeholder.

Mike -

I was wondering how your writing project is progressing. Is it still in the pipeline? Do you have a proposed title or a proposed outline yet?

NHMike
Posts: 2269
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Mar 22, 2019 1:35 pm

O Stoma Mia wrote:
In 2018, NHMike wrote:I wrote the first paragraph of the introduction. I find that it helps to put something down and get the document started as a placeholder.

Mike -

I was wondering how your writing project is progressing. Is it still in the pipeline? Do you have a proposed title or a proposed outline yet?


I haven't made progress on it as I've been very busy with work.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2269
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri May 03, 2019 6:38 pm

I'm still having a fair bit of LARS issues but part of it is not having time/opportunity to experiment with more things. I really need some kind of long term break from work or it's going to force me to take a long-term break. I created a new email account and a new Facebook account and requested membership in the LARS forum there. I will basically run Facebook and the email account from a separate browser on a separate machine (no use of phone or tablets or general use of browsers so that Facebook can read any leakage from other tabs), so hopefully it keeps Facebook happy, even as I keep things private.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2269
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri May 03, 2019 7:43 pm

I tried logging in from another system and it requested more information which I provided but balked at a photo. So I created another email account and another Facebook account and requested access again. I did everything in a separate browser and will just use this browser for this email and Facebook. I really wish that the group would move off Facebook as a lot of people don't have access to it and those that do use it give out a lot in terms of personal information.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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