Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Aug 09, 2018 6:56 am

Pathology on the port and stoma:

Part A, received fresh labeled "Port ID only", and consists of a metallic silver port (2.7 x 2.3 x 1.1 cm) with attached white plastic tubing (26.0 cm in length and 0.2 cm in diameter). Inscribed on the surface of the port is "VACCESS, AY17405". No soft tissue is included. Gross photograph is taken. The specimen is gross only.

I'm a bit surprised at the length of the tube and impressed as they have to snake that into whereever it goes.

Part B, received fresh labeled "Ostomy", and consists of a U shaped portion bowel (8.1 cm in length and 2.0 cm in diameter) with 2 open origins of resection (2.0 cm in length; inked blue, 2.3 cm in length; inked black). In the midportion of the segment of bowel is an unoriented pink-tan skin ellipse (3.5 x 3.2 cm) displaying a mucosal opening (2.5 x 2.5 x 1.3 cm) which has been sutured shut. The mucosal surface is pink-tan, wrinkled and grossly unremarkable. No masses or polyps are noted. Representative sections are submitted as follows:

It's nice to see that everything was uneventful - cool that I have easy access to this stuff with EMR.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

ValZen
Posts: 33
Joined: Fri Sep 08, 2017 8:16 am

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

Postby ValZen » Thu Aug 09, 2018 10:45 am

Hi Mike, I had to request my password (for about the third time - I have to keep it in a safer place :D ) I've been following your journey as our time of diagnosis and treatments are very similar. Your posts are very helpful as I'm sure many others will agree! My final pathology report after surgery said "T3N2M0". My "new connection" is 3 cm. from the AV and I just had reversal surgery on June 26th. I have to say I'm very happy for you that you're doing so well after a rough start with a stomach bug! It's difficult enough just getting back to a new normal... I'm at about 2 weeks post-op now and it's been hard at times, but very manageable. I think realizing you have control of when you go is HUGE. That was such a relief for me. I'm still dealing with frequency on some days, but am just grateful to be "on the other side" of all the treatments and final surgery. So congratulations to you! I'm sure it must feel great to be back at work. I start back on Monday and look forward to it.

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Aug 09, 2018 7:53 pm

Today I didn't have control or not enough of it so it was a harder day but I managed at the office. We have pretty well-equipped bathrooms which helps.

I had my labs today and everything that I saw is normal except for the RBC and H&H which are a little low. The important one I get from the Oncologist tomorrow morning: the CEA.

I found some articles on what my sister has (she was given six months to live) and also found a trial for a cure which was 100% successful. It requires sibling stem cells from a bone marrow transplant so I need to figure out if I can be a donor (and my other sisters too). The paper I referenced has a cure without sibling stem cells - you take donor stem cells with the same Alleles and suppress the immune system and those foreign stem cells grow marrow (with foreign DNA) which produces red and white blood cells and lymphocytes. The treatment is similar to the length for CRC 3B treatment and sounds long and involved. She's been looking for a diagnoses for this for over 12 years and she has one. The research was done at John Hopkins last year but I'd guess that Dana Farber could do the treatment.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

ValZen
Posts: 33
Joined: Fri Sep 08, 2017 8:16 am

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

Postby ValZen » Thu Aug 09, 2018 9:42 pm

That's good you can be comfortable at your office and your bathrooms have what you need on the days you need it! There's another reversal surgery group I've joined and it really puts things in perspective and makes me realize 1-2 weeks - even 1-2 months is pretty early in recovery. (My surgery date was July 26th - I wrote June in my earlier post.) A guy on the site wrote today (he just had reversal surgery 3 weeks ago) that when he farts, he "poops a little"...when he has to poop and is on his way to the bathroom...he poops a little. That made me laugh and it was surprising to see the other 40-50 people who responded to his comment basically saying "me too!" So, I'm really encouraged by the times I have full control and try not to be too discouraged if there's a "blip" like the guy mentioned... It's easier some days than others, but I do believe from all the posts I've read from people further out, over time it does get better and better.

I hope your CEA test result is in the normal range for you now and it's a good appointment overall tomorrow!

I also hope that either you or one of your sisters can be a donor for your sister! It blows me away what can be done treatment-wise now. You can't get much better than a trial that's 100% successful - wow!

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Aug 09, 2018 11:55 pm

ValZen wrote:That's good you can be comfortable at your office and your bathrooms have what you need on the days you need it! There's another reversal surgery group I've joined and it really puts things in perspective and makes me realize 1-2 weeks - even 1-2 months is pretty early in recovery. (My surgery date was July 26th - I wrote June in my earlier post.) A guy on the site wrote today (he just had reversal surgery 3 weeks ago) that when he farts, he "poops a little"...when he has to poop and is on his way to the bathroom...he poops a little. That made me laugh and it was surprising to see the other 40-50 people who responded to his comment basically saying "me too!" So, I'm really encouraged by the times I have full control and try not to be too discouraged if there's a "blip" like the guy mentioned... It's easier some days than others, but I do believe from all the posts I've read from people further out, over time it does get better and better.

I hope your CEA test result is in the normal range for you now and it's a good appointment overall tomorrow!

I also hope that either you or one of your sisters can be a donor for your sister! It blows me away what can be done treatment-wise now. You can't get much better than a trial that's 100% successful - wow!


Could you send me a link to the Reversal Forum? I wouldn't mind seeing what a lot of other people are doing in real time.

I was in the bathrooms for the past 2 1/2 hours pooping, cleaning, pooping, cleaning, pooping, cleaning. Sometimes the cleaning was in the shower. What's frustrating is you wash yourself off, dry yourself, and then you need to go again. I bought three packages of moist towels and they are almost gone. Those things are helpful and I plan to buy ten packages tomorrow after seeing the oncologist. It's critical to maintain your supplies. This feels like a war.

If we can get a sibling donor, then the process is a lot easier. With a sibling donor and good HLA matches, they won't need the immunosupressants (I believe) which will compromise her immune system. I asked my son and he said that siblings are the best as they have theoretically half from each parent, same as the recipient. As you get farther away, you get exponentially more differences. My son said that it's possible to turn normal cells into stem cells and the ideal cells would come from the patient but that's obviously not an option or there wouldn't have been the trial for stem cells from those not even a close match.

The technology is amazing. I do think that the person that gets the treatment may have different identifying DNA. Their blood might show the donor DNA while other parts of their body would show their own. I've seen this sort of thing on CSI before.

Stools are getting harder and one problem I have is that the skin around the anus is getting red or bloody. I was considering putting some petroleum jelly around the opening and inside (I have a ton of neoprene gloves for when I was on Oxaliplatin in freezing weather). I seriously hope that everything or 98% is out of me now so that I can just get up, shower, and go to the oncologist appointment. I think that I'm not going into the office.

Going in to see the surgeon will be even a bigger challenge - my plan is not to eat for 18 hours before the appointment. I have about 27 pounds that I could lose and not care about it. At that point, my waist is around 31 inches. The poop issues are such a big issue that I think very little about the wound these days. It is improving too, 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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

ValZen
Posts: 33
Joined: Fri Sep 08, 2017 8:16 am

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

Postby ValZen » Fri Aug 10, 2018 8:49 am

Are you on FaceBook at all? I don't use it much, but it comes in handy for the support groups. The Group is called "Reversals-Ileostomy/Colostomy Reversal Discussion And Support". There are a lot of people in the early stages of reversal and it's a very supportive forum. Whenever I thought I was having something weird happen, it seems I would find someone else on there going through the same thing.

It's distressing to be going through what you're going through, I know. I have had times where I'm shocked when there's been leakage and feel very anxious trying to get myself cleaned up. As I understand it, the colon is one of the organs in the body that actually does go to sleep when it's not being used, and the rectum/anus/sphincter also get sluggish. So 6-7 months of being dormant is going to take a while to normalize. I've been doing the kegel exercises every day and that has helped too. It is frustrating though, just wanting to get on with your day and being hung-up with toilet issues. I had to go to my doctor yesterday afternoon and brought a whole kit (change of clothes, pads, wet wipes). I didn't end up needing it that time, but it was comforting to have it with me.

That's a good sign your stools are becoming more solid. The petroleum jelly is soothing and I also use Polysporin at night if I've gone a lot that day, to help heal while I'm sleeping.

With more than one sibling to work with as potential donors (as it sounds like there are with your family...) I hope those increased odds work in your sister's favor and she gets the HLA matches! And I think I may have seen that CSI episode re the DNA...lol!

I hope all goes really well for you at the Oncologist today, Mike!

Take care,
Val

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Fri Aug 10, 2018 8:50 am

NHMike wrote:Could you send me a link ... ? I wouldn't mind seeing what a lot of other people are doing in real time....

Reversals-Ileostomy/Colostomy Reversal Discussion And Support
https://m.facebook.com/groups/319210318267068/

Living with Low Anterior Resection Syndrome
https://m.facebook.com/groups/786555674854989/
Last edited by O Stoma Mia on Sat Aug 11, 2018 7:43 am, edited 2 times in total.

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Aug 10, 2018 8:54 am

“Cured”
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

Eleda
Posts: 167
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

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

Postby Eleda » Fri Aug 10, 2018 9:02 am

Brilliant :wink: :!: :!: :!: :!: :!: :!: news Mike :wink: :wink: :wink: :wink: :wink:
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Caat55
Posts: 527
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri Aug 10, 2018 9:06 am

Yippee, cheers, wahoo!!!
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

ValZen
Posts: 33
Joined: Fri Sep 08, 2017 8:16 am

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

Postby ValZen » Fri Aug 10, 2018 11:08 am

Congrats Mike! Just the news you needed to hear!

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Aug 10, 2018 11:17 am

I think that he should have said NED.

He also said that he learned a lot from me.

The CEA number this morning was 2.8. Normal is equal to or below 3.8. It was 2.8 when I was diagnosed but I was running a lot back then. It appears that the CEA is more of an indicator of my activity level than it is of cancer.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

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susie0915
Posts: 847
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 » Fri Aug 10, 2018 1:59 pm

I have never been told I'm cured yet, but my treatment was curative. I will be cancer free for 3 years in September which is when I had surgery. I asked my oncologist when I was considered cancer free and she said after surgery. I wasn't sure if it was considered after surgery or after I completed treatment. Cured is awesome Mike, that must've felt good.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/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 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change 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

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Atoq
Posts: 312
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Sat Aug 11, 2018 1:05 am

So nice! Congratulations! :D

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
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
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Aug 11, 2018 8:58 am

O Stoma Mia wrote:
NHMike wrote:Could you send me a link ... ? I wouldn't mind seeing what a lot of other people are doing in real time....

Reversals-Ileostomy/Colostomy Reversal Discussion And Support
https://m.facebook.com/groups/319210318267068/

Living with Low Anterior Resection Syndrome
https://m.facebook.com/groups/786555674854989/


I submitted a join request. I've never had a FB account before because of privacy concerns so I set up something of a sandbox along with a lot of redirection to try to protect privacy.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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


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