Finally....some really great news!!!

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mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Thu May 24, 2018 5:20 am

My husband and I touched base in person yesterday about his appointment (I didn't see him all day on Tuesday when he went to Mass General in Boston). He said that his doctors told him how much they love him as a patient because he is always so upbeat and positive. Even when he got the bad news when the liver surgeon said he would need open surgery, he took it in stride. I remember how his oncologist had stressed in our very first meeting with him that a positive attitude has a big influence. They are extremely pleased with his NED status. Their encouraging, upbeat attitude sure does help. There is power in positive thinking!
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

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Finally....some really great news!!!

Postby Shana » Thu May 24, 2018 3:18 pm

Congratulations on your wonderful news!

Power of positive thinking sounds like a great motto. I hope you both have a wonderful summer and celebrate and cherish every day onward! :D
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

Daniellabella
Posts: 41
Joined: Wed May 23, 2018 10:32 pm

Re: Finally....some really great news!!!

Postby Daniellabella » Thu May 24, 2018 3:57 pm

CONGRATS!!!

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Mon Jun 04, 2018 4:10 am

My husband has decided to leave his port in. While he's positive that he "beat this" he is realistic. He doesn't want to have to go under again and have another one put in if he has to do chemo again. I want him to meet with his local oncologist to talk about the pros and cons of leaving a port in for a while. He also needs a routine flush, so I will call to schedule those back-to-back. I don't think that this is a decision he should make without talking to a doctor.
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

MissMolly
Posts: 564
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Finally....some really great news!!!

Postby MissMolly » Mon Jun 04, 2018 12:36 pm

mpbser:
I have had a port for close to 5 years (a double lumen power port) with no concerning repercussions. The original port was replaced due to a fibrin plug that did not resolve with clot-busting medication. I am not a cancer patient but rather a person with generally frail health due to broad endocrine failure. My port sits patiently in a use-as-needed mode. When my health takes a downturn, my port is accessed to provide needed IV medications. The port frees me from multiple needle sticks and infiltrated IV sites.

Any number of people with chronic conditions have long-standing ports. Treatments for auto-immune illnesses (Chron's and rheumatoid arthritis, as examples) often benefit from long-term ports.

I have my port flushed every 6 weeks, a simple process. I am petite/thin and do find that my port site can still be tender from time to time. But other than that, it causes me no distress. As the port is internally placed, there is no heightened risk of infection as would be the case with an external PICC line. I suspect that I will have a port for the remainder of my life.

I just want you to know keeping a port for a longer time frame after your husband’s active treatment does have a legitimate role.
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Tue Jun 05, 2018 9:21 am

Thanks for the input. I checked this forum shortly before scheduling his port flush this morning. He and I hadn't talked yet about my concerns and now I see that I may as well not be concerned. Always a nice thing, to take a concern away :)
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

Allen
Posts: 9
Joined: Fri Jun 01, 2018 2:29 pm
Facebook Username: Allen

Re: Finally....some really great news!!!

Postby Allen » Wed Jun 06, 2018 2:11 pm

Congrats and God Bless! I think it's encouraging for everyone to hear positive news.

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Fri Sep 21, 2018 3:25 pm

I dug up this old thread that I had started to share recent good news. Husband had a colonoscopy Wednesday. His results: completely clear not even a tiny polyp in sight. He only has about 7 inches of colon - so not much territory for one to develop. This was his first since his subtotal colectomy a year ago. His doctor says he doesn't need another one for 3 to 5 years. Husband is opting for 3.
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: 1784
Joined: Fri Jul 21, 2017 3:43 am

Re: Finally....some really great news!!!

Postby NHMike » Fri Sep 21, 2018 7:12 pm

mpbser wrote:I dug up this old thread that I had started to share recent good news. Husband had a colonoscopy Wednesday. His results: completely clear not even a tiny polyp in sight. He only has about 7 inches of colon - so not much territory for one to develop. This was his first since his subtotal colectomy a year ago. His doctor says he doesn't need another one for 3 to 5 years. Husband is opting for 3.


Very glad for you and your husband through your great ordeal.
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

NHMike
Posts: 1784
Joined: Fri Jul 21, 2017 3:43 am

Re: Finally....some really great news!!!

Postby NHMike » Fri Sep 21, 2018 7:12 pm

mpbser wrote:I dug up this old thread that I had started to share recent good news. Husband had a colonoscopy Wednesday. His results: completely clear not even a tiny polyp in sight. He only has about 7 inches of colon - so not much territory for one to develop. This was his first since his subtotal colectomy a year ago. His doctor says he doesn't need another one for 3 to 5 years. Husband is opting for 3.


Very glad for you and your husband through your great ordeal.
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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LeonW
Posts: 348
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Finally....some really great news!!!

Postby LeonW » Sat Sep 22, 2018 10:16 am

Am very happy to see how things are working out for you. Congrats again.
Leon
Dec 2012 CC (7 cm mass), 2 unresect liver mets, CEA 41.8 (MM @65yrs)
Jan 2013 colectomy @ spleen, 2/26 nodes IVa T3N1bM1a MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2x failed PV embolization
Oct 2013 - R liver resect 28 hosp days (delirium, liver failure, emboli, encephalopathy) pCR - no cancer cells
2014/15 - recovery; scopy finds polyp
2016 - new town, new life
June 2018 - 5 yr mark, 2 polyps
clean CTs and (1.3-1.4) CEAs: 4x2014, 6x2015-17, 1x2018; next June 2019

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Sat Sep 22, 2018 10:37 am

Thanks, guys. I'm nervous as hell about his November 27th MRI but trying to stay optimistic. As I have written about in other threads, I don't believe CTs are appropriate for met-to-liver surveillance. He had a clear CT a few months ago, but that really doesn't tell much at all, especially when his liver spots (one cancerous, one benign) were never detected by CT.

His diet and lifestyle are as bad as ever. The only difference now is that he doesn't gorge on sweets and takes supplements, all which are very beneficial and anti-met. Deep down, I am petrified, to be honest, but I keep that to myself (i.e. from him).
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: 1784
Joined: Fri Jul 21, 2017 3:43 am

Re: Finally....some really great news!!!

Postby NHMike » Sat Sep 22, 2018 12:27 pm

mpbser wrote:Thanks, guys. I'm nervous as hell about his November 27th MRI but trying to stay optimistic. As I have written about in other threads, I don't believe CTs are appropriate for met-to-liver surveillance. He had a clear CT a few months ago, but that really doesn't tell much at all, especially when his liver spots (one cancerous, one benign) were never detected by CT.

His diet and lifestyle are as bad as ever. The only difference now is that he doesn't gorge on sweets and takes supplements, all which are very beneficial and anti-met. Deep down, I am petrified, to be honest, but I keep that to myself (i.e. from him).


I've seen the same thing with some people that had METs develop but weren't caught on earlier CTs. Hopefully his scans are clean.
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

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Mon Sep 24, 2018 10:05 am

OMG. I just read my husband's CT reports from late May. I didn't go to this appointment with him and he returned very optimistic, saying that all was clear. But apparently NOT! Finding: There are scattered nodules
measuring up to 4 mm including in the RIGHT lung on image 59, and LEFT lung on image 44 and 46. I realize that they may be benign but these are NEW. Why didn't the doctor talk to my husband about these???? I'm shocked and crying. I don't know what to do. I don't know whether to say anything to him because he believes he has "beat this." He might not have.
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

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Mon Sep 24, 2018 10:08 am

And OH, I just saw this at the bottom of the report: Follow-up chest CT in 3 months or as per clinical protocol

Then WTF didn't his doctor order this? WTF did he say a CT in 6 months?!
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


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