Rectal case from Hong Kong (UPDATE: Lung Met, NRAS MUTATED, FOLFOX+Avastin)

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

Re: Rectal case from Hong Kong

Postby NHMike » Thu Aug 17, 2017 8:55 pm

Mercy110 wrote:
DarknessEmbraced wrote:I'm so sorry for your mother's diagnosis and I'm glad she's doing well with her chemo. I'm from Canada. My CEA has always been below 1 even before surgery. I get CEA and CA 125(another marker) checked every 3 months. CEA can rise for other reasons besides cancer. I hope your mother has a good scan!



Thank you. That's what we are hoping now. Wish you all the best as well.


My numbers for a baseline: CEA 2.7 before chemo, 1.9 halfway through. I'd love to get below 1.0 but I have no idea as to the scale of this number.

Best wishes for your mother's scan and results.
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

Mercy110
Posts: 118
Joined: Wed Aug 16, 2017 12:13 am

Re: Rectal case from Hong Kong

Postby Mercy110 » Thu Aug 17, 2017 9:13 pm

NHMike wrote:
Mercy110 wrote:
DarknessEmbraced wrote:I'm so sorry for your mother's diagnosis and I'm glad she's doing well with her chemo. I'm from Canada. My CEA has always been below 1 even before surgery. I get CEA and CA 125(another marker) checked every 3 months. CEA can rise for other reasons besides cancer. I hope your mother has a good scan!



Thank you. That's what we are hoping now. Wish you all the best as well.


My numbers for a baseline: CEA 2.7 before chemo, 1.9 halfway through. I'd love to get below 1.0 but I have no idea as to the scale of this number.

Best wishes for your mother's scan and results.



Your numbers are good. At least they are within the normal range.
We are now waiting for the scan on Mon and waiting is like a torture.
Cant stop thinking of the worst, but all I can do is to wait for the result now.
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

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JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

Re: Rectal case from Hong Kong

Postby JJH » Fri Aug 18, 2017 12:25 am

Mercy110 wrote:
It all depends on the scan right now. Apart from these stages, we are worried about the expenditure of using targeted therapy. We are not wealthy and this properly have to consume 1/4 income for us every month....

Here is an article on patient assistance programs:
http://www.webmd.com/healthy-aging/patient-assistance-programs-for-prescription-drugs
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●

Mercy110
Posts: 118
Joined: Wed Aug 16, 2017 12:13 am

Re: Rectal case from Hong Kong

Postby Mercy110 » Fri Aug 18, 2017 8:29 am

JJH wrote:
Mercy110 wrote:
It all depends on the scan right now. Apart from these stages, we are worried about the expenditure of using targeted therapy. We are not wealthy and this properly have to consume 1/4 income for us every month....

Here is an article on patient assistance programs:
http://www.webmd.com/healthy-aging/patient-assistance-programs-for-prescription-drugs


Thanks a lot for your information, but I am not US citizen. I hv done some researches on targeted therapy in hk while hoping my mum's ct scan is clean
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

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Sunwaterandsky
Posts: 164
Joined: Fri Oct 14, 2011 10:06 am
Location: Hong Kong

Re: Rectal case from Hong Kong

Postby Sunwaterandsky » Mon Aug 21, 2017 7:48 am

Mercy, have you considered the public hospitals? The fees are so much lower there. It would help ease the financial burden on the family.
Stage 3B colon cancer at 47 years of age
small benign tumour on Rt adrenal gland
Xelox started 28/10/2011 finished 04/2012
CT scan clear 16/2012
Colonoscopy Clear October 2012
CT scan clear January 2013
CT scan Jan 2016 - small 9mm lung nodule
CT scan April 2017 - lung nodule 1.5 cm, bilateral thyroid lesions
Aug 2017 Right upper lobe lobectomy for lung nodule CC met

Mercy110
Posts: 118
Joined: Wed Aug 16, 2017 12:13 am

Re: Rectal case from Hong Kong

Postby Mercy110 » Mon Aug 21, 2017 8:22 pm

Sunwaterandsky wrote:Mercy, have you considered the public hospitals? The fees are so much lower there. It would help ease the financial burden on the family.



Thank you. We are now having treatments in public hospital actually, though we have the surgery performed in private hospital. She had the ct scan yesterday and we are now hoping for the best. Hopefully no mets and targeted therapy needed because it costs so much even in public hospitals.
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

Maelleous
Posts: 127
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Rectal case from Hong Kong

Postby Maelleous » Tue Aug 22, 2017 5:46 am

Mercy, I wish you and your mum the best. I was stage 3C and in remission (one year later) -- I even was only able to complete 3 rounds of chemo due to a reaction to 5-FU that gave me cardiac arrest, so there is hope. Surgery alone can do wonders and with the additional treatments she is getting, there can be a positive outcome!
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!
Still NED

Mercy110
Posts: 118
Joined: Wed Aug 16, 2017 12:13 am

Re: Rectal case from Hong Kong

Postby Mercy110 » Tue Aug 22, 2017 6:58 am

Maelleous wrote:Mercy, I wish you and your mum the best. I was stage 3C and in remission (one year later) -- I even was only able to complete 3 rounds of chemo due to a reaction to 5-FU that gave me cardiac arrest, so there is hope. Surgery alone can do wonders and with the additional treatments she is getting, there can be a positive outcome!



Thank you for your reply. It must be very difficult. Wish you all the best too. I guess my mum chose a conservative plan for chemo as she only takes xeloda. Let's fight together.
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

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ocstacy
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Facebook Username: stacy

Re: Rectal case from Hong Kong (UPDATE: Lung Met)

Postby ocstacy » Tue Aug 29, 2017 10:06 pm

She took xeloda for 8 chemo, 8 pills each day. We are happy to see that she does not have serious side effect. Actually she almost have no side effect except finger skins color darken and finer hurt with 2 times of vomit.


My mother as well as stage 3 rectal cancer. She just finished the Neoadjuvant therapy which is given as a first step to shrink a tumor before the main treatment, which is usually surgery, is given. It is a type of induction therapy. My mom's tumor is fairly low in the rectum which the GI let me know that she will probably have a colostomy bag for the rest of her life. I researched and found a great surgeon @USC KECK hospital Dr.Sang Lee. He is the chief colorectal surgeon @USC Keck. I actually found him on Yelp out of all places and contacted his patients. I listened to his pod casts and talked to some of his patients, they had great things to say.He let my mom know that he would perform a Laparoscopic proctectomy with hand-sewn colo-anal anastomosis & diverting loop ileostomy. He said he could save her sphincter muscle.

My mom is 77, I have seen her rectum after ending her tx after 08/16. She is in a lot of pain.. like she says it feels like she is peeing razor blades out of her vagina and anus. I have bought her a sitz bath of amazon. She loves it! I also her clean her area. The water bottles help that nurses give to after birth patients. I just want to know if the tumor has shrank. It's very red down there and she has hard time going to the bathroom. Xeloda has been giving her the rashes on her feet and legs. Looks like bug bites.

I forced my mother to get a colonoscopy. I knew in my heart that she had something wrong with her for a long time. She is stubborn and ignored the doctor's orders to get one done. What I have learned, is that Colorectal Cancer is on the rise in Korea with changes to the western diet. My mother ate red meat and RARE meat due to my German's fathers diet. My father had a triple bi bass a few months back. My mother also has Osteoporosis. I really hope and pray that our mother's will get through this. I hope that is has shrunk and not spread more. I believe one lymph was affected and it's a slow growing one. Prayers to you dear mother.
Last edited by ocstacy on Sat Sep 02, 2017 11:17 pm, edited 1 time in total.
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.

Mercy110
Posts: 118
Joined: Wed Aug 16, 2017 12:13 am

Re: Rectal case from Hong Kong (UPDATE: Lung Met)

Postby Mercy110 » Tue Aug 29, 2017 10:15 pm

ocstacy wrote:
She took xeloda for 8 chemo, 8 pills each day. We are happy to see that she does not have serious side effect. Actually she almost have no side effect except finger skins color darken and finer hurt with 2 times of vomit.


My mother as well as stage 3 rectal cancer. She just finished the Neoadjuvant therapy which is given as a first step to shrink a tumor before the main treatment, which is usually surgery, is given. It is a type of induction therapy. My mom's tumor is fairly low in the rectum which the GI let me know that she will probably have a colostomy bag for the rest of her life. I researched and found a great surgeon @USC KECK hospital Dr.Sang Lee. He is the chief colorectal surgeons. I listened to his pod casts and talked to some of his patients. He let my mom know that he would perform a Laparoscopic proctectomy with hand-sewn colo-anal anastomosis & diverting loop ileostomy. He said he could save her sphincter muscle.

My mom is 77, I have seen her rectum after ending her tx after 08/16. She is in a lot of pain.. like she says it feels like she is peeing razor blades out of her vagina and anus. I have bought her a sitz bath of amazon. She loves it! I also her clean her area. The water bottles help that nurses give to after birth patients. I just want to know if the tumor has shrank. It's very red down there and she has hard time going to the bathroom. Xeloda has been giving her the rashes on her feet and legs. Looks like bug bites.

I forced my mother to get a colonoscopy. I knew in my heart that she had something wrong with her for a long time. She is stubborn and ignored the doctor's orders to get one done. What I have learned, is that Colorectal Cancer is on the rise in Korea with changes to the western diet. My mother ate red meat and RARE meat due to my German's fathers diet. My father had a triple bi bass a few months back. My mother also has Osteoporosis. I really hope and pray that our mother's will get through this. I hope that is has shrunk and not spread more. I believe one lymph was affected and it's a slow growing one. Prayers to you dear mother.



Glad to see such a detailed response. It is difficult to accept stoma but my mum's stoma is doing well right now. What I hope now is her lung Mets disappear. Hope ur mum is doing well. I saw your post of having colonoscopy. I too have a colonoscopy after my mum's diagnose and it's clean. God bless our dear mothers.
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

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ocstacy
Posts: 264
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Facebook Username: stacy

Re: Rectal case from Hong Kong (UPDATE: Lung Met)

Postby ocstacy » Tue Aug 29, 2017 10:29 pm

May I ask why your mum was against doing chemo/radiation combo? My mom's cancer has shrunk I think and pray.
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.

Mercy110
Posts: 118
Joined: Wed Aug 16, 2017 12:13 am

Re: Rectal case from Hong Kong (UPDATE: Lung Met)

Postby Mercy110 » Tue Aug 29, 2017 10:39 pm

ocstacy wrote:May I ask why your mum was against doing chemo/radiation combo? My mom's cancer has shrunk I think and pray.



Becoz my mum thinks it is too early for her to take radiation after surgery in 2 months. She thinks radiation is going to loosen her muscle thus more difficult for stoma reversal later. She is also scare of the pain of urination.

Onco told her radiation is only going to help preventing tumor grows again around pelvis but not for Mets, so she decided not to do at all. I do think this is not the main reason for her lung Mets now, too...
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

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

Re: Rectal case from Hong Kong (UPDATE: Lung Met)

Postby ocstacy » Sat Sep 02, 2017 11:22 pm

It is difficult to accept stoma but my mum's stoma is doing well right now


My mom is terrified to get a "Stoma bag" How long has your mom had hers? Is is easy to clean? My mom handled the therapy well, however, when radiation ended, she experienced more pain in her rectum. I don't want to see her in pain anymore. She rely's on Coating. So sad to see our mother's in pain. God bless
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.

Mercy110
Posts: 118
Joined: Wed Aug 16, 2017 12:13 am

Re: Rectal case from Hong Kong (UPDATE: Lung Met)

Postby Mercy110 » Sun Sep 03, 2017 12:34 am

ocstacy wrote:
It is difficult to accept stoma but my mum's stoma is doing well right now


My mom is terrified to get a "Stoma bag" How long has your mom had hers? Is is easy to clean? My mom handled the therapy well, however, when radiation ended, she experienced more pain in her rectum. I don't want to see her in pain anymore. She rely's on Coating. So sad to see our mother's in pain. God bless


My mum's having the bag after her surgery, so that's properly on late May. It is not easy at first but eventually come to get use of it. My mum still hates cleaning sometimes, family support is very important, make sure she doesn't feel like she is a trouble or what. One of the problem is her skin around the soma is going to be hurt at first, but it will become better by using powder or seek for professional advice. Though we hvnt try radiation, we know the tough part is around 2 weeks before the treatment ends. Add oil and get it through. Wish your mum and your family all the best.
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

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

Re: Rectal case from Hong Kong (UPDATE: Lung Met)

Postby ocstacy » Sun Sep 03, 2017 11:47 am

Thank you!! Prayers to you and family. Have you thought about getting a colonoscopy yourself? I had one done about two weeks ago. I am so glad I did. Benign Polp was found. Just glad I had my colon checked as I have issues with hemorrhoids' as the rest of my whole entire family. It's an embarrassing subject but that is one pain in my life that I cannot get rid of. Diet and exercise seem to help. Trying to lose some weight as the dr. mentioned that should help too.
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.


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