Rectal cancer (Stage 3A) diagnosed late June 2017

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heiders33
Posts: 310
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Thu May 10, 2018 2:52 pm

I started taking aspirin but then I started bruising on my leg so I stopped.

I eat nuts and I take probiotics, vitamin D3, curcumin, lglutamine, and Turkey tail mushroom extract every day. I don’t know if it will help but it’s not hurting so I continue.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

Caat55
Posts: 544
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri May 11, 2018 12:08 am

NHMike wrote:I had a generally crummy day yesterday but was able to function.

I also had some potato chips last night. The purpose was to avoid diarrhea, and this worked nicely, and to avoid calf cramps overnight, and this worked out too. Bear in mind that I also had 400 MG Mg yesterday morning. I'm taking additional Magnesium and Calcium via tablets and Magnesium, Calcium, Sodium and Potassium via Nuun tablets in warm water. I hate not being able to drink cold water. Pushing onward for the last Oxaliplatin infusion effects.

I'll be really annoyed if the oncologist wants to do one more.

I think that tree nuts have a much bigger effect than Oxaliplatin on recurrence. But there's no guarantee that patients will continue eating them in the future. I eat them because I like them and Costco sells them in large quantities.


The calf cramps are crazy aren’t they? I tried to eat a banana after infusion but it tasted awful .i notice a metallic flavor this time. I have two to go. It must feel so great to have it done!!!
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

NHMike
Posts: 1838
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri May 11, 2018 5:21 am

Caat55 wrote:
NHMike wrote:I had a generally crummy day yesterday but was able to function.

I also had some potato chips last night. The purpose was to avoid diarrhea, and this worked nicely, and to avoid calf cramps overnight, and this worked out too. Bear in mind that I also had 400 MG Mg yesterday morning. I'm taking additional Magnesium and Calcium via tablets and Magnesium, Calcium, Sodium and Potassium via Nuun tablets in warm water. I hate not being able to drink cold water. Pushing onward for the last Oxaliplatin infusion effects.

I'll be really annoyed if the oncologist wants to do one more.

I think that tree nuts have a much bigger effect than Oxaliplatin on recurrence. But there's no guarantee that patients will continue eating them in the future. I eat them because I like them and Costco sells them in large quantities.


The calf cramps are crazy aren’t they? I tried to eat a banana after infusion but it tasted awful .i notice a metallic flavor this time. I have two to go. It must feel so great to have it done!!!


Calf cramps can be dangerous (as in doing damage) but the you usually figure out how to avoid that.

I had an Mg tablet (thanks for the reminder). I'll take a Nuun in the office. It won't really feel done with Oxaliplatin for at least another week. My allergies really kicked in yesterday and I'm running HEPA filters at home to keep them from going crazy. It should only last a few days but the combination was awful.
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: 1838
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri May 11, 2018 10:22 am

https://www.statnews.com/2018/05/11/dan ... facturing/

http://www.dana-farber.org/newsroom/new ... e-efforts/

A ribbon cutting celebrating the expanded and renovated Connell and O’Reilly Families Cell Manipulation Core Facility (CMCF) was held today at Dana-Farber Cancer Institute. Laurie H. Glimcher, MD, president and CEO of Dana-Farber Cancer Institute and Jerome Ritz, MD, Executive Director of the CMCF were joined by Travis McCready, president and CEO of the Massachusetts Life Sciences Center at the event celebrating the importance of this lab in cutting edge biomedical research.

I think that top hospitals will be building cell manufacturing facilities like Dana Farber. This will make treatment far less draconian than it is today. It doesn't help us now but it will help future patients.
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: 1838
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat May 12, 2018 6:05 pm

Felt awful the past three day - tinglies, haven't felt like eating, fatigue, skin crawling, etc. The latter was due to tree pollen and turning the HEPA filter on helped to clear that up. I'm hoping that the tinglies have peaked but the hands and feet will be picking up as I get into the Xeloda cycle. Everyone knows how it feels; just waiting to get on the other side.
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

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

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

Postby Shana » Sat May 12, 2018 6:09 pm

Hoping you get some relief soon. Pollen is crazy this year out here too, even the cat is sneezing!

You're almost there... the light at the end of the tunnel! :)
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...

NHMike
Posts: 1838
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun May 13, 2018 10:02 am

Neuropathy peaked yesterday.

The other symptoms picked up a bit. This is really late to realize it but I think that the steroids help to suppress some of the other symptoms besides the nausea. Cold sensitivity hit me today (it was in the 40s and overcast). I wore my gloves, winter coat, three shirts and Balaclava to grocery shopping this morning.

While shopping, I had my eye on a bottle of wine that I like, some discounted cold desserts, and raspberry swirl ice cream. Can't eat any of it for at least a week and I'm waiting for a month after the reversal before drinking alcohol.

One thought just struck me: will I have to give myself another month of blood-thinner shots? My knees are already pincushions.
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

User avatar
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 » Sun May 13, 2018 1:35 pm

NHMike wrote:... I'm waiting for a month after the reversal ..

So, do you have a date scheduled for your reversal?

Also, do you know who will be in charge of your follow-up schedule, and whether he/she will have a plan for you?

O Stoma Mia wrote:After your last round of chemo who will be in charge of your comprehensive 5-year survivorship plan? Your oncologist? Your surgeon? Your GP? Hopefully it wil be somebody who cares about your overall QOL over the next 5 years

Somebody needs to be in charge and needs to create a comprehensive Survivorship Care Plan (SCP) for you. Who will that be?

NOTE: The "SCP- Survivorship Care Plan" was featured in a special session in the 2018 Call-on-Congress meeting:

Treatment Summaries and Survivorship Care Plans (TS/SCPs): Symptom Management and Surveillance
Session Presenter:
Andi Dwyer, University of Colorado
Director of Health Promotion, Fight Colorectal Cancer


How are colorectal cancer survivors supposed to manage their medical care after treatment ends? It is recommended by several professional cancer organizations that at completion of treatment, patients receive a summary of what treatments they have had in addition to a detailed plan of ongoing care from their providers. Did you leave with a clear plan? The truth is, a majority of patients are leaving with more confusion than clarity as it relates to their follow up and management post treatment. In this unique breakout session Andi will facilitate a discussion about the importance of survivorship care planning.

Lively, interactive discussions will cover:
• What is a TS/SCP
• The recommended follow-up care for colorectal cancer survivors
• Responsibilities of different providers (oncologist, primary care, etc.)
• Where to go for resources

Ref: https://5xlhc2qz20k3jc6dy3g31xb4-wpengine.netdna-ssl.com/wp-content/uploads/2017/11/2018-ConC-Breakout-Sessions.pdf


Also, ASCO has a list of recommended questions to ask your doctor as you are transitioning from treatment to follow-up. Click on the Reference link at the very bottom to know more.
.
Questions to Ask the Doctor
To learn more about follow-up care for colorectal cancer, consider asking the following questions of your health care team:

What is my risk of recurrence?
What follow-up tests will I need, and how often will I need them?
Who will be coordinating my follow-up care?
If I move or need to switch doctors, how do I make sure to continue my recommended follow-up care schedule?
How often will I need CEA testing? Where will it be done?
How often do I need a CT scan? Where will it be done?
How often do I need a colonoscopy? Who will do it and where will it be done?
How often do I need a rectosigmoidoscopy (rectal cancer only)?
What signs and symptoms should I watch for?
What type of follow-up care do I need beyond five years after treatment?
Where can I find more information about follow-up care?

Ref: https://www.journeyforward.org/follow-care-colorectal-cancer

NHMike
Posts: 1838
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun May 13, 2018 2:44 pm

O Stoma Mia wrote:
NHMike wrote:... I'm waiting for a month after the reversal ..

So, do you have a date scheduled for your reversal?

Also, do you know who will be in charge of your follow-up schedule, and whether he/she will have a plan for you?

O Stoma Mia wrote:After your last round of chemo who will be in charge of your comprehensive 5-year survivorship plan? Your oncologist? Your surgeon? Your GP? Hopefully it wil be somebody who cares about your overall QOL over the next 5 years

Somebody needs to be in charge and needs to create a comprehensive Survivorship Care Plan (SCP) for you. Who will that be?

NOTE: The "SCP- Survivorship Care Plan" was featured in a special session in the 2018 Call-on-Congress meeting:

Treatment Summaries and Survivorship Care Plans (TS/SCPs): Symptom Management and Surveillance
Session Presenter:
Andi Dwyer, University of Colorado
Director of Health Promotion, Fight Colorectal Cancer


How are colorectal cancer survivors supposed to manage their medical care after treatment ends? It is recommended by several professional cancer organizations that at completion of treatment, patients receive a summary of what treatments they have had in addition to a detailed plan of ongoing care from their providers. Did you leave with a clear plan? The truth is, a majority of patients are leaving with more confusion than clarity as it relates to their follow up and management post treatment. In this unique breakout session Andi will facilitate a discussion about the importance of survivorship care planning.

Lively, interactive discussions will cover:
• What is a TS/SCP
• The recommended follow-up care for colorectal cancer survivors
• Responsibilities of different providers (oncologist, primary care, etc.)
• Where to go for resources

Ref: https://5xlhc2qz20k3jc6dy3g31xb4-wpengine.netdna-ssl.com/wp-content/uploads/2017/11/2018-ConC-Breakout-Sessions.pdf


Also, ASCO has a list of recommended questions to ask your doctor as you are transitioning from treatment to follow-up. Click on the Reference link at the very bottom to know more.
.
Questions to Ask the Doctor
To learn more about follow-up care for colorectal cancer, consider asking the following questions of your health care team:

What is my risk of recurrence?
What follow-up tests will I need, and how often will I need them?
Who will be coordinating my follow-up care?
If I move or need to switch doctors, how do I make sure to continue my recommended follow-up care schedule?
How often will I need CEA testing? Where will it be done?
How often do I need a CT scan? Where will it be done?
How often do I need a colonoscopy? Who will do it and where will it be done?
How often do I need a rectosigmoidoscopy (rectal cancer only)?
What signs and symptoms should I watch for?
What type of follow-up care do I need beyond five years after treatment?
Where can I find more information about follow-up care?

Ref: https://www.journeyforward.org/follow-care-colorectal-cancer


I sent a note to my surgeon on my estimate and will send a note to her when I'm done with chemo. I do not have a setup for post treatment care and I have some decisions to make there - mainly whether I want to do it locally or in Boston, and, if in Boston, Dana Farber or Mass General. I'm just working on getting through the next couple of days right now.
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: 1838
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon May 14, 2018 5:09 am

I'm feeling a lot better this morning after getting a lot of sleep and Saturday was indeed the peak for side-effects. Things are still there but rapidly declining (except for hands and feet which will slowly rise). I do need to start figuring out what things will look like on the other side of surgery.
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

Caat55
Posts: 544
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Mon May 14, 2018 10:21 am

NHMike wrote:Neuropathy peaked yesterday.

The other symptoms picked up a bit. This is really late to realize it but I think that the steroids help to suppress some of the other symptoms besides the nausea. Cold sensitivity hit me today (it was in the 40s and overcast). I wore my gloves, winter coat, three shirts and Balaclava to grocery shopping this morning.

While shopping, I had my eye on a bottle of wine that I like, some discounted cold desserts, and raspberry swirl ice cream. Can't eat any of it for at least a week and I'm waiting for a month after the reversal before drinking alcohol.

One thought just struck me: will I have to give myself another month of blood-thinner shots? My knees are already pincushions.


My oncologist and I discussed the reversal last week. My last round ends the end of June. He suggested I hold off on the reversal until at least September, pharmacist from insurance recommended something similar. Both said to give the chemo time to full get out of system, allow body some recovery time before taking on yet another challenge. He suggested an email to surgeon apprising him of where I am in the process, see what needs to be done from his prospective,

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

NHMike
Posts: 1838
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon May 14, 2018 10:31 am

Caat55 wrote:
NHMike wrote:Neuropathy peaked yesterday.

The other symptoms picked up a bit. This is really late to realize it but I think that the steroids help to suppress some of the other symptoms besides the nausea. Cold sensitivity hit me today (it was in the 40s and overcast). I wore my gloves, winter coat, three shirts and Balaclava to grocery shopping this morning.

While shopping, I had my eye on a bottle of wine that I like, some discounted cold desserts, and raspberry swirl ice cream. Can't eat any of it for at least a week and I'm waiting for a month after the reversal before drinking alcohol.

One thought just struck me: will I have to give myself another month of blood-thinner shots? My knees are already pincushions.


My oncologist and I discussed the reversal last week. My last round ends the end of June. He suggested I hold off on the reversal until at least September, pharmacist from insurance recommended something similar. Both said to give the chemo time to full get out of system, allow body some recovery time before taking on yet another challenge. He suggested an email to surgeon apprising him of where I am in the process, see what needs to be done from his prospective,

Susan


I think that the recommended time between the end of neo-adjuvant to surgery is 6-8 weeks but I've seen some research that think that pushing it out may give the radiation more time to work. The time between for me was 7 weeks. I have the feeling that the surgeon is ready to go when I am and probably is thinking four weeks. I think that the surgery is far simpler (surgeon estimated an hour vs 5 hours for the LAR). The difference is the Oxaliplatin though - I don't know how long that takes to clear out of the system. The Xeloda cleared out for me pretty quickly. I felt back to normal two weeks after radiation/chemo.

Part of the complication is in the seams. I went locally for radiation and chemo for convenience but am tempted to go with Dana Farber as I think that they have better facilities for MRI and other testing and scanning. My surgeon is there (well, next door) and the Oncologist would be a specialist; not a generalist. My current oncologist (trained at Dana Farber) is one of two at my local hospital and he's quite busy. Dana Farber is not convenient for me but my mother lives in the area and it would give me more opportunities to visit.

Mass General would be more convenient as it's off of Commuter Rail and my son works there but I'd have to find a doctor and get them acquainted with my case and I don't know that I'm up to doing that.

I will probably send the oncologist at Dana Farber a note asking him what he thinks. It might result in a visit or not. This is a reminder to me of how our medical systems can be disjoint across specialties.
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: 1838
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed May 16, 2018 2:38 pm

I contacted the oncologist at Dana Farber and his recommended schedule was to wait until three months after the end of chemo to do scans to rule out spread, then schedule the reversal; and then he gave me the schedule for scans and exams afterwards. I'm disappointed as I'm rather in a hurry to get rid of the bag and port. This would put surgery somewhere around October. Looks like I might get a lot more use out of the Stealth Belt.
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

Lee
Posts: 5740
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Wed May 16, 2018 2:59 pm

NHMike wrote: . . . I'm disappointed as I'm rather in a hurry to get rid of the bag and port. This would put surgery somewhere around October. . .


I can understand the stoma, butt are they going to take both the bag and the port out at the same time? This was a long time ago (14 yrs ago), butt i had to wait 2 yrs to get my port out. This type of surgery results in scar tissue. If (and God forbid) your cancer does come back, putting a port back in the same location could be a problem. There have been a few people on this board who had this problem and ended up having the port put in on the other side.

I though most doctor would hold off a year or two. Again this was a while ago and lot could have changed.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

NHMike
Posts: 1838
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed May 16, 2018 3:17 pm

Lee wrote:
NHMike wrote: . . . I'm disappointed as I'm rather in a hurry to get rid of the bag and port. This would put surgery somewhere around October. . .


I can understand the stoma, butt are they going to take both the bag and the port out at the same time? This was a long time ago (14 yrs ago), butt i had to wait 2 yrs to get my port out. This type of surgery results in scar tissue. If (and God forbid) your cancer does come back, putting a port back in the same location could be a problem. There have been a few people on this board who had this problem and ended up having the port put in on the other side.

I though most doctor would hold off a year or two. Again this was a while ago and lot could have changed.

Good luck,

Lee


Never really thought about it. The doctor that put in the port did mention that he could do it on the other side. The oncologist didn't say anything about the port (I didn't ask). There are a number of things that I can't or shouldn't do with the port installed and it looks like I may have to wait a considerable time to do them (I've already waited quite some time); or learn how to do them with my left arm.

On the surveillance:

- Oncologist visit every 3 months for 2 years, then every 6 months for three years
- Surgeon will do colonoscopy 6-9 months after reversal and annually for at least two years
- CT scans annually for three years.

I would so much like to hit a 120 MPH serve one of these days.
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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