The Colon Club

Hello everyone!

Today is my mother's first CT since her initial diagnosis in the ER. We are both so nervous! she has had 5 rounds of folriri + avastin and has been tolerating it okay. She did have to add a BP medicine due to the Avastin. Her starting CEA was 171 right before chemo, now it is 25.1. It's that nasty mets to the peritoneal that bothers me because it wasn't found on the initial CT but in surgery.

She sees the oncologist on Monday for the CT results. Is there any recommendations of what to expect or what to ask the oncologist on Monday? Will she show us the images or just verbally go over it with us?

Good Luck and hope the scan shows good response the treatment. Hopefully her CEA is a good marker for her since it has gone done so much. My mom's Onco always asked if we wanted to see the actual scan or just be told what was in it. She also has a health portal that her tests are uploaded to and are often there prior to the appointment so we are able to review and form our questions based off that. Her Onco would review the test results and how she is feeling and make recommendations for future treatment. Our biggest questions were always why X change and what are all the options and what is the goal of whatever change is being made, plus when is the next round of blood work and scans. He is also always available for questions if we think of something later, so make sure you know how to contact him between appointments if anything comes up. Please keep us posted!

SweetC80 wrote:Good Luck and hope the scan shows good response the treatment. Hopefully her CEA is a good marker for her since it has gone done so much. My mom's Onco always asked if we wanted to see the actual scan or just be told what was in it. She also has a health portal that her tests are uploaded to and are often there prior to the appointment so we are able to review and form our questions based off that. Her Onco would review the test results and how she is feeling and make recommendations for future treatment. Our biggest questions were always why X change and what are all the options and what is the goal of whatever change is being made, plus when is the next round of blood work and scans. He is also always available for questions if we think of something later, so make sure you know how to contact him between appointments if anything comes up. Please keep us posted!

i like the wa your mom’s doctor treat patient. May I ask how you found this oncologist? I would like to switch to another doctor, and already did a few 2nd opinion consul. Still have trouble to find a right one.

ilovemyfrenchie wrote:Hello everyone!

Today is my mother's first CT since her initial diagnosis in the ER. We are both so nervous! she has had 5 rounds of folriri + avastin and has been tolerating it okay. She did have to add a BP medicine due to the Avastin. Her starting CEA was 171 right before chemo, now it is 25.1. It's that nasty mets to the peritoneal that bothers me because it wasn't found on the initial CT but in surgery.

She sees the oncologist on Monday for the CT results. Is there any recommendations of what to expect or what to ask the oncologist on Monday? Will she show us the images or just verbally go over it with us?

My oncologist just explains the results of the CT to me. You can always ask to see the images if hers doesn't show them to you. Good luck!

I don't understand why you would be having a CT as surveillance when CTs aren't able to detect metastases to the peritoneum area. If I recall correctly, MRIs do.

rachel2017 wrote:

SweetC80 wrote:Good Luck and hope the scan shows good response the treatment. Hopefully her CEA is a good marker for her since it has gone done so much. My mom's Onco always asked if we wanted to see the actual scan or just be told what was in it. She also has a health portal that her tests are uploaded to and are often there prior to the appointment so we are able to review and form our questions based off that. Her Onco would review the test results and how she is feeling and make recommendations for future treatment. Our biggest questions were always why X change and what are all the options and what is the goal of whatever change is being made, plus when is the next round of blood work and scans. He is also always available for questions if we think of something later, so make sure you know how to contact him between appointments if anything comes up. Please keep us posted!

i like the wa your mom’s doctor treat patient. May I ask how you found this oncologist? I would like to switch to another doctor, and already did a few 2nd opinion consul. Still have trouble to find a right one.

We are fortunate enough to live close to a higher ranking cancer center. My husband actually works in the IT department at the cancer center prior to my mother's diagnosis and is familiar with many doctors and nurses. Her Onco was just assigned to her from her colorectal surgeon, but through talking w/ my husband and his coworkers who are vary familiar with all the doctors it's agreed that she got a good one. Plus he was able to get her marked as a "VIP" so we can have her records reviewed by the powers that be to confirm they agree with treatment decisions (we've used this privilege twice) We have always trusted him and he is always open to discussion about options. I read here and online different options for stage IV CRC patients and he helps us understand why he does and doesn't want (or can't) pursue certain treatments or types of chemo.

mpbser wrote:I don't understand why you would be having a CT as surveillance when CTs aren't able to detect metastases to the peritoneum area. If I recall correctly, MRIs do.

When I went to the ER for the pain and distention in my belly, they did a CT scan and saw the seeding on my omentum and caking on my liver.

I've had one PET scan before starting chemo and 2 CT scans after starting. They do pick up peritoneal cancer. I've not had an MRI for the cancer.

SweetC80 wrote:

rachel2017 wrote:

SweetC80 wrote:Good Luck and hope the scan shows good response the treatment. Hopefully her CEA is a good marker for her since it has gone done so much. My mom's Onco always asked if we wanted to see the actual scan or just be told what was in it. She also has a health portal that her tests are uploaded to and are often there prior to the appointment so we are able to review and form our questions based off that. Her Onco would review the test results and how she is feeling and make recommendations for future treatment. Our biggest questions were always why X change and what are all the options and what is the goal of whatever change is being made, plus when is the next round of blood work and scans. He is also always available for questions if we think of something later, so make sure you know how to contact him between appointments if anything comes up. Please keep us posted!

i like the wa your mom’s doctor treat patient. May I ask how you found this oncologist? I would like to switch to another doctor, and already did a few 2nd opinion consul. Still have trouble to find a right one.

We are fortunate enough to live close to a higher ranking cancer center. My husband actually works in the IT department at the cancer center prior to my mother's diagnosis and is familiar with many doctors and nurses. Her Onco was just assigned to her from her colorectal surgeon, but through talking w/ my husband and his coworkers who are vary familiar with all the doctors it's

agreed that she got a good one. Plus he was able to get her marked as a "VIP" so we can have her records reviewed by the powers that be to confirm they agree with treatment decisions (we've used this privilege twice) We have always trusted him and he is always open to discussion about options. I read here and online different options for stage IV CRC patients and he helps us understand why he does and doesn't want (or can't) pursue certain treatments or types of chemo.

Your mom is lucky to have the right doctor. We live in metropolitan Washington DC area. Went to 3 local cancer centers. Still have hard time to find the right doctor

[/quote]We are fortunate enough to live close to a higher ranking cancer center. My husband actually works in the IT department at the cancer center prior to my mother's diagnosis and is familiar with many doctors and nurses. Her Onco was just assigned to her from her colorectal surgeon, but through talking w/ my husband and his coworkers who are vary familiar with all the doctors it's

agreed that she got a good one. Plus he was able to get her marked as a "VIP" so we can have her records reviewed by the powers that be to confirm they agree with treatment decisions (we've used this privilege twice) We have always trusted him and he is always open to discussion about options. I read here and online different options for stage IV CRC patients and he helps us understand why he does and doesn't want (or can't) pursue certain treatments or types of chemo.[/quote]


Your mom is lucky to have the right doctor. We live in metropolitan Washington DC area. Went to 3 local cancer centers. Still have hard time to find the right doctor[/quote]

Do you have the option of traveling for a second opinion, possibly Memorial Sloan Kettering Cancer Center in NYC or U Penn in Philly. Are you close and have tried John Hopkins? So much luck to you <3

SweetC80 wrote:

We are fortunate enough to live close to a higher ranking cancer center. My husband actually works in the IT department at the cancer center prior to my mother's diagnosis and is familiar with many doctors and nurses. Her Onco was just assigned to her from her colorectal surgeon, but through talking w/ my husband and his coworkers who are vary familiar with all the doctors it's

agreed that she got a good one. Plus he was able to get her marked as a "VIP" so we can have her records reviewed by the powers that be to confirm they agree with treatment decisions (we've used this privilege twice) We have always trusted him and he is always open to discussion about options. I read here and online different options for stage IV CRC patients and he helps us understand why he does and doesn't want (or can't) pursue certain treatments or types of chemo.[/quote]


Your mom is lucky to have the right doctor. We live in metropolitan Washington DC area. Went to 3 local cancer centers. Still have hard time to find the right doctor[/quote]

Do you have the option of traveling for a second opinion, possibly Memorial Sloan Kettering Cancer Center in NYC or U Penn in Philly. Are you close and have tried John Hopkins? So much luck to you <3[/quote]
She is in John Hopkins now. We need to go to other place

Rachel2017 -

Check out Dr. Cheryl Aylesworth in Silver Spring. She is my oncologist and is wonderful. Head of clinical trials at Holy Cross, very well connected at NIH/NCI. I could not imagine a better oncologist. Not sure where in DC you are, but it is at least worth talking with her.

Take care,

betsydoglover wrote:Rachel2017 -

Check out Dr. Cheryl Aylesworth in Silver Spring. She is my oncologist and is wonderful. Head of clinical trials at Holy Cross, very well connected at NIH/NCI. I could not imagine a better oncologist. Not sure where in DC you are, but it is at least worth talking with her.

Take care,

Betsy,
We live in Rockville. Thanks a lot for the information. Will try to schedule the appt soon. Do you have any other recommendations?

Thank you SweetC80 and everyone else for your reply and well wishes! My mom got her CT results back today and the doctor said she's responding really well to the chemo and her liver mets shrunk significantly. Unfortunately the results doesn't upload on her patient portal until 4 days later and still aren't up now.

Mpbser, I asked her oncologist the same thing because I was curious why my mom never had a PET or MRI done but she said she doesn't do MRIs because she already knows what she is looking for (the mets) and that the CTs will show it.

Robino1, just curious how did you know your peritoneal mets were shrinking? My mothers weren't found until the surgery for her colostomy and I asked the oncologist about it during her CT results today but she said if the liver mets shrunk the peritoneal mets definitely shrunk too. Confused

ilovemyfrenchie wrote:Thank you SweetC80 and everyone else for your reply and well wishes! My mom got her CT results back today and the doctor said she's responding really well to the chemo and her liver mets shrunk significantly. Unfortunately the results doesn't upload on her patient portal until 4 days later and still aren't up now.

Mpbser, I asked her oncologist the same thing because I was curious why my mom never had a PET or MRI done but she said she doesn't do MRIs because she already knows what she is looking for (the mets) and that the CTs will show it.

Robino1, just curious how did you know your peritoneal mets were shrinking? My mothers weren't found until the surgery for her colostomy and I asked the oncologist about it during her CT results today but she said if the liver mets shrunk the peritoneal mets definitely shrunk too. Confused

Just going by what my oncologists is getting from the report. I had significant seeding so maybe they are disappearing? The seeding could definitely be seen in the CT scan.

Good question and one I will try to remember to ask my oncologist.

I hope your mother gets good scans!*hugs*