The Colon Club

Jacques wrote:

Beckster wrote:... Thanks for the info....No, he did not say anything about the Survivorship Care Team. All I know right now is that he said CT every 6 months for 2-3 years and bloodwork every 3 months.
Maybe he is waiting for my appt the end of June. I have a CT and bloodwork scheduled next week. If he doesn't say anything, I am going to ask.

The bloodwork next week is important because it represents the baseline for your 5:year surveillance program. For this reason, it makes sense to have a comprehensive blood test, including all of the major blood panels, plus certain key additional tests, even if you have to pay for some of these tests yourself.

Member rp1954 has written about this many times. Here are some examples of his posts on the value of having good, comprehensive baseline data to work with:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=55285&p=438646#p438646

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52840&p=416346#p416346

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50038&p=380871#p380871

My gastroenterologist sent me for presurgical bloodwork which included:
Alkaline Phosphatase, S, GGT, CEA, aPTT, ALT & AST, Basic Metabolic Panel (7), CBC/Diff Ambiguous Default, Chest Xray and CT with contrast (chest to pelvis.) This was all done before I saw the surgeon. All came back in normal range...

My oncologist orders CBC W/ DIFFERENTIAL and COMPREHENSIVE METABOLIC PANEL every cycle during chemo. Now that chemo is finished, he ordered:

CBC W/ DIFFERENTIAL [LAB3498 Custom]
CEA [LAB57 Custom]
COMPREHENSIVE METABOLIC PANEL
CT ABDOMEN AND PELVIS W IV AND PO CONTRAST
CT CHEST W CONTRAST

What is he missing? Is there anything I should additionally request? I have excellent coverage and it pays for everything.

Beckster

Beckster wrote:...What is he missing? Is there anything I should additionally request? I have excellent coverage and it pays for everything.

Beckster

I'm not an expert on this, but off-hand I would say that what's missing are the tests for systemic inflammation, since they can serve as early warning that a metastasis might be brewing.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57488&p=454046#p454046

Here are some examples of other tumor markers to monitor, and also some systemic inflammation markers: CA19-9, AFP, CA72-4, CA125, LDH, hsCRP, ESR

I routinely monitor CA19-9, LDH, and hsCRP in addition to CEA.

Congrats Beckster! Time to get on with the rest of your life!

kellywin wrote:Congrats Beckster! Time to get on with the rest of your life!

I agree

Beckster wrote:

Jacques wrote:

Beckster wrote:... Thanks for the info....No, he did not say anything about the Survivorship Care Team. All I know right now is that he said CT every 6 months for 2-3 years and bloodwork every 3 months.
Maybe he is waiting for my appt the end of June. I have a CT and bloodwork scheduled next week. If he doesn't say anything, I am going to ask.

The bloodwork next week is important because it represents the baseline for your 5:year surveillance program. For this reason, it makes sense to have a comprehensive blood test, including all of the major blood panels, plus certain key additional tests, even if you have to pay for some of these tests yourself.

Member rp1954 has written about this many times. Here are some examples of his posts on the value of having good, comprehensive baseline data to work with:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=55285&p=438646#p438646

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52840&p=416346#p416346

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50038&p=380871#p380871

My gastroenterologist sent me for presurgical bloodwork which included:
Alkaline Phosphatase, S, GGT, CEA, aPTT, ALT & AST, Basic Metabolic Panel (7), CBC/Diff Ambiguous Default, Chest Xray and CT with contrast (chest to pelvis.) This was all done before I saw the surgeon. All came back in normal range...

My oncologist orders CBC W/ DIFFERENTIAL and COMPREHENSIVE METABOLIC PANEL every cycle during chemo. Now that chemo is finished, he ordered:

CBC W/ DIFFERENTIAL [LAB3498 Custom]
CEA [LAB57 Custom]
COMPREHENSIVE METABOLIC PANEL
CT ABDOMEN AND PELVIS W IV AND PO CONTRAST
CT CHEST W CONTRAST

What is he missing? Is there anything I should additionally request? I have excellent coverage and it pays for everything.

Beckster

I get my vitamin D levels checked every 3 months, and have to supplement with D3 to keep the levels in the suggested range. As radnyc pointed out in a previous thread, it seems like a good idea. http://www.medscape.com/viewarticle/881250

Best wishes with all your follow-ups Beckster.
peanut

Beckster wrote:

Jacques wrote:

Beckster wrote:... Thanks for the info....No, he did not say anything about the Survivorship Care Team. All I know right now is that he said CT every 6 months for 2-3 years and bloodwork every 3 months.
Maybe he is waiting for my appt the end of June. I have a CT and bloodwork scheduled next week. If he doesn't say anything, I am going to ask.

The bloodwork next week is important because it represents the baseline for your 5:year surveillance program. For this reason, it makes sense to have a comprehensive blood test, including all of the major blood panels, plus certain key additional tests, even if you have to pay for some of these tests yourself.

Member rp1954 has written about this many times. Here are some examples of his posts on the value of having good, comprehensive baseline data to work with:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=55285&p=438646#p438646

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52840&p=416346#p416346

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50038&p=380871#p380871

My gastroenterologist sent me for presurgical bloodwork which included:
Alkaline Phosphatase, S, GGT, CEA, aPTT, ALT & AST, Basic Metabolic Panel (7), CBC/Diff Ambiguous Default, Chest Xray and CT with contrast (chest to pelvis.) This was all done before I saw the surgeon. All came back in normal range...

My oncologist orders CBC W/ DIFFERENTIAL and COMPREHENSIVE METABOLIC PANEL every cycle during chemo. Now that chemo is finished, he ordered:

CBC W/ DIFFERENTIAL [LAB3498 Custom]
CEA [LAB57 Custom]
COMPREHENSIVE METABOLIC PANEL
CT ABDOMEN AND PELVIS W IV AND PO CONTRAST
CT CHEST W CONTRAST

What is he missing? Is there anything I should additionally request? I have excellent coverage and it pays for everything.

Beckster

I get my vitamin D levels checked every 3 months, and have to supplement with D3 to keep the levels in the suggested range. As radnyc pointed out in a previous thread, it seems like a good idea. http://www.medscape.com/viewarticle/881250

Best wishes with all your follow-ups Beckster.
peanut

Since you have been under the care of MD Anderson, I would imagine that you would be setting up your five-year surveillance program when you meet with the Survivorship Care Team. I think that it would probably be better to set up a comprehensive followup program.rather than a program that just looks at CEA values and CT scans every 3 or 6 months. That's just my personal opinion.

The main MD Anderson site in Texas has a survivorship course designed specifically for colorectal cancer:

https://www.mdanderson.org/education-training/professional-education/professional-oncology-education/survivorship/colorectal.html

You might find it interesting to look at the outlines of some of the relevant lectures:

https://cms.mdanderson.org/access/content/group/Colorectal%20Cancer%20Survivorship/content/courselist.html

Congratulations!

Beckster wrote:It has been a long six months, but in 2 hours I will take my last dose of Xeloda.
I am now thinking about all the CT scans and bloodwork, especially CEA numbers. Scanxiety is now setting in.....but this forum will help me through it! Ct scans every 6 months and bloodwork every 3 months. My oncologist said I have an excellent prognosis, but I reminded him that if something were to happen, it would happen to me!

Congrats, Beckster!
I took my last dose of Xeloda back on October of last year (2016), and still remember how great - and SCARY - it felt to know my treatment was done. How I had looked forward to that day! And then how suddenly frightening it felt to no longer be actively doing something. <:- ) We all still get scanxiety. I doubt it will ever go away. Try to enjoy and let your body and mind have some rest and time to regenerate. No matter what the doctors tell you, your body will definitely still feel the effects of chemo for a bit. Take time for you. Do all those things you wanted to do but might not have been able to. Kick up them heels.

Hugs and Prayers,
Tracy

WriterGirl1969 wrote:. . . took my last dose of Xeloda back on October of last year (2016) and . . . how suddenly frightening it felt to no longer be actively doing something. <:-) We all still get scanxiety

How true. But you may get used to that one too. Believe me, it get's easier after a while
Best wishes, L