The Colon Club

Hello. My mum has been treating with Folfox with Avastin since Aug last year as there are multiple nodules in her lungs after surgery. Her CEA has been steady since the use of Folfox and Avastin though the nodules do not go away.

Last week we took her to a trip to Japan (we live in HK). To prepare this trip, my mum has stopped chemo from mid-Jan. Last chemo of her is on 18 to 20 of Jan. After the trip, she went back to hospital for blood work and the CEA rose to 3.4. We know it is still within the normal range that we should have nth to worry about, but the truth is her CEA rose after 1 month break and it seems that she has to be chemo for life in this trend.

She has now finished the 9 rounds of chemo and started to develop serious allergic reaction to oxa. The doctor said one more allergic response then she has to drop Folfox. We are rely worried coz folfiri has a side effect of diarrhea while my mum has stoma which folfiri will trouble her so much forseeably.

We always want to get rid of the nodules in her lungs but most of the doctors I met told us we don't have any options other then chemo. There is no laser surgery for my mum.

Any comments would be appreciated. Thank you so much.

This was always the hardest part for me, the unknown what does every little test mean. My mom's CEA would fluctuate up and down a little and when there was no real change, but the times there were growth or spreading we saw large jumps in her numbers. Everybody is different in how much CEA is even a marker for them. Does your mom have any scans coming up? My mom's onco always reinforced that CEA was a guide not a diagnostic tool and only imagining could really show him what was going on. I hope her lung mets are still stable.

Given the economics, frequent longevity, and improved QOL, I would look into ADAPT style protocols for mCRC - capecitabine (or UFT-LV) + celecoxib; with the easy adjuncts like PSK, EGCG, quercetin and curcumin. There are lots of others that can be additive and that we have used with a low total cost for a high quality of life result.

Theoretically IV vitamin C should reduce the VEGF-A consumption of Avastin for RAS mutant CRC that often expresses serum CA199 over 19 before surgery/chemo/rad tx, and LDH over 200. Similarly on CA199 and LDH, cimetidine may improve problems associated with mutants, but by different mechanisms. When I say "theoretically", my mCRC wife has never had to use Avastin but she does use a lot of IV vitamin C and other adjuncts too.

Your mum's CEA series is concerning as series with a nadir but still immature for statistics and pattern matching. If it is any solace, the doubling time is slower than many mCRC cases. There will be some information in the rest of your mom's bloodwork and more is possible with expanded panels.

SweetC80 wrote:This was always the hardest part for me, the unknown what does every little test mean. My mom's CEA would fluctuate up and down a little and when there was no real change, but the times there were growth or spreading we saw large jumps in her numbers. Everybody is different in how much CEA is even a marker for them. Does your mom have any scans coming up? My mom's onco always reinforced that CEA was a guide not a diagnostic tool and only imagining could really show him what was going on. I hope her lung mets are still stable.

Thank you for your reply. That is what exactly the onco told us that we have no need to worry as the CEA is still within the normal range. My mum has a ct scan on coming May. We will just see how her CEA goes next week.

rp1954 wrote:Given the economics, frequent longevity, and improved QOL, I would look into ADAPT style protocols for mCRC - capecitabine (or UFT-LV) + celecoxib; with the easy adjuncts like PSK, EGCG, quercetin and curcumin. There are lots of others that can be additive and that we have used with a low total cost for a high quality of life result.

Theoretically IV vitamin C should reduce the VEGF-A consumption of Avastin for RAS mutant CRC that often expresses serum CA199 over 19 before surgery/chemo/rad tx, and LDH over 200. Similarly on CA199 and LDH, cimetidine may improve problems associated with mutants, but by different mechanisms. When I say "theoretically", my mCRC wife has never had to use Avastin but we do use a lot of other adjuncts too.

Your mum's CEA series is concerning as series with a nadir but still immature for statistics and pattern matching. If it is any solace, the doubling time is slower than many mCRC cases. There will be some information in the rest of your mom's bloodwork and more is possible with expanded panels.

Thank you for your advice. I suspect the combination of drugs in HK is a bit different compare to US, but we will see how it goes.

Apart from the advice, do you find my mum's CEA is worrying even though it is growing slowly? Do the word "Nadir" imply chemo for life or met?

Mercy110 wrote:...suspect the combination of drugs in HK is a bit different compare to US, but we will see how it goes.

Some drug regimens are pretty standard, the different combinations are what you choose instead of merely accept. You also have the tegafur drug, TS-1, and maybe UFT (tegafur uracil) that aren't available in the US. We chose UFT-LV over Xeloda for a personalized treatment with mild drugs and nutraceuticals, reasonable cost, better result, better quality of life.

Apart from the advice, do you find my mum's CEA is worrying even though it is growing slowly? Do the word "Nadir" imply chemo for life or met?

Nadir is the low point in the curve, and hypothetically could occur with an operable met too. Concerned, we react on nutraceuticals about that level of change to shift immune, chemo treatment back into a more responsive range.

Stage IV inoperable implies chemo for life; the question is which chemo.

There are papers that show better results with milder combinations. These treatments are considered experimental, developmental and/or nonstandard. They are so mild and were so promising, we chose a "virtual trials" route for unique combinations that can be done at home (take more pills). You even have the advantage of presumably reading and writing chinese for shopping the mainland for wider choices and lower prices.

rp1954 wrote:

Mercy110 wrote:...suspect the combination of drugs in HK is a bit different compare to US, but we will see how it goes.

Some drug regimens are pretty standard, the different combinations are what you choose instead of merely accept. You also have the tegafur drug, TS-1, and maybe UFT (tegafur uracil) that aren't available in the US. We chose UFT-LV over Xeloda for a personalized treatment with mild drugs and nutraceuticals, reasonable cost, better result, better quality of life.

Apart from the advice, do you find my mum's CEA is worrying even though it is growing slowly? Do the word "Nadir" imply chemo for life or met?

Nadir is the low point in the curve, and hypothetically could occur with an operable met too. Concerned, we react on nutraceuticals about that level of change to shift immune, chemo treatment back into a more responsive range.

Stage IV inoperable implies chemo for life; the question is which chemo.

There are papers that show better results with milder combinations. These treatments are considered experimental, developmental and/or nonstandard. They are so mild and were so promising, we chose a "virtual trials" route for unique combinations that can be done at home (take more pills). You even have the advantage of presumably reading and writing chinese for shopping the mainland for wider choices and lower prices.

Thank you for replying again. My mum has stopped chemo for 1month before the CEA test, so we wonder if this minor increase of CEA is normal...
For Chinese meds, we are not so sure as HK's medication seems much promising, so we never decide to take any risks going to China for treatment.

My CEA was 2.7 at diagnosis, 1.9 midway through neo-adjuvant, 1.8 after neo-adjuvant, 1.4 before starting adjuvant, 1.7 before second infusion, 2.2 before third infusion and 2.6 before fourth infusion (today). Under 3.8 is considered normal. Everyone tells me not to worry. But I'll worry a bit more if it jumps another 0.4 before the next infusion.

So I definitely hear you on rising CEA.

My CEA was 1. while I still had a malignant colorectal tumor, so my CEA marker is not a good indicator. Since surgery, the last two blood tests have been 0.8, so not much different. I won't be using that blood marker as an indicator for me.