The Colon Club

Update: CT scan got pushed back 1 1/2 weeks due to contrast issues so scan is tomorrow. We will find out if hammering lung node with vitamin D3, vitamin C, NAC, Bromalain, ect helps the SUV go down. SUV was 1.3.
Lung surgeon wasn't to happy to hear I contacted Germany about Rolles. Whatever!
I will pick up CD of PET/CT scan tomorrow to send to Germany. I really hope I will be a candidate considering USA options not as good % wise and risk/benefit.
Signatera still showing neg. Will redo on the 15th to make sure. I asked about the test not being good at detecting cancer with lung mets maybe. Answer was they will get back with me. Haven't got a response yet.

beach sunrise wrote:... Sognatera still showing neg. Will redo on the 15th to make sure. I asked about the test not being good at detecting cancer with lung mets maybe. Answer was they will get back with me. Haven't got a response yet.

Did you mean Signatera™ ?

Yes, Signatera. Goodness
I wonder if it picks up on CRC lung mets? I am showing SUV of 1.3 on a 5mm lung node, CEA has risen but Signatera shows neg.

According to my Onc, it is not good for lung Mets. Another crc patient of theirs was negative on Signatera but showed lung Mets on CT. She stopped sending mine after that.

Thank you, Madmed!
Do you have the study papers or can you get them from your onc?

I'll ask her for more details or papers. In this particular case, it was another patient of hers that had a lung recurrence while still negative on Signatera.
There seems to be indication out there:
https://ascopubs.org/doi/abs/10.1200/PO ... nalCode=po

CONCLUSION
Patients with lung-only and peritoneum-only metastatic disease have significantly lower levels of ctDNA, suggesting decreased clinical sensitivity for subclonal variants.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9390824/

From a clinical standpoint, ctDNA detection can vary by stage, metastatic burden, and the site of metastases.2-5 Kagawa et al6 observed that CRC patients with liver metastases were associated with increased ctDNA detection rates compared with the patients with lung and peritoneal metastases.

Thank you so much, Madmed!
PET/CT scan is off the Germany.
Now we wait to see if I am a candidate!

I hope you get good news and that you're a candidate. *hugs*

Beachsunrise—did Germany give you any indication how long the evaluation would take them? We are also waiting to here from them about YAG surgery and wondering how long the wait will be.

Hi Bpaint, not sure.
Just sent everything last week.
Sent 3 1/2 yrs of medical records, 3 1/2 yrs of bloodwork spreadsheet. 2 scans.
And it is the holidays.
I will let you know when I hear from them and pllease let me know from your side too.

Well, my husband isn’t a candidate. I got this response from Dr Kern this morning:

“Thanks for sending us the CT scans! Unfortunately, there are too many nodules in both lungs, many very small ones and centrally located; that means that it is very unlikely that we can detect and resect them all completely. Laser metastasectomy is only useful and makes sense if a complete resection of all nodules can be accomplished; otherwise there is no bebefit for survival of the patient.”

I hope you get better news!

I am so so sorry your husband was not a candidate. If he had a centrally located node then I might be in same boat as mine says centrally located.
Signatera is not picking up the lung met. It is neg again.
Lab corp lost my blood draw so having go redo tomorrow. Took them 3 weeks to let anyone know.

One of my labs are in, just the general order.
CEA is down 5 more points to 17.7 from 26.x (Oct result), all else looks pretty good. I started back on chronomodulated xeloda dosing about 2 weeks ago. Hammering hard on lung nodes with supplements for over a month now.
I have no recent labs to compare it to as my last one was lost so hopefully it stays moving in the right direction with chronomodulated and a variety of up dosing dupplements.
Still no word from Germany. I did send them 3 1/2 yrs worth of blood data, scans, reports.

Appt with onc. His take on all the lung stuff is he is not convinced its CRC cancer still, it could be a new primary (lung cancer maybe). The ground glass lucincy could be inflammation/infection also instead of cancer. Whew
Lung surgeon wants SBRT asap but onc wants to wait until another scan in March to see if these 5mm nodes have grown.
He mentioned again tapering off xeloda and I said NO NO NO.
He said he's never had a patient so unusual. I tried to explain again about my beat down protocol ADAPT+++.
Still no word from Germany. I sent an email inquiring but haven't gotten repsonse back yet.
Consult with Boyd next week.

Reply from Germany was they have not received packet. It is somewhere in the nets blackhole I guess. So sent hard copies thru DHL on the 13th. They will receive it Monday. So, another wait. Hopefully decision can be made fast.
Consults here have all been pretty much the same so far. If it is in fact a met or two, indeterminate at this time, chemo should be changed and see what happens. One consult offered SBRT and a different chemo plan. I am not about all that right now. Hopefully Germany has what I am looking for. If not a Rolles candidate I will most likely go with SBRT but not an added heavier chemo plan.
It's overwhelming at times with everything.