Tetrathiomolybdate

[beach sunrise]

TGIF!!!
I am wondering if anyone is on the Tetrathiomolybdate (TM) Program? If so, what is your experience?

[Green Tea]

Tetrathiomolybdate (TM)

[beach sunrise]

Thank you green tea! I did read that chain while researching.
There are about 60 CRC people so far on the TM with the onc I'm under now so we will see how it works for me. I will update.

[Green Tea]

Thank you green tea! I did read that chain while researching.
There are about 60 CRC people so far on the TM with the onc I'm under now so we will see how it works for me. I will update.

Hi beach sunrise -

I understand that you will now be starting the Tetrathiomolybdate(TM) therapy. Would you be able to explain the reasoning behind your decision to try this? How will you know if it works or not?

Here is a recent article summarising some of the uses of TM. Does the article cover your reason for trying this approach?

Current Biomedical Use of Copper Chelation Therapy (2020)
https://pubmed.ncbi.nlm.nih.gov/32041110/

[beach sunrise]

Yes, I am looking for any and every cancer pathway to shut it down and my copper was high in May but came down half just by culling foods and stuff. This drug will help lower it more.

[Green Tea]

Another question: Have you ever had a consult with a hepato-biliary expert to get an expert opinion on whether or not you have a liver problem?

There are several different kinds of liver problems that can occur:

https://en.wikipedia.org/wiki/List_of_hepato-biliary_diseases

[beach sunrise]

That is something to consider.
My liver counts have always been good throughout 1 1/2 yrs of chemo except for after round 7 folfox when they climbed to 100. I refused any more chemo and requested a scan to make sure my liver was not damaged. After a week liver panels were back to normal.
One of my docs at the hospital is a hepatology specialist so I might ask him about things. Thanks!

[Green Tea]

Another question: Have you ever had a consult with a hepato-biliary expert to get an expert opinion on whether or not you have a liver problem?

There are several different kinds of liver problems that can occur:

https://en.wikipedia.org/wiki/List_of_hepato-biliary_diseases

BUMP: Bumping this up to ask again whether or not you have had a recent consult with a liver expert in order to arrive at a proper diagnosis about your liver, or about your general hepato-biliary system.

From the scan report extract that you recently posted the radiologist mentioned "BILIARY TRACT: Mild intrahepatic and moderate extrahepatic biliary ductal dilatation that tapers to normal in the pancreas head". Maybe there is something going on in and around the liver, for example in the gall bladder or in the pancreas. Which reminds me, does your bloodwork contain the test for the pancreatic tumor marker CA-19.9 ? If so, is it normal? And what about a possible hypothyroidism connection?

Another question: Has a liver expert been able to rule out any of the several benign liver-related causes of elevated CEA? There are several on the list:

Carcino Embryonic Antigen (CEA) - False Positives

•Inflammatory Bowel Disease.
•Pancreatitis.
•Liver disease (e.g., NASH : Non Alcoholic Steatosis Hepatitis - "fatty liver disease" )
•Tobacco use can lead to elevated CEA levels. (CEA is elevated in 19% of smokers and only 3% of the non-smoking healthy population.)
•Diverticulitis.
•Hepatitis.
•Peptic ulcers.
•Hypothyroidism.
•Cirrhosis of the liver.
•COPD.
•Lung infection.
•Pleural effusions.
•Biliary obstruction.
•Treatment with oral 5-FU.
•High serum glutamic-pyruvic transaminase (sGPT) levels.

Reference: http://www.kantrowitz.com/cancerpoints/

Chemotherapy Dosing in the Setting of Liver Dysfunction
https://www.cancernetwork.com/oncology-journal/chemotherapy-dosing-setting-liver-dysfunction
.
Hepatotoxicity Secondary to Chemotherapy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4521265/

[beach sunrise]

Good morning Green Tea, we went over the scan and my surgeon didn't see anything, he said they note anything and everything but my liver looks great and healthy. I asked for the referral, his nurse will do that for me then they will contact me.
I do have scattered diverticulitis, had it for yrs.
ca1999 was taken end of Sept and came back at 7. It ranges between 5-7 (Its time to recheck). Billi is low normal. Liver panels are normal. AFP was 9 (time to recheck this one also).
ALP was high this time at 140. A/G ratio is high normal. GGT was high at 60 I believe.
Appt with endo tomorrow to check out my thyroid. Nodules on left side and left side is enlarged.
CT scan again in March to check on the lymph node and shotty para aortic nodes (2). They are tiny but there. Never noted before but the node in the lung has been there the whole time when he looked back on all previous scans. I've been researching surgeons to take out the para aortic nodes. My surgeon didn't seem to confident he could offer it as he used the word "caution" when talking about it. So, Idk.

[Green Tea]

...
Appt with endo tomorrow to check out my thyroid. Nodules on left side and left side is enlarged...

Good luck on your appointment today with the endocrinologist. Let us know what you find out.

If you're interested, you could check to see if the endocrinologist has a Board Certification.  To do this, access certificationmatters.org website using the link below, enter the doctor's last name and state, select "Endocrinology and Metabolism" as the specialty then submit the request.  If he/she has this certification then it should show up in the results. If not, maybe there is a certification in a different area, such as Internal Medicine.

https://www.certificationmatters.org/find-my-doctor/

[beach sunrise]

Had appt. Won't know results of ultrasound for about 2wks.
Not crazy about the endo dr. Read a few reviews before appt and ya they were spot on, very SOC, pays no attention to the whole picture. He told me to stay away from alt drs and sites like this one, lol...How did he know I only got to ask 2 questions then he cut me off.
Will not see him again.

[beach sunrise]

Thyroid results are in. I need a biopsy of a nodule on the left side.
My CR surgeon asked me if I talked with the endo about thyroid affecting cea. I told him no we didn't get that far into a discussion.
As for liver, if different/still dilated 3 mths from now will do an ultrasound.
Thats all I have to report at this time.

Merry Christmas everyone!

[Green Tea]

Thyroid results are in. I need a biopsy of a nodule on the left side.
My CR surgeon asked me if I talked with the endo about thyroid affecting cea. I told him no we didn't get that far into a discussion.
As for liver, if different/still dilated 3 mths from now will do an ultrasound.
Thats all I have to report at this time.

Merry Christmas everyone!

So, it has been almost 3 months now. Anything new to report in these areas?

[beach sunrise]

Yes, had scan then appt with surgeon today to go over it.
Port is against my thyroid and causing inflammation and stenosis in the main vein where the catheter is, so it is coming out next week.
The biliary tract intra-extra dilation has resolved.
No shotty lymph nodes seen.
Still have the 3mm one in the lung that has been there since dx. No change.
All organs are normal.
No signs of metastatic disease.
BUTTT CEA is at 10.2

[claudine]

It looks like your CEA is always in the upper single digits/low 10s range, maybe that's normal-ish for you??