Postby H is for Hawk » Tue Jan 19, 2016 7:05 pm
Hi lpas,
Thanks for the information about tetrathiomolybdate (TTM) for BRAF mutation patients, and the use of acetyl-l-carnitine to heal peripheral neuropathy last month. I think most of us are aware of the advice to avoid copper containing multivitamins because copper enhances micro blood vessel formation, potentially to tumors. The article in Nature magazine is especially interesting because it links copper directly to the MAPK signalling pathway to promote cancer in BRAF patients. I am going to see if my integrative oncologist will help me get on the copper chelation protocol. There is some work involved though, getting a baseline copper level, then gradually increasing the tetrathiomolybdate dose to get to a 20% of baseline copper level in the bloodstream.
Hello Tim,
Sounds like you are experiencing the hyperkeratinization side effects of the Vectibix / Tafinlar / Mekinist chemotherapy too. New skin cells are rapidly proliferating on the skin surface and inside the pores. The pores eventually clog and prevent sebum (skin oil) from exiting, resulting in infection and inflammation.
I had a CT scan in November that showed my liver and pleural lining mets have dissapeared, but a new suspicious 3 cm calcified soft tissue mass was identified on the pelvic muscle. In December, a PET scan revealed it increased in size to 3.6 cm with a SUV of 3. It is in an odd location, on top of the pelvic muscle, under some other muscles, and it can't be core needle or surgically biopsied, nor cryo-ablated. The oncologists are stumped, it could be a metastatic, or could be inflammation. I can only watch and wait; a CT scan next month may be more definitive.
CEA biomarkers were never a reliable marker for me, there were at normal levels just before my initial surgery and during disease progression earlier this year. The CA 19-9 test was more useful. This started out at 6000 at the start of the triplet chemotherapy and came down rapidly to 500, but has risen to 2500 last month.
There are three clinical trials here in the States (New York City, Tennessee and Baltimore) that use epigenetic compounds to attempt to change MSS tumors to act more like MSI ones when checkpoint inhibitors are infused. I suspect the logistics of have to relocate to the US for a few months is not practical. PM me if you want the clinical trial details.
A heads up to you about the Tafinlar capsules and Mekinist pills. The package insert indicates there is a 10% chance of experiencing heart damage, so Novartis recommends a echocardiogram at the start of therapy and every three months there after. There also is a risk of new primary malignancies - 9% basal cell skin cancer, 2 % melanoma, and 1.8% risk of developing pancreatic, head & neck or brain cancer. You are probably aware of the dose timing requirements, ingestion 1 hour before meals and two hours after meals because the fat in foods interfere with the absorption.
H is for Hawk (57)
10/14 L. hemi-colectomy 3 x 4 x 1 cm tumor, 13/14 lymph nodes pos. pT4a N2B M0 stage 3 MSS
11/14 - 4/15 12x FOLFOX
5/15 PET scan: 2.5 x 1.5 cm l. colon lesion, peri surface lesion SUV 2.4, adenocar., KRAS wd, BRAF V600E mut
6/15 HIPEC
9/15 Pleural lining & liver mets, CA 19-9: 6000
10/15 Vectibix Tafinlar Mekinist
11/15 1500
1/16 200
2/16 100, add Lentinan
3/16 122
6/16 4500
7/16 20,000, CT scan - three new liver mets
8/16 6700, FOLFIRI
9/16 4900, CT scan - two new liver mets
10/16 2255 vinorelbine