High Dose Vitamin C Questions

[rp1954]

What is her CA199, LDH, HgbA1C hsCRP or ESR ? The more blood data you have, the better you can tune these things.

Do I ask her doctor to requisition these specific levels? I presume they aren't common and I should ask the PA when we go in today for a lab order? She has her 4th treatment today and starts Avastin.

All are commonly available lab panels, but not necessarily for standard econobox monitoring of CRC, typically done with a Chem12 or 14 metabolic panel. My parent 35 years ago got a Chem25 with most of this data for mCRC, so much for clinical progress. CRC researchers will use more panels, Dr Kemany will use more panels for HAI, alternative MDs will use more panels. Extra cancer markers ( and "distant panels") are where the fights usually start - it is often easiest to just pay for the first set of some panels then insist on monitoring anomalies (you might have to add or change drs).

How did you get the lab tissue results? Is that something I can ask for? Would they be in the genetics report I just got?

CA199 and/or CSLEX1 immunohistochemistry in your current reports, no. The pathologists are typically resistant to less standard or outside requests without a known requesting dr with enough stroke. I went to a private university for a number of markers on a research basis and made a generous contribution; this was slow and not consumer friendly. One CT person here got their CA199 tissue done for immunohistochemistry by their doctor because their peak CEA before surgery was too low to monitor effectively, and CA199 was likely a marker because of Kras mutant. Good insurance paid, too.

This is an area that needs to reworked so others can get real pathology service on tumor tissue for CA199+CSLEX1. The payoffs would be targetable, perioperative chemo during the 6 week gaps around surgery and targetable, mild cleanup/maintenance chemo options longer term.

[FightCRC]

A couple of followup points:

-- Sorry to say, there are no more Codmans left, not even for Dr. Kemeny's trial.

-- We consulted with both City of Hope and MSK for the HAI pump last year. Our first choice was Dr. Kemeny and MSK. If she didn't accept us as patients, our backup was City of Hope. Can further elaborate it you like.

-- I would pay very close attention to what rp1954 says. You don't have to fully understand, you don't have to agree 100% with what he posts...but needs to be acknowledged that his wife has survived with Stage IV CRC since 2010. It's unlikely due solely to luck.

I would love to know more about City of Hope. We've already had a very high level conversation with Dr. Kemeny's office in early January. She wants us to do several treatments and then a scan and report back to her. If pumps aren't available is City of Hope a good alternative?

The doctor you'll want to see at City of Hope is Dr. Yuman Fong. He's the Chair of Dept. of Surgery at CoH. But more importantly, he was previously at MSK for 20+ years, where he worked hand-in-hand with Dr. Kemeny on HAI. He co-authored their papers, and has also implanted more pumps than anyone. When I was researching doctors, his name elicited the most awe/respect from his peers. On top of that, he's got an incredible manner. We walked out of our consult completely won over.

So why did we choose to go to MSK? Because while Dr. Fong may be the best liver surgeon in the world, we weren't resectable yet. Therefore, in our minds, the medical oncologist was more crucial to our situation. And for HAI treatment, no one knows it like Dr. Kemeny.

In some HAI programs, the surgical oncologist manages the pump chemo, and if that was the case at CoH, we might have gone there (we are from CA, and CoH is logistically much easier than MSK). With all due respect to Dr. Fakih (who manages pump chemo at CoH and is Dr. Kemeny's counterpart there), I just couldn't get a handle on his track record. It might be stellar, but we had just once shot, so had to take our best one. My opinion only.

As for pumps, the Medtronic is available and currently being implanted at both MSK and CoH. Feel free to PM if you have any other questions. Like you, I'm the caretaker for my wife. I wish you all the best.

[dhamptonii]

As for pumps, the Medtronic is available and currently being implanted at both MSK and CoH. Feel free to PM if you have any other questions. Like you, I'm the caretaker for my wife. I wish you all the best.

Extremely helpful. Thank you. At 38 with 6 kids and the youngest being 3 I will move to either coast, scale any mountain and advocate on her behalf until I'm broke. So again, thank you for sharing (and to everyone for sharing).

I'll try and PM you but I might be too new to use that feature. How many posts do I need to make to become eligible to use the PM function?

[mpbser]

I don't know if anyone mentioned this but it may be of interest: https://clinicaltrials.gov/ct2/show/NCT ... cer&rank=4

[stu]

Just reading through this thread . My mum is ten years into a stage 4 diagnosis of twelve cycles of chemo , six in 2009 and six in 2010 and surgery .
Absolutely nothing else.

Saying that I don’t dismiss anything .

Stu