Liver mets: ablation vs. surgery, pros? cons?

[hopie]

Blood measurements are affected by other body sources of CA199; ideally healthy patients range 0 - 19 with a genetic few up to 22.
[...]
If you report any CA199 preop/post op data, it may help future readers as well as yourselves. CA199 during Folfox is usually overwhelmed by interferences after a few treatments.

Unfortunately, we don't have preop (primary tumor removal) data--part of the reason why I want to gather up a list of "things to know and to do"--. Her post operative pre-chemo levels are as follows:
CA199: 25,2 [0 - 34 normal range]
CEA: 9,1 [0 - 10]
GGT: 34 [5 - 36]
Cl: 104 [98 - 107]
ALT: 13 [<33]
ALP: 78 [35 - 105]
AST: 16 [<32]
LDH: 188 [135 - 214]
Mg:1,77 [1,6 - 2,5]
Potassium (K): 3,9 [3,5 - 5,1]
Sodium (Na): 138 [136 - 145]

I will look into this staining test. In the mean time, are there any "for dummies" level resources that you can suggest so I don't treat you as my personal google with questions like "Soooooo what does this mean???" Many thanks in advance!

[LPL]

hopie wrote:
I have access to medical journals and if anyone of you cannot get access to something they need, please let me know!

Thank you hopie for saying that. I will remember your kindness to help, next time I get disappointed by ‘only abstract’

[rp1954]

Potassium (K): 1,9 [3,5 - 5,1]

Hopie, you need to check her potassium level right now to see if that's not a typo graphic error. 1.9 That's way too low. Under 4 is potassium supplementation territory.

"Low potassium (hypokalemia) Definition
By Mayo Clinic Staff
Low potassium (hypokalemia) refers to a lower than normal potassium level in your bloodstream. Potassium helps carry electrical signals to cells in your body. It is critical to the proper functioning of nerve and muscles cells, particularly heart muscle cells.
Normally, your blood potassium level is 3.6 to 5.2 millimoles per liter (mmol/L). A very low potassium level (less than 2.5 mmol/L) can be life-threatening and requires urgent medical attention."

[hopie]

Potassium (K): 1,9 [3,5 - 5,1]

Hopie, you need to check her potassium level right now to see if that's not a typo graphic error. 1.9 ."

Sorry, it was my typo! It is 3.9.

[O Stoma Mia]

... Please let me know if anyone's interested in helping me prepare such a list and we can start a new thread.
(...)
And I love the idea of "an ethnography of NED." Again, let me know if anyone would be interested in gathering such data!

I am interested in both of your ideas -- your master checklist idea, and your discussion of NEDness. I think the NED discussion could lead to a publishable article eventually, depending on how the concepts are documented and developed. If you decide to start new threads on either of these topics, I hope you get a good response.

I don't have time right now to collect my thoughts in these two areas because I'm leaving soon, but I do have some materials in my files on both of these topics -- including an old 2014 draft on NEDness that I never finished and never got around to posting.

[hopie]

Thank you hopie for saying that. I will remember your kindness to help, next time I get disappointed by ‘only abstract’

Ugh, I hate those "abstract only"s too, happy to be of help!

[hopie]

I am interested in both of your ideas -- your master checklist idea, and your discussion of NEDness. I think the NED discussion could lead to a publishable article eventually, depending on how the concepts are documented and developed. If you decide to start new threads on either of these topics, I hope you get a good response.

I don't have time right now to collect my thoughts in these two areas because I'm leaving soon, but I do have some materials in my files on both of these topics -- including an old 2014 draft on NEDness that I never finished and never got around to posting.

Great!! I'll get those threads started and happy and safe travels to you!

[hopie]

If you report any CA199 preop/post op data, it may help future readers as well as yourselves. CA199 during Folfox is usually overwhelmed by interferences after a few treatments. For us, with metronomic 5FU, milder drugs, anti-inflammatory supplements, steady blood sugar etc, and no recurrence, CA199 was very steady.

I've read some studies regarding CEA & CA 19-9 surges during initial rounds of chemo, but I guess I won't know until we see a couple more blood results and scans. I so so wish we had her levels prior to her primary surgery... I've also asked around about CA 19-9 staining but I wasn't able to communicate it fully since people kept telling me that it's a blood test. I'll ask her oncologist about that and adding cimetidine. In the mean time, are there any beginner-level resources you could suggest rp1954? I don't know where to begin..

Anyways, here are the results after her first round of chemo for the record.
(it removed my well placed spaces, sorry for the visual torture!)

11.02(pre chemo) 25.02(after 1 round) limits
WBC 6,3 5,4 4.1 - 11.1
RBC 3,99 3,93 4.1 - 5.5
HGB 10,6 10,7 11.7 - 15.5
HCT 33% 32% 35-47%
MCV 82,7 82 78-96
MCH 26,6 27 26-33
PLT 356 299 150 - 400
ALT 13 19 <33
ALP 78 81 35-105
AST 16 23 <32
CA 19-9 25,2 39,0 0-34
GGT 34 27 5-36
CEA 9,1 10 0-10
CI 104 106 98-107
Kreatinin 0,59 0,64 0.6 - 1.2
tGFH 115,35 104,55 >90
LDH 188 159 135-214
Mg 1,77 1,92 1,6 - 2,5
K 3,9 4 3,5 - 5,1
Na 138 140 136 - 145

[rp1954]

I've read some studies regarding CEA & CA 19-9 surges during initial rounds of chemo, but I guess I won't know until we see a couple more blood results and scans. I so so wish we had her levels prior to her primary surgery... I've also asked around about CA 19-9 staining but I wasn't able to communicate it fully since people kept telling me that it's a blood test.

That answer shows the limits of their technical background, it's an antibody stain that can be used either way. The lab pathologists know it's a stain, they just hate a little extra work for a single CA199 (low volume, they only use it for pancreatic cancer cases and either run it as a single in a batch processor, or wait for a pan can case). Matsumoto (2002) is the doctors' starting reference for CRC stains with CA199 and CSLEX1, for cimetidine use. I'm not sure if the old Life Extension article with CA199 is still there.

Anyways, here are the results after her first round of chemo for the record.
(it removed my well placed spaces, sorry for the visual torture!)

It's fine - your format is perfect in my quote+edit mode. Thanks, that's the most complete record reproduced here that I recall (IIRC, some close ones). Hope it provides a stepping stone to where we all need to get our records.

[hopie]

That answer shows the limits of their technical background, it's an antibody stain that can be used either way. The lab pathologists know it's a stain, they just hate a little extra work for a single CA199 (low volume, they only use it for pancreatic cancer cases and either run it as a single in a batch processor, or wait for a pan can case).

I feel that it also has to do with the amount of knowledge they attribute to patients/caregivers. I've been asking around whether HAI pump is offered in Turkey to a couple of surgeon friends and I couldn't convince a single one of them that it IS a different thing from a port that is connected to the hepatic artery. I will ask her oncologist about the stain and cimetidine next time I see her though!

[rp1954]

Hopie, I don't see any record of Avastin (bevacizumab) so far. That is for perioperative preparation within 6 weeks of surgery, or that is an availability/cost problem there?

[hopie]

She didn’t get it on her first round because some mutation tests weren’t out yet, she did get it on her second round though.

[rp1954]

You've got a fairly good data set, it is missing inflammation data that is important in various ways to cancer and treatments. Cheapest for us is ESR, $2. Probably best overall is hsCRP it is cheap in the US costly for us but is important for markers; and ferritin taken at least occasionally-it tends to be associated with the cancer. A marker used mostly for liver cancer is AFP but noted more often in Asian CRC papers, it turned out to be very inexpensive for us, and especially important in later years. Another cancer useful, off label marker is ceruloplasmin, that can be useful and targeted. Other inexpensive panels that are worthwhile occasionally are HgbA1C, bilirubin and protein AG, some people need to monitor them frequently on chemo.

Ok, so let's discuss some about what's happens with chemo and cancer.
First we try to improve the blood readings in various ways. For my wife's anemia, Hgb~10, we used 1-2 tablespoons of liver products (pate', lightly seared liver, canned liverwurst) daily; this boosted Hgb up to 13 - 14 while on immunochemo in several weeks, good for years. Since sugar levels are associated with IGF-1 levels, we targeted HgbA1C at 4.50 and it was easy with a lower body mass initially caused by cancer and a low carb diet, for our first two years - backsliding on diet, exercise and weight later. HgbA1C control is tougher with heavy chemo, especially the steroids and organ toxicity.

Your mom's cancer has initially elevated her platelet count and that has implications for the production of VEGF-A and higher clotting; healthy average for platelets is near 230. Chemo knocks the platelets down, some like Folfox faster than others, to levels that often force people off chemo below 50 to 100, with permanently damaged platelet levels. So we aimed to hold the line at 150-220 by milder chemo and PSK, did so for 8 years. Closer to 150 most years but fighting as it went below 200. People are often slowed down on their chemo, or blown off whole treatments by low platelets in a few months of heavy duty chemo. 10(emergency) - 30 (scary to worried) - 50 (usually the low allowed for a next treatment, dr's call). Lack of platelets can end chemo.

Likewise, your mom's cancer has initially elevated her white blood count and neutrophils, unbalanced her neutrophils and lymphocytes ratio, probably very high at diagnosis. Folfox typically will bring these down, too much, and become a limit to chemo treatments. We were able to maintain WBC at 4 to 5 with PSK on immunochemo, but that is not likely with Folfox without Neulasta etc.

Hopefully your mom's MCV will rise over time as a rough measure of chemo activity and success. It took us a second surgery and a long time to build MCV and immunochemo activity up but we eventually got it up far beyond normal chemo's success levels.

Your mom's RBC is on the (be)low edge of normal. We always struggled with RBC on chemo, critically aided somewhat by PSK. We had to be satisfied with just maintaining Hgb for oxygen transport. Other forum members might tell you their experience with Folfox.

Your mom's LDH is favorably low, but let's talk about liver panels another time.

[hopie]

Dear rp1954, thank you so much for these comments!!

I’m noting these down and will ask her oncologist to consider adding these.
What’s interesting to me is that my mother’s red blood cell levels were better before surgery. I’m adjusting her diet to sustain her current needs. I was going on a high protein, minimal carbs/sugar diet. Fish, vegetables, legumes/beans and greens. She’d only eat red meat once a week but I will make that 2 days a week to increase her protein intake. We’ll see how they effect it when we her blood results next week before chemo.

She was initially hospitalized due to some sort of inflammation with REALLY high CRPs. Started around 38, they thought it was diverticulitis, so they administered antibiotics, peaked around 220s, then turned towards a lower trend and got back to 15s after her surgery. It hasn’t been tested since, so I’ll ask about that too. Her neutrophils were higher when she was hospitalized too, but then they lowered with antibiotics.

Hopefully your mom's MCV will rise over time as a rough measure of chemo activity and success. It took us a second surgery and a long time to build MCV and immunochemo activity up but we eventually got it up far beyond normal chemo's success levels.

How does MCV play into the overall picture? Her MCV has been pretty stable throughout, either 82 or 83.

Her PLTs, however, kept going up even after her CRP lowered, which made her former doctor wonder about cancer in the first place. She was on blood thinners for two weeks after her surgery. Her last two blood work seems okay, but I am aware that the lower trend might disturb treatment course.

I’ll keep posting updates here and if I have time I might set up a google doc so if people want to contribute with their levels, we can create a pool.

[rp1954]

Many blood panels that you don't already have, will be more distorted with each chemo, the best versions before/after surgery. If our doctors don't order our requests, we order ourselves. A lot of people let doctors destroy their information and options, by a lack of cooperation or just letting agreed action items drop, "oops". So be warned.

Red meat won't change Hgb like 1 to 2 TSB of daily liver; this should be easy to blend in sauces etc as a flavor ingredient.

Slow rises in MCV have survival and response/activity information content based on larger changes and higher MCV levels. Higher is better and predicts survival. Too much remaining tumor mass will mute MCV rises as will lack or loss of chemo activity. MCV is slow but important for long term chemo monitoring. MCV is more rapidly sensitive to drops in chemo activity later on. MCV is best when done folate replete (eat the liver).