mCRC Stage IV mets to LV and LN - what can we do more?

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IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Tue Feb 07, 2023 10:57 am

beach sunrise wrote: I have a recipe to make your own tea from the roots of Astragulus from my ND at Mederi Center if you want it.

It would be great. Thanks in advance for your help
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

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beach sunrise
Posts: 1058
Joined: Thu Mar 05, 2020 7:14 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby beach sunrise » Tue Feb 07, 2023 1:04 pm

I agree, info can be so much to absorb. It is always a good thing to record all medical appts to review later.
Mederi Center Astragulus tea recipe
Cheap/easy way to get the most out of this very safe, nourishing, adaptogen
Once you have your Bulk Raw sliced Astragalus
 Take 1 handful (about 15-30g) and rinse (in a colander)
 In a pot, (ideally ceramic, but stainless steel is ok), add as much water** as you like.
 Bring to boil, then simmer for 45min.
 Strain the astragalus, collect and save that water, set aside.
 Put the astragalus back in the pot, and then add more clean water to the pot. Boil, then
simmer a second time for 30min or so.
 Collect that water and mix it into the 1st brew (water saved from first boil) you set aside.
o Highly recommended to add 3-10 slices of fresh ginger to the final boil (30
minutes)
 Consume the entirety of the brew in 1 day.
o You can use the brew in lieu of water to make rice, soup, bone broth, pasta, grits,
lemonade, gelatin, ice cubes, etc. etc.
 Note: You can double the recipe and make enough for 2 days, or triple and make enough
for 3 days’ worth of brew.
o I don't recommend brewing more than 3-days’ worth at a time.
o Can be stored in fridge.
Astragalus (aka Huang Qi) is a very safe herb in the bean family and dosing range is very
large. Minimum effects start at about 12grams per day and we sometimes dose up to 60grams
per day for patients undergoing chemo to help maintain their WBC's and RBC's and many, many
other benefits.
Note: Because Huang Qi is a high dose medicinal, a decoction like this is a way better (and more
traditional) way to take it vs. a tincture or capsule. Those are fine, but would require really large
doses to be effective. Decoction is the better and more cost-effective way to dose this particular
medicinal.
**ideally use reverse osmosis water, or at least filtered water. The amount of water doesn't
really matter; it will just affect how diluted the brew will be. The important part is how much
astragalus is in the decoction.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Tue Feb 07, 2023 2:12 pm

Perfect, thanks! Just bought sliced root online, will try that tea tomorrow.
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

claudine
Posts: 813
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby claudine » Tue Feb 07, 2023 2:28 pm

Nothing to add to all the good advice posted above, IM64 - your wife is lucky to have you on her side, it is like a second full time job dealing with this disease. I noticed that she's KRAS G12A, like my husband; it's not a very common mutation.
Wishing you the best XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

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beach sunrise
Posts: 1058
Joined: Thu Mar 05, 2020 7:14 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby beach sunrise » Tue Feb 07, 2023 2:34 pm

You can make up to three batches of tea with the same roots. So, don't throw them away after first use. Lay them on a towel to air dry and reuse up to three times.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

rp1954
Posts: 1861
Joined: Mon Jun 13, 2011 1:13 am

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby rp1954 » Tue Feb 07, 2023 5:06 pm

bleeding

We included 1 - 5 grams per day for mucosal / GI lining with buffered vitamin C, K2, glucosamine and some zinc carnosine for stomatitis. Direct application on wounds, hold for 5 min, swished swallowed.

Our ND doctor advice to try off-label Testosterone to raise Hemoglobin.

I have no idea about that

rp1954 wrote:problem is no one is ready to do it. For liver surgery problem is lung mets, for lung

Often a decline is for putative futility rather than risk. Both can be addrssed.

You have to find surgeons with the autonomy, specific skill and experience levels, and entice them by having addressed problems. This may be thez biggest fish in the hospital or national system or some foreign clinic.

rp1954 wrote:FIY, the Japanese dose for osteoporosis and cancer with K2 (MK4) was 45 mg/day with lower average. BSA.

Thanks for K2 dosage info. Will add to 45 mg/m2 daily.
Their total dose was 45 mg/day for cancer or osteoporosis. IIRC, one osteoporosis - Glau protein paper showed decreasing incremental benefit over a range, like 15 - 60 mg/day, very slight on the last 15 mg. Definite no added benefit over 60 for us (done before finding the paper) and nausea at too high a single dose ca 90 mg.

rp1954 wrote:What was her initial and peak MCV on chemo?
What was the initial or earliest LDH?

Mean corpuscular volume (ref. 80-95 fL) is mostly within reference range all the time. On Dx it was 92.7 fL, now is 87.7 fL. The highest peakwas 98.6 in October (I believe it was before chemo), and the lowest was 85 early Jan.

Too much scatter. Need to tighten events assigned to values to try to establish baselines

Lactate Dehydrogenase (<320 U/L)
Oct. 22 - 1002
Nov 22 - 556
Dec 22 - 446
Jan 23 - 273
Jun 23 - 221
Feb 23 - 240

Hopefully that's a reduction of LDH4 and LDH5 from reduced HIF-1a activity, after chemo and IVC,

rp1954 wrote:Labs can often use 2-3 different units. Pls identify units of CRP, fibrinogen and ceruloplasmin

C-reactive protein - 114 mg/L (Ref <5.0) High
Fibrinogen - 9.35 g/L (Ref 2.00-3.90) High
Ceruloplasmin - - 0.80 g/L (Ref 0.16 - 0.45) High
That's a lot of inflammation
ESR and d-dimer?

Any idea how to target/lower ALP? It mostly going down (from 1390 in Oct to 318 now) but it is not straight line.

More reduction of disease.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Tue Feb 07, 2023 8:28 pm

Claudine wrote:it is like a second full time job dealing with this disease. I noticed that she's KRAS G12A, like my husband; it's not a very common mutation.
Wishing you the best XXXXX

Agree. For me it is a first full time job, because everything else doesn't matter now. Good luck for you and your husband too - everything should be good!
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Tue Feb 07, 2023 8:29 pm

beach sunrise wrote:Lay them on a towel to air dry and reuse up to three times.

I will! Thanks
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Tue Feb 07, 2023 9:16 pm

rp1954 wrote:We included 1 - 5 grams per day for mucosal / GI lining with buffered vitamin C, K2, glucosamine and some zinc carnosine for stomatitis. Direct application on wounds, hold for 5 min, swished swallowed.

Thanks, will try. Now she don't have bleeding, but I'm going to use your mix for prevention.

rp1954 wrote:Often a decline is for putative futility rather than risk. Both can be addrssed.

You have to find surgeons with the autonomy, specific skill and experience levels, and entice them by having addressed problems. This may be thez biggest fish in the hospital or national system or some foreign clinic.

Both the surgeon and the radiologist said the liver damage is very large (they say about 70% of liver) and surgery or radiation will kill her. We need to shrink it, and after that return to surgery question again. Because HAI doesn't work for us at this stage, we are going to try radio/chemoembolization if they agree. That is our plan. Well see if oncs agree with it.

rp1954 wrote:ESR and d-dimer?

ESR is also high - 72 mm/hr (Ref. 2-30)
D-Dimer was failed - "Unable to process as specimen was clotted and we didn't before."
Last blood work was close to GI problems and bleeding time - so inflammation markers were high. Now it fixed (I hope!) and we expect better results next time.
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

rp1954
Posts: 1861
Joined: Mon Jun 13, 2011 1:13 am

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby rp1954 » Wed Feb 08, 2023 4:00 pm

rp1954 wrote:We included 1 - 5 grams per day for mucosal / GI lining with buffered vitamin C, K2, glucosamine and some zinc carnosine for stomatitis. Direct application ....

My bad.
It should read "1 - 5 grams glutamine per day for mucosal/GI lining" with all the rest.

FYI. A year or two later, there were mainstream oncology papers using 15 - 30 grams per day of glutamine for Folfiri.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Wed Feb 08, 2023 4:56 pm

Thank you. I read about low dose glutamine (and cabbage juice) for GI health in your old posts.
15-30 g/day? I also read somewhere glutamine can be used to produce glutathione and we don't want glutathione when we treat cancer, is it right?
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

User avatar
beach sunrise
Posts: 1058
Joined: Thu Mar 05, 2020 7:14 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby beach sunrise » Sun Feb 12, 2023 9:59 pm

Going back through my notes. Back last summer RBC's (hemocrit, hemoglobin) were suffering so acuppuncturist asked me to try HemoHim (TCM powder or extract).
Research it and ralk it over with your ND. I only took it for a few months. It claims to raise WBC's and lymphocytes too but not with me. Mine are probably forever fried due to radiation damage.
Ya kniw. I also found in my notes from 2 years ago about liver wurst and B12. Hopefully Rp will see this and weigh in.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Mon Feb 13, 2023 3:14 pm

Thanks a lot for your valuable advices!
Hemoglobin is our first to-do list. Yesterday my wife has GI bleeding again, fortunately, not very heavy. That is already third time, and it always started on 3rd days after chemo infusion and always only one day long. I have no doubts that it is folfox result (especially oxaliplatin). We will meet oncologist at Friday and ask him to switch to Xeloda mono.

Our "protocol" to improve Hgb is - 5mg B12 + liver food (I usually cook chicken liver) + pomegranate. Will ask ND about HemoHim, thanks!

Have you tried Fucoidan? If yes what dosage do you use? From what I found it is 1-5g daily - fairly large spread.
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

User avatar
beach sunrise
Posts: 1058
Joined: Thu Mar 05, 2020 7:14 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby beach sunrise » Mon Feb 13, 2023 4:34 pm

You are probably on the right track with the protocol. I would definitely try that first before hemohim.
I have not taken fociodin, So, no experience there.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

rp1954
Posts: 1861
Joined: Mon Jun 13, 2011 1:13 am

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby rp1954 » Mon Feb 13, 2023 6:35 pm

IM64 wrote:Thank you. I read about low dose glutamine (and cabbage juice) for GI health in your old posts.
15-30 g/day? I also read somewhere glutamine can be used to produce glutathione and we don't want glutaonalthione when we treat cancer, is it right?

Glutamine metabolism, and cancer nutritition, are complex subjects. Glutamine can have can have growth inhibition or growth promotion properties.

Things that I noticed amongst all the papers and patents, were that small chemical/nutritional changes or additions could separate growth, inhibition, (massive) apoptosis or necrosis. This included precursors of glutathione.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements


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