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

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

Postby IM64 » Sun Feb 05, 2023 12:58 pm

Hello everyone, That is my first post here and after 4 month from my wife was diagnosed with late stage mCRC. It was her first colonoscopy right after 50 on our 32nd wedding anniversary day... The word "shock" cannot describe our feelings and it took some time to finally understand what happened, and realize it happened with us.

Nevertheless things moved quickly - after colonoscopy she was left in the hospital (RVH in Ontario), CT scan was done in a couple of hours and doctor from Inpatient surgery said scary words - the disease is incurable and only response for chemo may say how long time she can get and let me stay with her for the night in hospital.

Diagnosis: Metastatic sigmoid colon cancer. Multiple bilateral pulmonary metastasis largest 1.6 cm no pleural metastasis. Liver shows extensive bilobar hepatic metastases disease throughout all segments. The dominant lesion in the left lobe of the liver involving medial hepatic segment 2/3 measuring 7.2 x 3.9 cm. The right hepatic lobe has innumerable lesions, with the confluence of the dominant side-by-side lesions in hepatic segment 5/6 measure up to 13.3 x 9.3 cm. Multiple additional smaller lesions are seen.

Biopsy (got it later): MSS, BRAF/NTRK wild type, KRAS G12A mutation, PIK3CA, G545L mutation.
Blood work at DX:
CEA - 4163
Liver panel (Bilirubin total - 266, ALT - 310, ALP - 1390, Icteric Index - 2+)
Electrolytes (Calcium, Magnesium, Phosphate - in reference range)
Chemistry Panel (Sodium, Potassium, Chloride, CO2, Anion Gap, Creatinine, Glucose - in reference range)
CBC (WBC, MCV, MCH, Neutrophils, Lymphocytes, Monocytes - in reference range, RBC - 3.24, Hemoglobin - 96, Hematocrit - 0.304, RDW - 19.8, Platelet - 599)

Because they fond colon was near obstructive and biliary duct was compressed by liver tumor, was made a decision to install biliary drain (stent wasn't possible) and laparoscopic loop colostomy. All of that was done in about 4-5 days from DX. Oncologist and surgeon decided to leave the primary tumor in place in order to reduce the healing time from 6 to 3 weeks and start chemo asap. We were really upset by this, but other docs later were agreeing this decision. The main problem is liver.

Chemo started at the end of October 2022 - 85% Folfox (due to high Bilirubin) without Avastin (onc wanted to wait a little more time after stoma surgery). Second cycle we got full 100% Folfox with 100% Avastin.

By that time I had already read Patrick Quillin and Jane McLelland books and some Life Extension articles. On the one hand, that indicates me the direction where to move in general, and on the other hand, it showed how much is needed to be learn to start understanding a little and make some decisions. I also absolutely happy I found this forum - it's tons of priceless information, and I am very grateful to all people who wrote and created this invaluable content.

In December we started IVC two-three times a week (50-75g) and a complex of vitamins/supplements/some off-label drugs (Cimetidine- 300mg, Melatonin – 20mg, Coriolus versicolor (PSK% ??) –6g, D3 – 10,000iu, K2 (MK4) – 25mg, E Alpha/Gamma – 400iu/400mg, Niacinamide – 500mg, Niacin – 500mg, Fucoidan – 1000mg, ALA – 600mg, Fish/Krill Oil – 5000mg, Resveratrol – 1000mg, Quercetin – 1200mg, 5-LOX inhibitor – 200mg, Magnesium – 500mg, Selenium – 200mg, Beta Glucans – 1000mg, L-Carnosine – 500mg, EGCG – 750mg, + Maitake D-fraction, Silymarin, Kyolic aged garlic, Berberine, Garcinia Cambogia, DIM, Andrographis, Ellagic Acid, Bioflavonoids, Phytosterols, Probiotics). There was also Turmeric, but Onc and ND advice to stop it.

I believe it all works synergistically with chemо and we got some encouraging results - CEA dropped from 4163 to 498, Bilirubin 266 -> 8 (drain was removed after decompression), ALT from 310 to 25, ALP from 1390 to 318, Platelet from 599 to 280. In general, wife feels not bad, and doctors who read the diagnosis are surprised how good she looks. She continue our usual low carb diet, do some fitness exercises (not regular workout how it was in past life). We are very cautious in our optimism, however.

Unfortunately not everything was smooth. She got blood infection probably in hospital when they fix bile drain leakage and we spent a week to hospital to fix it. After 7 cycles of chemo, she got abdominal pain and diarrhea with GI bleeding (we think it is mostly oxaliplatin job). Hemoglobin dropped to 4.8 so again a couple days in hospital + 2transfusions (raised up to 8 only) + glutamine with glucosamine to healing GI. Still continue trying to raise Hb at home with a lot of liver food and 5000mcg B12 daily. Onc postpone chemo for one week to be sure no more bleeding. We spent this week on 4 IV vitamin C and one IV 200ml mistletoe, and were happy to see CEA keep a little dropping. We talked with onc yesterday and he is ok to switch us to Xeloda (2+1 protocol) if we want it.

Our first CT in December (after 2.5 chemo cycle only) doesn't show any big changes. Nothing shrinked and nothing growing. "Some of liver metastases in the interim demonstrate some foci of central mineralization, possibly sequelae of treatment response." We hope to see possible response on next CT in March.

During that 4 month we meet liver surgery onc (Sunnybrook hospital) and liver radiation onc (Princess Margaret Cancer Centre) - no good news (expected). Both can not (and do not recommend) do any liver surgery/radiation on this stage because damage is too big. Even hepatic artery pump can not be implanted because we have multiple mets in lungs (they still can implant pump if only 1-2 lung mets).
Good news is lungs radiation oncologist from Princess Margaret agree to SBRT. We check CT scans together and calculated 12 nodules. They think actual number will be about 20 upon careful check. On average, they can treat about 6-8 in one cycle. We agreed to wait for the next scan in March and make a decision.

So raw plan is:
1. Do the best to stop spreading and get the disease under control with minimal immune system damage
2. Try to maximum clean the lungs by chemo/SBRT
3. Implant hepatic artery pump to kill/shrink liver mets
4. Fix the liver problem with surgery/transplantation or any other method available
5. Resect the primary tumor at any convenient stage
Yes, it is long, difficult, with lot of "if" and may by not always realistic for now, but we don't have another one.
Following the advice of rp1954 we ordered more additional blood work tests and planning to continue with it to have opportunity to see dynamics. Unfortunately there is a lot of work for improving. Only hope we will have enough time for that, knowledge what to do, and luck.

Blood work for now:
СBC (WBC, MCV, MCHC, Neutrophils, Monocytes, Platelet (259) – in reference. RBC – 2.03, Hemoglobin – 7.9, MCH 27.1, RDW 19.7, Lymphocytes – 0.9)
Liver panel (ALT – 25, ALP – 318, LDH – 232, GGT – 332)
Cancer panel (CEA 498, CA19-9 – 1834, CA125 – 59)
Other with problems (Fibrinogen – 9.35, Ferritin – 167, Albumin – 33, GGT – 332, Creatinine – 41, Ceruloplasmin – 0.8, C Reactive Protein – 114, Copper – 50, 25-Hydroxy– 127)

We know statistic about mCRC, but not ready to agree with it. We are going to fight and use everything possible to go beyond statistic and win at the end. I understand with our diagnosis, we do not have much time for experiments and every mistake can be very expensive. So we highly appreciate any advice about treatments, supplements, off-label drugs, targeted strategies - everything how to kill it. We really afraid to miss something important due to no experience, so any thoughts or ideas what can we do more to survive and win are very welcome.

Sorry for so long text. Everything looks important and don't know what to cut.
Many thanks in advance
IM64
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

Nor Cal
Posts: 89
Joined: Sun Dec 06, 2020 8:18 pm

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

Postby Nor Cal » Sun Feb 05, 2023 1:41 pm

Sorry to hear about this.

Not much to add, but I am wondering if you have investigated radioembolization/chemoembolization as an alternative to hai pump? There is some evidence that using these techniques early in the process can be beneficial. I'm about 2 years out from mine, and my liver function is good, despite having a similar tumor burden originally that you describe here.

Another topic for discussion with team is potential for portal hypertension. As the tumor burden hopefully decreases, it is common for the scar tissue in the liver to create issues with blood flow, so important to monitor for splenomegaly and other symptoms. Initial treatment for this is Nadolol or similar, to reduce pressure.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 57 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

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 » Sun Feb 05, 2023 2:26 pm

You are treatment limited by any critical parameter - e.g. WBC, Hgb, platelets, etc.
RBC is already pretty thin, presumably by chemo. Your wife is likely to hit her limits on 1chemo or radiation tx. Sequential surgeries are best if you can get them.

At one time Canada had or was working on a Rolles laser site. That would be the most effective lung therapy for the least persistent "tax". I am wary of SBRT's tax if you are trying to tag all the cancer sites in rapid fire. Of course, most surgeons don't believe multiple metastatic surgeries can be done
effectively - no idea of IV vit C for recovery, advanced wound healing nutrition and near continuous chemo to chain them together. I have to admit the liver resection without HAI, embolization or ALLPS isn't likely to clear the liver.

Even now your wife is probably (soon) limited to lower dose oral chemo to prevent post surgical spread rather enough to radically slow or lower CEA long term. However that might be enough in an enchanced +++ oral format if you can run the surgeries in sequencue, a big if. But sometimes patient can find or create advanced support teams or packages.


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

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

Labs can often use 2-3 different units. Pls identify units of CRP, fibrinogen and ceruloplasmin
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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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 05, 2023 5:27 pm

Very good advice you have been given.
Your immune supplements are great.
I like to add that for T cells , Reishi and Astragalus root to keep the good T cells high and other immune support on a deeper level. Cordyceps for kRAS kill.
Can I ask who your ND is? What is the dosage level of your immune protocol? Basic, dbl, triple of the suggested dose? (never mind on dose, I didn't remember it from reading your post last night)
Why stop the Turmeric?
Expanded bloodwork is a very good to consider, get down to the molecular level and try to level those up or down which ever way they need to go.
I struggle with IL 6 and 8 being to high because of the 3-4 nodules in my lungs and a few other markers that point to lungs.
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

Faith42
Posts: 34
Joined: Mon Sep 01, 2014 4:37 am
Location: New Mexico

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

Postby Faith42 » Sun Feb 05, 2023 10:39 pm

I used to do intravenous alpha lipoic acid. Might want to read Dr. Burt Berkson on that and also I follow Joe Tippens protocol with a low dose of fenben. Sounds like you are doing all the right stuff though. I also agree with the decision to not remove the primary tumor so she could get on chemo quicker. Hang in there. Prayers up for you and your wife!
Mom 42 at Dx
Child 11 yo
Dx 1/12 Stage IIIT N2b. 11/57 nodes
Chemo 3/12
Dx 8/14 Stage IV to lung
10/14 2 lung mets surgically removed. 2 VATS left and right
Chemo 4/15
Rising CEA and met to right lobe of liver 1 cm. surgery in 6/15
Rising CEA and cryoabeltion 10 mm on left lung in 12/16
Rising CEA and met to liver. Surgery 10/17
Cryoabeltion 12/17
NED 2/14/18
Warrior and Fighter

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 06, 2023 10:45 am

Nor Cal wrote:Not much to add, but I am wondering if you have investigated radioembolization/chemoembolization as an alternative to hai pump? There is some evidence that using these techniques early in the process can be beneficial. I'm about 2 years out from mine, and my liver function is good, despite having a similar tumor burden originally that you describe here.

I'm so glad you wrote it! We have never heard about radioembolization before and I still can not understand why no one from our docs never told us about it. All we hear about liver is - too much damage / can not do anything / not curable, etc.. For some reason they don't offer any options, don't give us any chance to try.
I had a look on that procedure, and believe we can do it. It shouldn't stop systemic treatment, so I don't see any barriers. We will definitely discuss it with onc on the next meeting.I see in your signature you went through it. Did you need to postpone systemic therapy? How heavy were side effects? Thanks a lot for great advise - looks like it can opens new possibilities for us.

Nor Cal wrote:Another topic for discussion with team is potential for portal hypertension.

Noted about portal hypertension - it is very important for sure. I will ask onc next meeting. Thanks

It is really perfect your liver works good and treatment did the job. Each news like that gives more hope, which is so needed.
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 » Mon Feb 06, 2023 10:54 am

rp1954 wrote:RBC is already pretty thin, presumably by chemo. Your wife is likely to hit her limits on 1chemo or radiation tx. Sequential surgeries are best if you can get them.

Many thanks for reply. Yes, we had GI bleeding and as a result Hgb and all connected (RBC, Hematocrit etc) were dropped. I think it was oxaliplatin/Avastin side effect, so thinking/going to switch to Xeloda oral mono. We talked with onc last Friday about recent blood work and he generally happy about it. He believe bleeding wasn't connected with chemo, because WBC and platelets are good for now, and was good before. Hemoglobin is our main target now for sure. Our ND doctor advice to try off-label Testosterone to raise Hemoglobin.

rp1954 wrote:At one time Canada had or was working on a Rolles laser site. That would be the most effective lung therapy for the least persistent "tax". I am wary of SBRT's tax if you are trying to tag all the cancer sites in rapid fire.

I agree sequential surgeries are the best. The problem is no one is ready to do it. For liver surgery problem is lung mets, for lung - problem is liver mets. They don't want other mets. I have no idea how to change their minds. Vicious circle, but we definitely need to start somewhere. I read about Rolle's lung laser surgery in Germany - but I believe they also don't want any other mets except lung, did they?

We understand SBRT is not the best decision - but unfortunately it is the only option we have for now (will also ask about radio/chemoembolization for liver as was advised) We hope chemo/immune supplements/IVC helps with small nodules (less then 6-8mm) and target SBRT just biggest (about 10 nodules I believe). As we understand they may do it in one cycle, or we can ask to divide for 2-3 cycles and have a gap say 2-3-5 month between.

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.

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.

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

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

Any idea how to target/lower ALP? It mostly going down (from 1390 in Oct to 318 now) but it is not straight line. Sometimes it rises.
I'd like to thank you for your posts - I learn a lot from them.
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 » Mon Feb 06, 2023 11:10 am

beach sunrise wrote:I like to add that for T cells , Reishi and Astragalus root to keep the good T cells high and other immune support on a deeper level. Cordyceps for kRAS kill.

Thanks for advice. Will definitely add Reishi and Astragalus. She already had Cordyceps but for some reason we paused it. Will continue it especially if it works for KRAS. We also tried chaga and temporarily stopped to reduce a little the overall oral drug load. I think it may be make sense to rotate some supplements and always take only the most important ones?

beach sunrise wrote:Can I ask who your ND is? What is the dosage level of your immune protocol? Basic, dbl, triple of the suggested dose? (never mind on dose, I didn't remember it from reading your post last night)

Unfortunately, we have not yet found an ND that can/wants to actually cure disease on an individual basis. Our existing ND just provide IVC or mistletoe IV treatment. He had a look my supplements list, agreed with it and advise to stop Turmeric.He also advise low dose naltrexone to treat cancer.
Our protocol was prepared by ourself based on books, Internet research (mostly Life Extension site, PubMed articles, other medical sites) and this forum (including lot of your helpful advices).

beach sunrise wrote:Why stop the Turmeric?

He said but I forget - sorry, to many info now. Will ask again and update

Hope you can sort out with lung nodules soon and get approval from Rolles - finger cross. If you don't mind - what supplements you use to target lung nodules?
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 » Mon Feb 06, 2023 11:13 am

Faith42 wrote:I used to do intravenous alpha lipoic acid. Might want to read Dr. Burt Berkson on that and also I follow Joe Tippens protocol with a low dose of fenben.

We use ALA oral 600 mg/day, but IV will definitely give a different effect. Will do research about it and low dose of fenben. Many thanks for sharing your experience. All of that is very important.
All the best for you too!
Thank you
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

saltygirl
Posts: 171
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

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

Postby saltygirl » Mon Feb 06, 2023 5:35 pm

Please ask about folfoxiri. It’s a very hard chemo regiment. I was offered folfox or folfoxi. I had “the worst Mets” - distant lymph nodes. After 5 folofixi I had in full pathological response. I had surgery and no cancer cells were found anywhere. My original tumor was 9.5 cm. And it was GONE. The same my Mets. I still had the whole area removed surgically including distant lymph nodes. 3 years later still NED. Best luck! You are great husband. My husband left me during this time.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

Rock_Robster
Posts: 1038
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

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

Postby Rock_Robster » Mon Feb 06, 2023 7:04 pm

IM64 wrote:
Nor Cal wrote:I'm so glad you wrote it! We have never heard about radioembolization before and I still can not understand why no one from our docs never told us about it.

Radioembolisation (aka Y90, SIRT) be a great option. It my observation it either tends to work quite well, or not do anything at all - and not super clear how to predict the outcome beforehand. A handful of people have *very* good (even complete) responses. It’s usually well tolerated; some nausea and fatigue is common; a short chemo break may be needed - or not, depending on status.

Just be aware that most providers will not consider HAI after radioembolisation has been done. It can also make resection more difficult, but usually not impossible.

Good luck,
Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

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 06, 2023 7:51 pm

Have you had the IL's, CTL (Astragulus, PSK),CDs (Butyrate, Reishi), NKTs (Astragulus, Cytokin Suppress, Beta Glucan 1,3 1,6)) ect measured by bloodwork? My target list is based on bloodwork.
Faith42 brings up a good suggestion if available. The Block Center in Chicago uses IV C, ALA and CoQ10 together for some patients and gauge benefit.
Thanks for answering questions. My ND is Dr. Belanger in MA. He in on a molecular/mitochondria level (the root) more than any other I have consulted with and believe me I consulted 6 to maybe 8. Very down to earth and open minded.
I take Atragulus in an extract form ( no taste to me) and Reishi and Coydyceps in a powder form added to coffee (it has an earthy taste). I do anything to keep pill load down where I can. It is rare that Reishi can raise AFP but it can happen so beware of that. I have a recipe to make your own tea from the roots of Astragulus from my ND at Mederi Center if you want it.
For lungs targeting IL-6 and 8 (Neutrofil induced usually but my Neutrofils are in normal range at 82.x). IL's are in upper limit for IL6 but IL8 remains about 20 pts over upper limit.
Geinistein Ultra (IL8 and inhibit a variety of growth factors)
Vascustatin (IL8 and inhibit a variety of growth factors
CoQ10 along with synergistic niacin and B2 (B2 only once a day)
IP6 to keep TGF and plasma VEGF low
Querctrin,bromalaine, nettle mix in cap form from Natera brand taken with NAC
Siliphos
Niacinamide for kick starting NAD (mitochondria support)
Cordyseps to inhibit kRAS
IVC 75g twice per week for inflammation, kRAS, ect. Just good stuff.
Healthy Cholestrol & Triglycerides for IL8 and vWF (vonWillabrand Factor, a glycoprotein)
TCM's: BaiJiang Cao for IL6&8 & vWF (powder)
Hunag Qin for IL8&10 (IL10 starting climbing). (powder) It also keeps PGE2 from getting out of control
Tian Hua Fen for IL6 (powder)
All Inclusive Great Tonify (powder) taken with the other 3 TCMs in a shot glass of water and chug it. It's terrible like pig mud to me but do it anyway :)
Fisetin (IL8)
Theaflavin (IL8)
Luteolin (IL8)
Oxymarine (IL8)
Aloe Ace for increasing CTLs (liquid)
Tri-salts for cell health
I make a flavanoid drink consisting of fruit berry powders such as Resveratrol, Pomagranite, bilberry, strawberry, tart cherry, black raspberry, (extract), lemon extract, ect
Alos been drinking warm white pine needle tea at night for the extra vitamin C and anti-oxidants it provides. I mix ginger, cinnamon and sometimes turmeric with it.
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 9:34 am

saltygirl wrote:Please ask about folfoxiri. It’s a very hard chemo regiment. I was offered folfox or folfoxi. I had “the worst Mets” - distant lymph nodes. After 5 folofixi I had in full pathological response. I had surgery and no cancer cells were found anywhere. My original tumor was 9.5 cm. And it was GONE. The same my Mets. I still had the whole area removed surgically including distant lymph nodes. 3 years later still NED.

Thanks for sharing your experience. Your response for FOLFIRI was very good and that is perfect, congratulations! We can switch to FOLFIRI any time but now we are thinking about more gentle Xeloda to save immune system as much as possible, and leave heavy chemo like FOLFIRI in case if something goes wrong or Xeloda won't response.
Anyway thanks for your input and all the best with your treatment.
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 9:39 am

Rock_Robster wrote:Radioembolisation (aka Y90, SIRT) be a great option. It my observation it either tends to work quite well, or not do anything at all - and not super clear how to predict the outcome beforehand. A handful of people have *very* good (even complete) responses. It’s usually well tolerated; some nausea and fatigue is common; a short chemo break may be needed - or not, depending on status.
Just be aware that most providers will not consider HAI after radioembolisation has been done. It can also make resection more difficult, but usually not impossible.


Hi Rob, thanks for more details about radioembolization. It is definitely need to be deeply researched. We still don't know if we are candidate for it. I'm going to talk with oncologist on our next meeting. It's probably good to have a choice but unfortunately that isn't our case. Until now, no one offer us any treatment for liver. Moreover, the surgeon from Sunnybrook Hospital say that liver surgery would never be possible for us. That is his opinion, we have another one.
So in that case we probably will agree with radioembolization even some future problems with HAI or resection can appear.
Thanks and good luck for you too!
Love the Bri. We lived in Mount Gravatt for 7 beautiful years..
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 10:29 am

beach sunrise wrote:Have you had the IL's, CTL (Astragulus, PSK),CDs (Butyrate, Reishi), NKTs (Astragulus, Cytokin Suppress, Beta Glucan 1,3 1,6)) ect measured by bloodwork? My target list is based on bloodwork.

Thank you very much beach sunrise for full detailed response! It's a tons of valuable information. I save that post to research and sorted out - too many new for me, but I definitely need to know that. Fighting cancer requires a lot of knowledge.
No, we don't have that tests (IL, CTL, CD, NKT). I had a quick look and they all seem really important. Will ask my lab if the can do it. The strategy to treat markers looks very reasonable, I like it /if word "like" can be used in that context/. Target is clear and result can be seen soon.

beach sunrise wrote:Faith42 brings up a good suggestion if available. The Block Center in Chicago uses IV C, ALA and CoQ10 together for some patients and gauge benefit.

I'm going to ask our DN if they can add ALA to IVC. Sometimes they add mistletoe. We are in Canada so I'm afraid Block Center in Chicago not an option for us.
Dr. Burton Berkson protocol is intravenous Alpha-Lipoic Acid (Thioctic Acid) + Low Dose Naltrexone (LDN). Our ND also talked about LDN so I think he knows about this protocol and believe can add it. Interesting that Chicago add Coenzyme Q10 too.

beach sunrise wrote:My ND is Dr. Belanger in MA. He in on a molecular/mitochondria level (the root) more than any other I have consulted with and believe me I consulted 6 to maybe 8. Very down to earth and open minded.

According to your protocol you found a great ND! And it may be key factor of successful treatment. We have to find someone like yours, who want to treat (not just sell IVC) and know what to do.

beach sunrise wrote:I do anything to keep pill load down where I can.

The pills quantity is a real problem, I agree. I even thought may be open caps and make a powder mix to drink it with water.

Thanks again for such comprehensive response. I believe it will be very helpful for lot of people.
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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