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

Please feel free to read, share your thoughts, your stories and connect with others!
Rock_Robster
Posts: 1027
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 » Sun Apr 02, 2023 10:28 pm

Liver SBRT is usually an option even in the case of extra-hepatic mets, and it can still be very effective on larger lesions (even done sometimes in multiple courses of treatment for very large tumours). I won’t claim it’s as good as resection, but local control rates in the long term (multi-year) can be very good, and I’d suggest keeping it in your plan (I was/am in a similar situation, with mets to several locations but a threatened liver). Also unlike major surgery, it can often mean only a very short time off chemo is needed (eg 1-2 weeks, if that).
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

rp1954
Posts: 1853
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 Apr 02, 2023 10:50 pm

There are many brands of 50,000 iu vitamin D3 caps now, either oil or powder. 20k-25k caps are rare finds, e.g. Puritans has produced 20,000 IU caps intermittently, some more brands on Amazon. Physically small caps preferred

Best deal is bulk vitamin D3 powder, up to 1kg. Required care to handle and store, in cool, dry and air impermeable multibarrier container(s).
100,000 iu/gram powder is a little bulky, 400-500,000 IU/g is probably most convenient, 1,000,000 IU/g maybe a little hard to find and meter, depending on careful mixing and dilution with other stuff to hit a given cap size. Vitamin D3 + K2 plus one or more B vitamins hand loaded were our usual best pill count reduction, short of the flavored/frozen spoonful.

IM64 wrote:Phosphate is in the plan. There are about 20 tests need to be done all together. How often did you check it during the treatment? Once week vs 2 weeks vs month?

We started off carefully, frequently and then later when everything was steady on mild immunchemo, we just did the chemistry panels with 3-4-5 week draws for CEA. Since you're doing heavy cyclical Folfiri, I'd be more careful about the escalation rate in case chemo/cancer organ damage is a factor on imbalances, and work with the drs.

Rock_Robster wrote:Also unlike major surgery, it can often mean only a very short time off chemo is needed (eg 1-2 weeks, if that).

I will remind everyone, depending on pre-op condition, drug/dose, supportive (super)nutrition, particular surgery and post surgical condition, 5FU based chemo might be doable days after major surgery. In 2011 I dug out a fist full of perioperative 5FU chemo papers from Japan - day(s) before surgery, during surgery(!) and after, so we went for UFT-LV ++ the next day, well after the IV vitamin C drip. More recently I saw some surgeons' paper that mentioned chemo with short time lags after major surgery, and these are presumably without the better wound healing nutrition.
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 » Mon Apr 03, 2023 2:28 pm

Rock_Robster wrote:Liver SBRT is usually an option even in the case of extra-hepatic mets, and it can still be very effective on larger lesions (even done sometimes in multiple courses of treatment for very large tumours).

Thanks. SBRT for liver is our second plan if surgery will be problem. Again, we need to be a candidate for liver SBRT as well.

Today we had a phone consultation with IR (which was ordered about 2 month ago!!) - unfortunately we are not a candidate even for ablation or Y90 due to metastatic burden is significantly greater than 50% of the total liver volume (closer to 70%). Second reason is her metastatic pulmonary burden greater than 5 mets that generally considered acceptable.
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 Apr 03, 2023 2:33 pm

rp1954 wrote:Best deal is bulk vitamin D3 powder, up to 1kg. Required care to handle and store, in cool, dry and air impermeable multibarrier container(s).
100,000 iu/gram powder is a little bulky, 400-500,000 IU/g is probably most convenient, 1,000,000 IU/g maybe a little hard to find and meter, depending on careful mixing and dilution with other stuff to hit a given cap size.

Thanks for advice. Probably will go this way. In addition, it will be easier to adjust the dose if needed. Just bought 1x 200,000 iu/g and 1x 500,000 iu/g - will check what is more convenient to use.

rp1954 wrote: flavored/frozen spoonful.

What is it?

IM64 wrote: I'd be more careful about the escalation rate in case chemo/cancer organ damage is a factor on imbalances, and work with the drs.

I'm going to ask our ND next Monday if he is happy to go with us this treatment. I know a 100%, oncologist won't do it. Even if ND don't want to monitor the protocol, we have a personal appointment with him every week, and always can get an advice from him. Think it will be enough.
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: 1853
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 Apr 04, 2023 5:42 pm

IM64 wrote:
rp1954 wrote: flavored/frozen spoonful.

What is it?

Teaspoon to tablespoon sized supplement mixes in a frozen/flavored matrix or coating can move larger amounts of supplement with less pill burden.
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

User avatar
beach sunrise
Posts: 1034
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 Apr 04, 2023 9:39 pm

I make shakes with things that synergize each other. I make two or three a day.
I found out that Reishi powder is not good for me (in coffee not shakes). Its rare but Reishi powder can raise liver markers so I swapped back to pills.
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 » Wed Apr 05, 2023 2:54 pm

I bought powder mix of Reishi, Maitake, Turkey Tail, Shitake and Chaga, but my wife doesn't like the taste - too bitter!...
So we returned to pills for Reishi, Maitake and Cordyceps, and use only Turkey Tail powder as we bought it in bulk and taste is more or less acceptable. I dissolve it in cold astragalus tea (thanks for recipe) with citrus pectin, a little glutamine and add 1-2 spoons of aloe vera.
All other are pills - about 120-130 pills/day and that is too much. Probably it's possible to low pills number, because some of them we use 2-3 or even 5 times per day.

Thanks for Idea with "frozen spoon" - it looks good just need to decide what to add.
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

Cured
Posts: 581
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

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

Postby Cured » Wed Apr 05, 2023 4:55 pm

Sorry to hear you are at this point. Once we are stage IV, the oncologists offer us nothing.So your alternative therapy may have benefits. Here’s praying for you to heal.I began the Fenbendazole protocol 8 weeks ago. I can use everyone’s prayers.
7-18 Stg 4
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:32
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22

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 Apr 05, 2023 7:15 pm

Thanks for your words, Cured. I’m praying for you too and for all of us here. Hope your Fenbendazole protocol will do the job for you.

Joe Tippens' original protocol includes Fenbendazole, Curcumin, Vitamin E and Full Spectrum CBD Oil. My wife takes all ingredients (including Fenbendazole 222 mg/day) except CBD Oil.
She started Fenben only from March 1, so we don't know how/if it works for us. My point is every treatment, which has some history and/or confirmed results, may (or may not) contribute to the fight against cancer. And we will never know if don't try it.
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 » Fri Apr 07, 2023 4:52 pm

We continue preparation for high doses vitamin D. From last week my wife takes 30K iu/day, week before was with 20K iu/day. Had a blood work yesterday to check how it's going on.

- PTH (Parathyroid Hormone) is at low border - 13.2 pg/mL (preference 10-66 pg/mL), but I'm not sure it's only vit D works result, because not all dairy was removed from diet, and some supplements still contain calcium (up to 200 mg all together).
- Calcium total is good - 9.5 mg/dL (ref 8 - 10.1 for women 18+).
- Calcium Ionized still good - 5.13 (already adjusted to pH 7.4) (ref 4.8 - 5.7 for women 18+).
- 25-Hydroxy Vitamin D is near top - 87.3 ng/mL (ref 30 - 100, but it depends).
- 1, 25 Dihydroxyvitamin D (active form of vit D) - still pending...
- eGFR is 111 mL/min - that is good because it is more than 90
- Creatinine is good, but close to the bottom line - 0.53 mg/dL (ref 0.4 - 1.1).
- Ferritin is good - 238 ng/mL (ref 11-306).
- Phosphate is a little higher that wanted - 4.9 mg/dL (ref 2.5 - 4.5).
- Creatinine (Urine) Random well good - 69 mg/dL (ref 20 – 275 mg/dL).
- Albumin (Urine) Random is abnormal low - 469 mg/L or 0.47 mg/g (ref is <30 mg/g) - this result looks suspiciously low for me.
Because it was dipstick test (not 24 hours test), they consider it only a "semi-quantitative value".

Next time I'm going to order also ACR (albumin creatinine ratio) test to be more confident with kidney work, especially considering that Phosphate is already higher the top border.

So in general picture looks not bad and after one more test we are going to try 40,000iu/day dose.
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: 1034
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 » Fri Apr 07, 2023 6:38 pm

Good job straightening those numbers out to optimal.
The more you get better healthy results the more it helps your body fight not to mention the great immune boost you are achieving.
I noticed the folfox fail. It failed me too. It was only poisoning me and cancer was going wild.
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 » Fri Apr 07, 2023 8:00 pm

beach sunrise wrote:The more you get better healthy results the more it helps your body fight not to mention the great immune boost you are achieving.

Absolutely agree. No chance to win without help from immune system. Save it during systemic chemo is one of the main goal all complementary treatments as I think.

beach sunrise wrote:I noticed the folfox fail. It failed me too. It was only poisoning me and cancer was going wild.

I think Folfox and Folfiri are like a lottery. Never know if never try.
Another question is there are not many other options for KRAS mCRC with heavy unresectable tumor burden. Ideally, they can shrink/dissolve the tumor to become operable (may be!). Or just give some time to figure out where to go and what to do next.
Last edited by IM64 on Fri Apr 07, 2023 8:02 pm, edited 1 time in total.
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 » Fri Apr 07, 2023 8:01 pm

duplicate
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 » Sat Apr 29, 2023 12:37 pm

Quick (actually not) update.

We continue with Folfiri chemo 6th cycle on Monday. CEA still dropping, but not as much as it was in the first cycles. From March 3 (first Folfiri cycle) we are down from 616 to 257 now. In Oct. 2022 CEA was 4163. Unfortunately recent CT didn't show any decrease in size neither in the lungs nor in the liver. I don't fully understand it.

So what we have at this moment:
1. Liver (main problem) - Right lobe 12.6 x 9.0 cm + 5.3 x 4.0 cm, Left lobe 5.9 x 3.1 cm
2. Lungs - Multiple (counted 20) bilateral pulmonary nodules. 3 biggest are 1.7cm, 1.4cm, 1.3cm. Other up to 1 cm.
3. Primary colon lesion - up to approximately 4 cm in craniocaudal extent.

We are not candidate for liver chemo/radioembolization (Y90) and HAI Pump chemo because of 2 reasons:
- more than 5 mets in lung (up to 5 is acceptable)
- more than 50% of liver is damaged (we have about 70%)

We are still in discussion with Thoracic Oncologist about lung SBRT. Early January he was ready to do it and clean the lungs from 20 visible mets in 3-4 SBRT sessions. But he wanted to wait until next CT. We met him two days ago, and now he doubts if it should be done, because all mets are stable and quantity more than 10 (but quantity didn't change!!). They want to discuss this case at the doctors' council on Monday.

Based on our meetings with different doctors we have prepared a possible treatment plan. It looks like this:
Image

Main points:
- lung clearing is a key to any procedure for liver (even LDLT)
- resection of liver left lobe met (5.9 x 3.1 cm), gives us one healthy lobe and about 50% of healthy liver, so open the door to many options like Hepatectomy (delete heavily damaged right lobe) or local treatment (radioembolization/HAI Pump).

To be honest, I doubt we'll be able to find a surgeon for liver multistage surgery in Canada (but we continue looking for), but I really hope we can resect prime tumor and do SBRT for lung here.

About complementary treatment.
- We continue IV vit C (75-85 g) 3-4 times per week
- ALA IV 600 mg 2 times/week + LDN daily
- Mistletoe 3 times/week (100mg, 150mg, 200mg)
- Hight dose vit D. When we raised dose up to 40K/day PTH dropped a little lower bottom line and TSH raised twice (calcium remained in the top middle reference). So we returned back to 30K/day.
- Low dose testosterone weekly
- TCM therapy everyday
- Lot of supplements are continued as well

One more problem we have is a bleeding. We can not find the source, suspect primary colon tumor, but no evidence. Early this week my wife has radiolabeled RBC scan. They took images for 4 hours, but no bleeding site was identified. Her hemoglobin is usually up to 80 g/L and she get about 2 units of blood every two weeks (before chemo) in average. We don't see blood in stoma bag or anywhere else, so it's most likely internal bleeding. And that is maybe a reason of constant high inflammation markers (this is just my guess).

The positive side is that she feels well, good appetite, no diarrhea or usual Folfiri side effects.

A couple blood works results:
Image

Image

Image

Image

Image

Image
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: 1034
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 » Sat Apr 29, 2023 3:36 pm

Good on the CEA decrease so far.
Inflammation is a concern for sure. I battle it also.
I believe mine is IL-6 (a pathway for making new blood vessels) taking advantage of opportunity in IL-8 (leaky vessels). I think thats the way it goes.
What anti-inflammatories is your wife taking?
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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot] and 131 guests