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
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