on to FOLFIRI, with severe nausea at +4 +5 days

[H is for Hawk]

My ride on the triplet BRAF chemotherapy (Vectibix, Tafinlar, Mekinist) ended in July after a 9 month remission, my CA19-9 biomarkers were creeping up the last few months, and a July CT scan showed disease progression with three new liver mets. This last CT scan was alarming, the three new 2 x 2 cm lesions developed in only 4 weeks of my previous CT scan, it appears to be hyper accelerated growth of some sort. I started the standard-of-care FOLFIRI (with Emmend anti-emietic) last week, with severe nausea at the +4 and +5 days post irinotecan. I tried dealing with the nausea at home with consecutive dosing of Zofran, Compazine, ginger and Reglan anti-nausea pills with little success. Anybody have any other ideas to deal with the unrelenting nausea? At the +6 day,the nausea went away by itself.

This week, I had the liver mets biopsied at MSK for the MSK-Impact study, to test for 240 genetic mutations, to see if anything changed in a year. I am hoping I might be "upgraded" from MSS to MSI, to offer me more treatment options. I also had 4 core needle samples taken for Champions Oncology. This start up company grows the patient's fresh tumor tissue in lab mice, then tests other non-standard CRC chemotherapy agents on the mouse tumors, something like Gemcitibine, that is usually used for pancreatic cancer. This may offer some novel treatment options beyond Lonsurf or Stivarga.

On the spiritual side I registered for a John-of-God retreat in September at the Omega Institute, in Rheinbeck NY. John-of-God is a well-know faith healer based out a small village in central Brazil, where hundreds of sick folks from around the world gather every day. John-of-God claims not to heal people directly but directs the "energy meridians" of others gathered in the room to heal the sick. I am normally very skeptical of this type of medicine. I asked my palliative care physician about this, and he believed "there is something to the energy meridians in the body stuff". He is a firm believer in the power of accupuncture, where the same energy meridians are involved and he treats cancer patients every week with accupuncture. I am looking forward to meeting John-of-God in person and hope something positive happens, mentally or physically.

[rp1954]

Hey, Hawk thanks for the update. Sorry for the GI problems.

One board member that had given up with Folfiri-Avastin wearing her out, got several more good years of QoL with Folfiri using IV vitamin C + K3, and perhaps oral glutamine (glutamine had been posted for iri- GI problems before). Since histamine mediates VEGF and other growth factors, we bang on high LDH - CA199 with IV vitamin C and 5FU etc. How different your BRAF, low CEA cells might do, don't know.

As others have, we sometimes see different marker expressions (CEA, CA199, AFP, LDH) substantially change with treatment changes that would not be well caught or characterized by one or several other markers. Naturally, we track all the active markers along with other less direct indicators like ALP, GGT, d-dimer, fibrinogen as we can afford them, dependent on budget and local pricing.

[GrouseMan]

Hawk - My wife has tolerated almost all her chemo combinations pretty well. Worst was Folfiri and Avastin, but even then the nausea was not very bad for her. When this stopped working, they put her on Just Irinotecan, Erbitux, and (probably Avastin - its a trial and she might be getting placebo instead but we doubt it as long as she has been on Avastin I can't see them taking her off it, not to mention she still has some of the side effects that are usually attributed to it). Anyway - when the 5-FU was takin out the mix what little nausea she had went away. She really likes this chemo combi (as much as anyone could) and thinks it's a piece of cake compared to the rest she has been on. Maybe dropping the 5-FU might help some with your side effects?

Lets hope you are able to get back on the Stable Train.

GrouseMan

[H is for Hawk]

rp1954,
Thanks for the adjuvant suggestions. I am on the fence about whether to start high dose Vitamin C, 90 grams twice per week, or go full steam ahead with ozone therapy. I had a 5 pass ozone therapy session last week, and didn't have any negative side effects. It is much more expensive than IV vitamin c, but I am intrigued by the dramatic results reported by Vilca11 and her shrinking liver tumors.

GrouseMan,
I asked for the Emend anti nausea premed at the 2nd cycle of FOLFIRI, and this helped significantly with the severe nausea, brought it down to a 2 on 1 to 10 scale. I am reluctant to drop the 5 FU, as I think hitting my cancer with as many agents as possible will give me best chance of a response. I also remember I didn't have any nausea issues with FOLFOX, which also has 5-FU, so I don't think 5-FU was the problem.

[Cfbiff]

For me, the nausea cycle didn't break until I started using compazine as a preventative. I start taking it the night immediately following the treatment.

[BeansMama]

Sorry you are having issues as well hawk. I'm not much help as I am navigating irinotecan + vectibix nausea issues right now myself, but wanted to send some commisseration vibes your way. I hope you find what works for you soon.

[jortego128]

Hawk, I will pray for you friend. I know at this point you are probably willing to try anything, just be careful with this "Joao de Deus" guy. He has made a very good living for himself with his fame over the years. Not discounting him, as I cant know for sure, but his lifestyle doesnt seem to jive with many of the faithful throughout the ages who have seen apparitions / had miracles attributed them through God-- most of which were spiritually rich yet worldly poor. Just be careful, and in any case, place your faith in God. I sincerely hope you get your miracle.

BTW, this may seem trivial, but what is the meaning of your screen name, and the icon that goes with it? It seems very curious, and you seem like a very worldly and educated man.

[H is for Hawk]

Jortego128,
Thanks for the sincere complement; unfortunately I am having difficulty outsmarting my cancer. I have seen the best doctors in the country, tried numerous complementary therapies, but I just can't shake this colon cancer thing. I would be happy to be able to manage it as a chronic disease at this point.

My screen name H is for Hawk refers to my last name. I am also paying homage to the British author Helen Macdonald, who published the book "H is for Hawk" (2014) which has won many literary awards. It tells of Macdonald's story of the year she spent training a goshawk in the wake of her father's death. Her father, Alisdair Macdonald, was a respected photojournalist who died suddenly of a heart attack in 2007. Having been a falconer for many years, she purchased a young goshawk to help her through the grieving process. My avatar is simply the cover of the book, with a hawk on a tree limb.

Don't worry, I will be spending three days with John-of-God in New York in a seminar format; I won't be turning over all my assets to him and moving to Brazil.

[Momto5boyz]

Have you tried Ativan? I was given it to help with my nausea and I really thought it helped a lot.