STAGE IV RC GUYS AND GALS

[utahgal7]

roadrunner,

No, I actually started FOLFIRI based on positive Signatera test from July of this year. CT scan in July was clear of any new lung nodules. New lung nodule didn't show up on CT until this month . My onc wanted to be proactive because as you know, positive Signatera means an eventual recurrence. So I started FOLFIRI at the beginning of August. My onc thinks its odd that I have a new lung nodule while on FOLFIRI. But new nodule is not big enough for biopsy yet. Who knows, it might not even be cancer. I am going to try not to sweat it because the holidays are coming and I want to enjoy the time with my family.

[roadrunner]

Ah, missed that, thanks. I will say this: That’s an aggressive chemo approach for pulmonary nodules. As I understand it, it’s just theoretical that FOLFIRI can clear micrometastases. It is generally reported to have a roughly 1-yr. increase in PFS in that context—and it reduced my nodule/mass somewhat before surgery, but is he/she thinking that it will result in cure?

[utahgal7]

roadrunner,

That's interesting information about FOLFIRI and micrometastases with regard to PFS. As far as cure goes, my onc said that 60% of CRC patients can be cured after SOC. I don't know if I will ever be cured and my onc hasn't shared his thoughts about cure. I have some pretty serious tumor mutations like most of us on here (P53, APC, KRAS G12A, FBXW7 and others).

I am hopeful that living a healthy lifestyle can benefit me. However, I have already accepted whatever reality comes from this disease, be it good or bad.

I am glad that FOLFIRI wasn't too hard on you and I am glad that your hair has grown back.

Take care!

Paige

[utahgal7]

roadrunner,

One thing that I forgot to add. I am looking closely at several clinical trials. Specifically, the trials with botensilimab/balstilimab look promising. However, most trials require measurable disease of at least 10mm per RECIST guidelines. So, if my new lung nodule is cancer then, I will have to wait for it to grow, obviously.

Are you interested in any clinical trials?

[roadrunner]

Absolutely! I’m NED at the moment but that might not last long. If there’s anything you can point me towards, I’d definitely be interested. Best to be prepared.

Another thing I should have said before: I think the 12-13 month PFS FOLFIRI figure was the median. Also, if you’re concerned about progression on chemo, wouldn’t another Signatera be in order?

[skimom]

Hi Paige - I am so sorry for your struggle with FOLFIRI. Have you had a UGT test done? I’m new to all of this alternative stuff but I had it done a couple weeks ago and it was positive. FOLFIRI likely toxic to me. I hear mixed messages on if that makes it less effective. If so it could make sense that I have 20+ new lung mets since starting it back in July. I just got switched back to Oxolyplatin. If you haven’t had it done, it may be worth looking into. I had it done by an ND but it is a Labcorp test and oncologist said he is going to repeat it at my next treatment ( I don’t think he believes the results. SMH..) Maybe onc could do for you and insurance would pick it up?

Praying for the best for you! And everyone with this awful disease. I love your positive attitude and think it helps so very much to have that mindset :)

[utahgal7]

roadrunner,

If I see any trials, I will definitely send you a DM. As far as further Signatera testing, I have to wait until January for further testing per my onc. I had 2 positive Signatera tests this past July and again this October.

[utahgal7]

Hi Sara,

Thanks for the info about UGT test. I did not know about that particular test and I will definitely look into it. I am sorry that FOLFIRI was toxic to you. Despite what some others may think, FOLFIRI is a hard chemo. I hope Oxaliplatin works better for you. Keep in touch and let me know how you are doing.

[Rock_Robster]

Hi Sara,

Thanks for the info about UGT test. I did not know about that particular test and I will definitely look into it. I am sorry that FOLFIRI was toxic to you. Despite what some others may think, FOLFIRI is a hard chemo. I hope Oxaliplatin works better for you. Keep in touch and let me know how you are doing.

Also worth doing the blood test for Gilbert’s Syndrome - it’s a genetic liver enzyme deficiency that affects almost 10% of the population and means you can’t metabolise 2 drugs properly - irinotecan and acetaminaphen (paracetamol). It’s characterised by isolated high total bilirubin, and you need a serious dose reduction to make irinotecan tolerable (even at 50% I had quite severe toxicities) because the effective absorbed dose is actually much higher than normal.

[utahgal7]

Rob,

Thanks for telling me about this test! Wow, there's so many tests to keep track of. I am seriously overwhelmed. I will definitely mention this test to my onc and see if he thinks I should be tested for Gilbert's Syndrome.

Take care,

Paige

[Rock_Robster]

Rob,

Thanks for telling me about this test! Wow, there's so many tests to keep track of. I am seriously overwhelmed. I will definitely mention this test to my onc and see if he thinks I should be tested for Gilbert's Syndrome.

Take care,

Paige

No worries. If you’re getting bloods done anyway it’s a pretty easy one to run. I just paid for it myself as it was easier than getting any Medicare or insurance involved - was about US$150 (equivalent in Australia).

Also if you want to impress your onc, “Dr Gilbert” was actually French so it’s pronounced “zheel-BAYR” Syndome.

[utahgal7]

Rob,

Ok thank you for the tip.

[rp1954]

Under what circumstances is the onc willing to consider Xeloda-Avastin?
If he is, I'd consider ADAPT +++/++++ instead with some IV vitamin C after checking out/clearing Riordan Clinic.
I think there are many close in advantages to ADAPT+++(+) to surgery and curative operations.

I don't have experience with formal staging but lower Stage 1 doesn't sound too bad, what is your creatinine/eGFR?
I once had pee with heavy sediment precipitate after standing, that had pretty huge (protein?) foam in the bowl.
What did I do? cut down on the meat overdose and took my vitamins including C 4x4. My Cr is highish now, but I think it was higher then.

Would/Did you ever do the consult(s) with Riordan Clinic?

[utahgal7]

rp1954:

I think my onc would reconsider FOLFIRI only if I keep having the partial bowel obstruction symptoms and I need surgery to remove the adhesions in my small bowel. Maybe he would agree to change course then and consider the ADAPT protocol. He seems pretty firm on FOLFIRI for right now. He did mention maintenance XELODA after the next 4 cycles of FOLFIRI. I will definitely mention the Avastin.

My past creatinine/EGFR has been:

Creatinine: 0.7, 0.6, 0.7, 0.7,
EGFR: 86, 98, 95, 83

No, I did not get a consult with the Riordan Clinic. I actually met with a Chinese Medicine doctor here in Utah and he recommended supplement choices. Also, beachsunrise had sent me The Moss Report DIY Guide to Research of Conventional Cancer Treatments which was helpful as well.

[rp1954]

rp1954:
I think my onc would reconsider FOLFIRI only if I keep having the partial bowel obstruction symptoms and I need surgery to remove the adhesions in my small bowel. Maybe he would agree to change course then and consider the ADAPT protocol. He seems pretty firm on FOLFIRI for right now. He did mention maintenance XELODA after the next 4 cycles of FOLFIRI. I will definitely mention the Avastin.

I'm not suggesting Avastin, I'm trying to figure where his head is at now on xeloda.
He is likely to not be familliar with either ADAPT, supplements, or xeloda chronomodulation.
The central thought is what advantages are possible with ADAPT+++, beyond burnout with Folfiri, and who is willing to work with you.

No, I did not get a consult with the Riordan Clinic. I actually met with a Chinese Medicine doctor here in Utah and he recommended supplement choices. Also, beachsunrise had sent me The Moss Report DIY Guide to Research of Conventional Cancer Treatments which was helpful as well.

I strongly suggest some center with an ND or MD that actually (and successfully) handles patients that have been on xeloda and IV vitamin C. Basically IV vitamin C can greatly improve xeloda dosage that is limited by Hand Foot Syndrome. You want a doctor that has worked with enough patients on both xeloda and IV vitamin C to dose the IV vitamin C for stage 1+ kidney disease. The chinese medicine guy - I have no clue where he's headed unless you can detail supplements and dose.