5 years coming up soon

[beach sunrise]

In August it will be 5 yrs since dx. SOC was barbaric mentally and physically to me. I have no regrets making a detour from SOC. Having mets show up eventaully 3 1/2 into this fight was no surprise. I still have cancer floating around somewhere, no definitive on where yet. CEA sits at 7.0.
I feel great. No loss of lung function after met removals.
High dose capecitabine daily and targeted supplements was the game changer for me.
I thank all of you for the shared experiences. It has helped and continues to help me tremendously!

[Pagola44]

Curious why do you say mets showing up was no surprise?

[skimom]

You are such an inspiration beach sunrise!! I am so sorry that you got cancer but so thankful for how you have blessed all of us with what you have learned & experienced.. I truly believe God uses us all to help each other in some way and you are surely helping me in still believing that.


So congratulations on 5 years of beating this nastiness down!! With you reaching out and helping encourage and teach I am looking forward to many more of us being able to beat it down for 5+ years with you!!

[beach sunrise]

Pagola, expanded blood panels show it long before a scan will.
Skimom, thank you for all the support. I am so happy you have extra support and searching for things to help like the histotripsy (its also in my back pocket just in case). Its always good to plan ahead for different scenarios that could show up and be able to work faster on it.

[rp1954]

Four years on ADAPT +++ / ++++ with an anti-circulatory continunity, range, improvements, and lifestyle that your would be Folfiri-mab dispensers can only envy.
Congratulations on pulling out of the familiar spiral that was forming after Folfox failed you.

Having mets show up eventually 3 1/2 [yrs] into this fight was no surprise.
....Pagola, expanded blood panels show it long before a scan will.

The mets were there, in an ambiguous range for a while on your scans. Luckily you finally got a decisive opinion from a more highly experienced group of specialized doctors in Coswig's lung specialty hospital that tightly align their milder Rolles laser procedures' results on smaller mets, iffy to other groups. Other groups are stuck with a scan and experience base from smaller surgical windows with later, more drastic surgeries on larger, more defined mets, if the window doesn't close on them.

Pagola, expanded blood panels show it long before a scan will.

In fairness, beachsunrise and my wife have the added natural advantage of faaaaaar less distortion in their blood labs from their [chrono-immuno]chemo, so their labs' long range sensing capabilities make scans less critical and less diagnostically "lumpy".

[beach sunrise]

Thank you, Rp for support and believing in me that it was possible to stir down the road less taken. Yes, one met was there at dx but just sitting there at 3-4mm but was told its nothing at this point and "could" be debris (inhaled) or scar tissue. Mhmmm, then 3 1/2 yrslater it ws still there plus 3 more small 5mm. I am so glad I listened to my gut instincts!
My oncologist wasn't so sure about what I wanted to try but gave his approval 4 yrs ago. Most recent appt with him he said he didn't think cancer will kill me in two life times. All I could say was thanks in taking the chance with me to see if it works.
Getting spreadsheet updated to send to Germany and man I wish I had kept up with it this past year. Live and learn!

[Pagola44]

Thank you, Rp for support and believing in me that it was possible to stir down the road less taken. Yes, one met was there at dx but just sitting there at 3-4mm but was told its nothing at this point and "could" be debris (inhaled) or scar tissue. Mhmmm, then 3 1/2 yrslater it ws still there plus 3 more small 5mm. I am so glad I listened to my gut instincts!
My oncologist wasn't so sure about what I wanted to try but gave his approval 4 yrs ago. Most recent appt with him he said he didn't think cancer will kill me in two life times. All I could say was thanks in taking the chance with me to see if it works.
Getting spreadsheet updated to send to Germany and man I wish I had kept up with it this past year. Live and learn!

Sorry you've probably explained this somewhere but what exactly confirmed that it was malignant (the lung nodules?)
I've got a bad gut feeling about my lung specs as well

[beach sunrise]

Pagola, after Germany reviewed all my records starting at day 1 of dx. The evaluation was 2 are most definitely mets but they will take all 4. I never had a biopsy but their expertise confirmed it.
If you are worried then contact them and send all your records for review to them for peace of mind or confirmation of mets. They are top tier lung surgeons.

[Pagola44]

Pagola, after Germany reviewed all my records starting at day 1 of dx. The evaluation was 2 are most definitely mets but they will take all 4. I never had a biopsy but their expertise confirmed it.
If you are worried then contact them and send all your records for review to them for peace of mind or confirmation of mets. They are top tier lung surgeons.

Ok thanks I will look into this afte my next scan

[Green Tea]

1. Can lung metastases be removed by laser?

The first step is to send a brief history and copy / CD of a recent chest CT to Dr Rolle at:

Dr. Axel Rolle,
phone 0049 352365102,

Fackkrankenhaus Coswig GMbH, Neucoswiger Straße 21,
Coswig / Dresden D-01640 Germany.

https://www.karinaeide.com/lung-laser-tumor-resection-dr-rolle

[beach sunrise]

Dr.Rolle is retired. If you contact them it would be Dr. Kern as the contact.
Be sure to have ALL records; bloodowrk, treaments you have undergone (chemo and any other meds). path report, scans. Have them all in order by date so they don't have to sift, its time consuming.

[beach sunrise]

ND appt was good. No change in plan yet. PGE2 test and a few others are due. Those will tell if plan change is needed.
I also contacted the Burzynski Clinic in Houston about their amino acid/ peptide therapy. We shall see what they say.

[rp1954]

I also contacted the Burzynski Clinic in Houston about their amino acid/ peptide therapy. We shall see what they say.

I have watched Burzynski from the beginning, from an exotic 1970s, hopeful new technology by a young Polish emigre', launched in controversy with the medical powers that be. Whatever bright promise he had as a young researcher then, long ago diverted into a marketing and legal machine, largely stuck on a 1970s research possibility, consuming large amounts of cash with no therapeutic advantage for CRC.

BRI has had over 40 years to provide some kind of useful stats or details of success, where I'm pretty broad minded. Oncology in CRC has progressed a great deal since the 1970s, despite many its shortcomings that we discuss here. For CRC, Burzynski's published claims of results simply have not kept up as an interesting alternative offer, much less garnered a credible compelling case. Whatever slight, marginal success he may (or not) of had with brain cancers, it doesn't translate in CRC both in terms of benefit, and side effects.

If I was interested in his chemistry as an oral supplement, I'd still get the supplement and medical support from somewhere else at the first $ required.

[beach sunrise]

You read my mind, Rp!
I am just curious about the supplement phenylbutyrate and another one that I can't think of the name at the moment. I take butyrate so interested in the phenylbutyrate and difference between the two..
The amino-care supplement he suggests has everything I take seperately at much higher dosage. So, that one is not an interest.
I've been digging for CRC patient stories but haven't come up with any so far. Now I know why, thank you.
The clinic emailed back yesterday needing more information so will call them Monday.
Like you pointed out the cost is really a big factor depending on what it is.
Update: Just found on the net a good explaination between the two butyrates. They have totally different mechanisms of action. Burzynski Clinic probably doesn't have anything to offer for me.

[zephyr]

Congrats!