CT Scan today

[skb]

Very upsetting to hear
Praying for you beach
This makes me think supplements don't even help much ;(
I'm on turkey tail, vitamin d, tumeric etc. I wonder if if even does anything?

Pagola44,
Please do not jump to the conclusion that supplements don't help much. Everyone's body biology and disease stage is different and it could have varying effectiveness on different people. Personally, I am not sure whether they help or not.

Regarding supplements, there is one thing I want to share with you though. And that is to try to ensure that the products we use are minimally tainted.
I saw this article on npr today about how the additional dye that vendors add on to turmeric was responsible for lead posioning-
https://www.npr.org/sections/goats-and- ... bangladesh

I asked my oncologist about Turkey tail mushrooms and his advice was that it could be a risk taking it during chemo because he does not know yet whether it enhances or reduces the effectiveness of chemotherapy. So I backed off although I wanted to take it. There was a Netflix show by name Fantastic Fungi. It seemed to advertize the healing and calming power of mushrooms.


The world cancer research international posted new guidance for people living withcolorectal cancer here-
https://www.wcrf.org/latest/news-and-up ... al-cancer/
It says:
"People diagnosed with colorectal cancer should consider increasing their dietary intake of wholegrain foods, and reducing their sugary drink intake."

Good luck in your journey. Your journey is starting and I pray it does not get worse.

[zephyr]

Let me start with a disclaimer: I may not know what I'm talking about. That being said, if you decide to go back to Germany, you ~may~ want to consider discussing with Dr. Kern or another surgeon the complications of having multiple thoracotomies. My first two surgeries were in Germany and then I had a third one at MSK towards the end of Covid when I was less comfortable traveling internationally. During/after the third surgery, there were comments about getting around scar tissue from the prior surgeries. It's my understanding (and I could easily be wrong about this) that you can only go in so many times before it becomes too much of a mess to navigate. If that's correct, you may want to be more strategic in how you time a return to Coswig with the thought that this might be the last time Germany is an option. For example, and I'm just typing off the top of my head here, maybe you want to have a PET scan before you consider surgery, or maybe you want to have a minimum size of all nodules or something. This is not an issue for you but it might help show what I mean about being strategic: when I went, I had one small nodule in my right upper lobe that the former head of thoracic surgery at a major U.S. cancer center told me he didn't think he could identify and remove on its own (without taking a section). It was just too small. Dr. Kern was able to remove it but I got the feeling even he was a little surprised at his success. If I had gone to Germany with that tiny nodule thinking it might be my last chance with the laser, would I have waited until it was a little larger? Maybe...

Whatever decision you make, you'll have all of us supporting and cheering you on.

[skb]

zephyr,
I was studying your signature. Would you say that your lung nodules have been stable since you started the Folfox/Avastin regimen few years ago?

I am being hopeful that it would give me few more years if I am prescribed that regimen.

[zephyr]

zephyr,
I was studying your signature. Would you say that your lung nodules have been stable since you started the Folfox/Avastin regimen few years ago?

I am being hopeful that it would give me few more years if I am prescribed that regimen.

More like stable-ish. I've been bouncing between Folfiri/Avastin and Xeloda/Avastin. When we start to see too much progression on Xeloda/Avastin, then we switch back to Folfiri/Avastin to knock it down. I usually get a good response on Folfiri/Avastin but it wears me out after a while so then we switch back to Xeloda/Avastin which is very tolerable for me. So far I've been very lucky repeating treatments. All of that said, I have only the highest praise for my oncologist but I've also been working with a gifted FABNO naturopathic doc and with an awesome Chinese herbalist, and I believe those have been a large part of my success.

[roadrunner]

Zephyr:

I just wanted to comment on how inspiring your success is. That’s a lot of years, and it sounds like you’ve had at least a reasonable QOL despite all the chemo. I wish you many more good years!

[zephyr]

Zephyr:

I just wanted to comment on how inspiring your success is. That’s a lot of years, and it sounds like you’ve had at least a reasonable QOL despite all the chemo. I wish you many more good years!

Thank you, Roadrunner. Like everyone else, QOL ebbs and flows - and there have been some brutal lows - but overall, it's been good.

[Bianca10]

zephyr,
I was studying your signature. Would you say that your lung nodules have been stable since you started the Folfox/Avastin regimen few years ago?

I am being hopeful that it would give me few more years if I am prescribed that regimen.

More like stable-ish. I've been bouncing between Folfiri/Avastin and Xeloda/Avastin. When we start to see too much progression on Xeloda/Avastin, then we switch back to Folfiri/Avastin to knock it down. I usually get a good response on Folfiri/Avastin but it wears me out after a while so then we switch back to Xeloda/Avastin which is very tolerable for me. So far I've been very lucky repeating treatments. All of that said, I have only the highest praise for my oncologist but I've also been working with a gifted FABNO naturopathic doc and with an awesome Chinese herbalist, and I believe those have been a large part of my success.

If you don’t mind me asking, how long between switching between folfiri & xeolda have you had?

Not all consultants are too keen on rechallenging, and I haven’t heard of treatments being rechallenge multiple times so I’m really interested.
Normally they say at least a year off treatment before rechallenging it.

[zephyr]

If you don’t mind me asking, how long between switching between folfiri & xeolda have you had?

Not all consultants are too keen on rechallenging, and I haven’t heard of treatments being rechallenge multiple times so I’m really interested.
Normally they say at least a year off treatment before rechallenging it.

1-2 years. Twice there have been surgeries so I've been off all chemo for some period. This last time I went straight into Xeloda from Forfiri. I can usually get at least a year on Xeloda.