mCRC Stage IV mets to LV and LN - what can we do more?

[beach sunrise]

Test failed due to not enough cancer cells in the radiated tumour.
Nagourney was an ass to be blunt so no I did not consult with him further. He basicly thought he would own my cancer and treatment and nothing up for discussion.

[IM64]

Ok, thanks for feedback.

[rp1954]

We've had a lot of back and forth at the Infection and Markers thread on data, conditioning, sampling and (y)our setups, with the shift into Folfiri++.
With the ++ added to Folfiri, you're trying to incrementally improve Folfiri's performance and side effects, and get a direct read of benefit and toxicity. If Folfiri is problematic, maybe shift to ADAPT +++/++++. With high enough quality actions and good fortune, turn your setup into a data, decision, and improvements machine.

So where are you now, and where are you aiming?

Plan A
Try to gain some incremental improvements, some measurable responses, and stabilize your wife's situation as long as possible with higher quality life. Try to maintain(Folfiri) or improve (ADAPT?) basic immune functions. Buy time to find and build decisive opportunities, see Plan B.

Plan B
Try to find, and execute on, 1 or 2 major (giant) steps that create a major breakout from the usual prognosis, and palliative thinking.
Normally gaining an unusual or advanced surgery and follow on treatment is my first hope.
Even at this late stage, other members here have pulled miracles out of a dire situation without surgery, see sleen (TIL) and terminal tx reversals with Keytruda trials and it's clinical introduction. Also Jimmy Carter's brain mets are in this category, going terminal 8 years ago.

If you don't see immediate, huge response with Folfiri toward a complete response, your wife's likely options center around finding a thermonuclear grade immune treatment or magic bullet chemistry.

[roadrunner]

IMO that’s a clear, helpful strategy post, rp1954. Thanks! One thing I’d add:

IM64: If you’re interested and able to do so, research into clinical trials should not be delayed. Members have had remarkable, late(er)-stage success there, including prayingforccr’s recent promising results. Clinical trials are their own separate discipline for us patients, and it can be difficult to identify, qualify for, or manage them to our optimal interests, but they can also be literal lifesavers, and cancer therapy is moving much faster now than it did in the past. Just something to think about. [Sorry if someone discussed this above or in another thread, just wanted to make sure it was mentioned next to rp1954’s post.]

[IM64]

Thank you rp1954 for summarizing the results and the proposed plan.

Our goal #1 is stop the progression (if it was, because the CT scan says no) and reverse CEA trend from Up to Down.

Goal #3 is a "Plan B", and we absolutely agree with it. We understand it will not be easy to find doctor(s) who will see more than just palliative. Now they all become silent when we start to talk about any future treatment plans. We're not ready to agree with it.
This stage will take time, and to get that time we should to make right choice in step 2.

Step #2 is questionable for me. There are two ways:
a. Stay with the Folfiri as long as possible, either before Folfiri stops working or the side effects become intolerable. Leave Xeloda for third line treatment.
b. Switch to Xeloda right away after step 1 and stay with the Xeloda as long as possible. Have the possibility to return to Folfiri if something goes wrong.

My main doubt with "a" is Folfiri is too heavy to continue with it long time and maintain immune system in a more or less working condition. And probably Xeloda chances will be minimal after a long time with Folfiri. But there's a chance to get a good response with Folfiri.

With Xeloda is only one question - how good will be response and how long it will work. We'll never know if not try. Our oncologist doesn't mind to switch to Xeloda if we want. He is more pessimistic about Xeloda vs Folfiri, but he never count all our +++ we add.

[IM64]

If you’re interested and able to do so, research into clinical trials should not be delayed.

Thanks for reminding about trials. I definitely need to keep an eye on that to not miss possible options.

One more thought about clinical trials - when I asked our oncologist about it, he said its too early. He suggest to think about trials when all official treatment is done.
I'm interesting in experienced people opinion - Are you agree with that?
Thanks

[roadrunner]

From NCI (National Cancer Institute):

“Any time you or a loved one needs treatment for cancer, clinical trials are an option to think about. Trials are available for all stages of cancer. It is a myth that they are only for people who have advanced cancer that is not responding to treatment. Ask your doctor about clinical trials that might be an option for you. You can also look for trials yourself by visiting Find NCI-Supported Clinical Trials.”

Moreover, you say your doctors—presumably including the one who’s discouraging consideration of trials—“go silent when you talk about future treatment plans.” That tells you all you need to know about his/her perspective. In my view, research and consideration of options are great ideas in this circumstance. They do involve significant time and effort, but they can be a valuable part of an overall strategy. Whether you choose to go that way or not. Information and choices are your friends. Why shut them out?

[IM64]

It makes sense. Thanks for your opinion and input!

[Rock_Robster]

If you’re interested and able to do so, research into clinical trials should not be delayed.

Thanks for reminding about trials. I definitely need to keep an eye on that to not miss possible options.

One more thought about clinical trials - when I asked our oncologist about it, he said its too early. He suggest to think about trials when all official treatment is done.
I'm interesting in experienced people opinion - Are you agree with that?
Thanks

Just to add to this one - I’m working with a couple of trial doctors/researchers, and their general rule is that any kind of progression on any line of treatment is reasonable point to consider enrolling in a trial. They all have different eligibility criteria - some you can’t have had too much chemo, others you have to have had a lot of chemo - so it’s good to always be watching this. The ‘progression’ trigger is mainly that most PIs will be reluctant (ethically) to stop a treatment that is working in order to pursue an experimental option, particularly early-phase trials.

Good luck,
Rob

[rp1954]

A boy scout ("be prepared") would still be ready to make the ADAPT/capecitabine switch after 1-2 cycles Folfiri, with capecitabine + celecoxib in hand.

How easy is it to go behind his back to find another local oncologist without him finding out? E.g. so nationally/provincially consolidated new office notifies old office, especially at the point of the xeloda prescription? Sooner or later?

He suggest to think about trials when all official treatment is done.

First, I'd get clarification of the likely official treatment series in Canada/Ontario. In 2010, the lack of reimbursed provincial choices could be pretty f'g ugly. E.g. is your wife even legally eligible to restart Avastin or a more advanced antibody.?

Second, does the health scheme pay for colony stimulating drugs like Neulasta?

Also if xeloda stumbled for any reason, is a regular Canadian able to restart Folfiri or Folfoxiri with avastin or a potentially better biosimiar after a chemo pause? Most of the other official 3rd line drugs made me comfortable with DIY off label.

I might not be too thrilled about official Canadian options, but I would know them now. When you wait and depend on std drs and administrators, especially if they aren't giving answers, you're being controlled and drawn into a black hole.

And I'd learn the ropes to at least identify the major trial options this year.
You're going to be busy for a while.

[mobrouser]

As far as I know Ontario Health Care doesn't pay for Neulasta, however I was able to receive Neupogen covered by OHIP. I had to file some forms at my cancer centre, but it was relatively easy.

I haven't tried but I suspect that seeking a new oncologist under OHIP would be troublesome unless you have moved a significant distance from your current location.

[IM64]

Just to add to this one - I’m working with a couple of trial doctors/researchers, and their general rule is that any kind of progression on any line of treatment is reasonable point to consider enrolling in a trial. They all have different eligibility criteria - some you can’t have had too much chemo, others you have to have had a lot of chemo - so it’s good to always be watching this. The ‘progression’ trigger is mainly that most PIs will be reluctant (ethically) to stop a treatment that is working in order to pursue an experimental option, particularly early-phase trials.

Thanks Rob, I'll keep that in mind

[IM64]

A boy scout ("be prepared") would still be ready to make the ADAPT/capecitabine switch after 1-2 cycles Folfiri, with capecitabine + celecoxib in hand.

Actually celecoxib is already in hand (prescribed for me by 3rd party doc). Need to research about capecitabine. As I understand it may be needed to regulate dose above standard and avoid "free weeks".

How easy is it to go behind his back to find another local oncologist without him finding out? E.g. so nationally/provincially consolidated new office notifies old office, especially at the point of the xeloda prescription? Sooner or later?

I'm afraid officially it's not real to have 2 oncologists. We even don't have integrative doctors in Canada. I think (gues) easier to find drugs and use own protocol.

First, I'd get clarification of the likely official treatment series in Canada/Ontario. In 2010, the lack of reimbursed provincial choices could be pretty f'g ugly. E.g. is your wife even legally eligible to restart Avastin or a more advanced antibody.?

We asked and got answer - if drug was stopped due to progression (stop worked) or intolerable side effects (which are listed in Drug Monograph), it cannot be restarted.
For example we stopped Avastin due to bleeding and Folfox due to progression (according to the oncologist) so both are closed for us.

Second, does the health scheme pay for colony stimulating drugs like Neulasta?

Government pays only for approved drugs. Each province has their own list of approvals. Neulasta (pegfilgrastim) approved in Ontario for "Decrease the incidence of infection (i.e. febrile neutropenia) in patients with non-myeloid malignancies receiving myelosuppressive antineoplastic drugs."
Not sure if this applies to us - need to ask an oncologist.

Also if xeloda stumbled for any reason, is a regular Canadian able to restart Folfiri or Folfoxiri with avastin or a potentially better biosimiar after a chemo pause? Most of the other official 3rd line drugs made me comfortable with DIY off label.

That was our main question for onc at the last meeting. Short - officially not. If we stop Folfiri to switch to Xeloda, Folfiri is done. But... probably we can just pause Folfiri and use Xeloda as a maintenance for that time. Finish pause -> continue Folfiri - that is one way. Another one is as yours - start Folfiri second time, but with something else, and it can be considered as a new line/treatment. We discussed these options and he promised to clarify.

I might not be too thrilled about official Canadian options, but I would know them now. When you wait and depend on std drs and administrators, especially if they aren't giving answers, you're being controlled and drawn into a black hole.

1000%. That's the reason why I'm trying to get out of this circle!

And I'd learn the ropes to at least identify the major trial options this year.

This is my main concern about trials - we may be limited with all ++++ we are doing.
But I agree with roadrunner - being informed is a plus. Short research show possible trials that can be part of existing plan. For example Living Donor Liver Transplantation for Unresectable Colorectal Cancer Liver Metastases (unfortunately we are not candidate due to lung mets)

[IM64]

I haven't tried but I suspect that seeking a new oncologist under OHIP would be troublesome unless you have moved a significant distance from your current location.

Our oncologist often repeats you are always welcome to find another MD. I believe he will be happy if we move to another onc. And we have to ask him for a referral to another docs. We already asked a couple referrals for second opinion, but no one contacted us back. Looks like most of them want to "easy case" with likely happy end.

[rp1954]

I haven't tried but I suspect that seeking a new oncologist under OHIP would be troublesome unless you have moved a significant distance from your current location.

Our oncologist often repeats you are always welcome to find another MD. I believe he will be happy if we move to another onc.

My innermost self almost always says "ok", perhaps too readily, but that is a situational resource problem solved. Different situations, cities, countries, rules, sizes and availability matter.

we have to ask him for a referral to another docs. We already asked a couple referrals for second opinion, but no one ...

Sounds like you need some escape strategies and maneuver capabilities, especially for plan B, to breakout of the narrow, channelized network. For you, OHIP; for us, stingy HMOs.

One key to this may be how far you are willing and able to go (bi)weekly, monthly, or even once. e.g. NYC, Boston, Houston, etc. Another major key is what you can do remotely - research, telephone, (international) telemedicine, and, at home.

Can you elaborate more on these factors because it affects finding, focusing on, choosing and doing plan B options.