PET/CT tomorrow

[DarknessEmbraced]

I hope you get good news and that you're a candidate. *hugs*

[Bpaint]

Beachsunrise—did Germany give you any indication how long the evaluation would take them? We are also waiting to here from them about YAG surgery and wondering how long the wait will be.

[beach sunrise]

Hi Bpaint, not sure.
Just sent everything last week.
Sent 3 1/2 yrs of medical records, 3 1/2 yrs of bloodwork spreadsheet. 2 scans.
And it is the holidays.
I will let you know when I hear from them and pllease let me know from your side too.

[Bpaint]

Well, my husband isn’t a candidate. I got this response from Dr Kern this morning:

“Thanks for sending us the CT scans! Unfortunately, there are too many nodules in both lungs, many very small ones and centrally located; that means that it is very unlikely that we can detect and resect them all completely. Laser metastasectomy is only useful and makes sense if a complete resection of all nodules can be accomplished; otherwise there is no bebefit for survival of the patient.”

I hope you get better news!

[beach sunrise]

I am so so sorry your husband was not a candidate. If he had a centrally located node then I might be in same boat as mine says centrally located.
Signatera is not picking up the lung met. It is neg again.
Lab corp lost my blood draw so having go redo tomorrow. Took them 3 weeks to let anyone know.

[beach sunrise]

One of my labs are in, just the general order.
CEA is down 5 more points to 17.7 from 26.x (Oct result), all else looks pretty good. I started back on chronomodulated xeloda dosing about 2 weeks ago. Hammering hard on lung nodes with supplements for over a month now.
I have no recent labs to compare it to as my last one was lost so hopefully it stays moving in the right direction with chronomodulated and a variety of up dosing dupplements.
Still no word from Germany. I did send them 3 1/2 yrs worth of blood data, scans, reports.

[beach sunrise]

Appt with onc. His take on all the lung stuff is he is not convinced its CRC cancer still, it could be a new primary (lung cancer maybe). The ground glass lucincy could be inflammation/infection also instead of cancer. Whew
Lung surgeon wants SBRT asap but onc wants to wait until another scan in March to see if these 5mm nodes have grown.
He mentioned again tapering off xeloda and I said NO NO NO.
He said he's never had a patient so unusual. I tried to explain again about my beat down protocol ADAPT+++.
Still no word from Germany. I sent an email inquiring but haven't gotten repsonse back yet.
Consult with Boyd next week.

[beach sunrise]

Reply from Germany was they have not received packet. It is somewhere in the nets blackhole I guess. So sent hard copies thru DHL on the 13th. They will receive it Monday. So, another wait. Hopefully decision can be made fast.
Consults here have all been pretty much the same so far. If it is in fact a met or two, indeterminate at this time, chemo should be changed and see what happens. One consult offered SBRT and a different chemo plan. I am not about all that right now. Hopefully Germany has what I am looking for. If not a Rolles candidate I will most likely go with SBRT but not an added heavier chemo plan.
It's overwhelming at times with everything.

[prayingforccr]

Reply from Germany was they have not received packet. It is somewhere in the nets blackhole I guess. So sent hard copies thru DHL on the 13th. They will receive it Monday. So, another wait. Hopefully decision can be made fast.
Consults here have all been pretty much the same so far. If it is in fact a met or two, indeterminate at this time, chemo should be changed and see what happens. One consult offered SBRT and a different chemo plan. I am not about all that right now. Hopefully Germany has what I am looking for. If not a Rolles candidate I will most likely go with SBRT but not an added heavier chemo plan.
It's overwhelming at times with everything.

Ablation is a no-go?

[utahgal7]

beachsunrise:

Your plan for treatment in Germany sounds like a good one. If the Germany plan doesn't work out, are you open to participating in a clinical trial?

I am sorry your situation is overwhelming. I really admire your ability to persevere through it all.


Paige

[beach sunrise]

I am so

[beach sunrise]

I am so frustrated and extremely mad right now. Got a call from Germany to tell me all scans have been reviewed BUT the most recent very important PET/CT scan from Dec 2022 was not with it. I specifically made sure they knew that was the main one I needed and to add all the previous ones. They did not. I hope this wasn't done on purpose. Better not be.
Germany needs to review it before making their decision. I told them I will get it Monday and send asap. Good grief!!!! Does it sound promising so far, don't know.
My hospital wanted me there 3 weeks ago for SBRT saying "you know not everyone is eligible for this procedure" after I told them I can't make a decision until all opinions are in.
I have gotten CEA down to 15.9 from 26.x in two months by really hammering with ADAPT+++ by up dosing on certain supplements and switching back to chronomodulated chemo dosing.

[beach sunrise]

After appt today with ND I have decided if not a Rolles candidate I will still wait instead of jumping on SBRT. NLR sits at 7.2 which indicates cancer, inflammation or both. We added All Inclusive Great Tonify to hopefully lower NLR. It is a mix of Dang Gui, peony and Astragulas and should lower IL-6 when paired with Tian Hua Fen. I know its cancer but most markers look good and CEA has come down significantly. I will wait and see what next scan reveals. In the meantime I will hunt more consults.
I have appt Monday with lung surgeon and I know he won't be happy.
Whatever I decide I will have expanded bloodwork before and then 3 weeks after whatever the procedure. Things included will be lymphs, inflammation, CDs, NKs and some others. This is to gauge effects of treatment and a going forward plan.

[rp1954]

Lung surgeon wants SBRT asap but onc wants to wait until another scan in March to see if these 5mm nodes have grown.
He mentioned again tapering off xeloda and I said NO NO NO.
He said he's never had a patient so unusual. .

Lungs and Xeloda are, of course, different than my wife's para-aortic LN with UFT (pro-5FU), but I'm sure his head would explode to know we tapered down over the 12 hours before 2nd surgery (a faster clearing chemo, UFT is about 2x faster than xeloda).

Risks of uncontrolled bleeding and later wound healing prey on their careerist minds.
The thing I found out with the first surgery is how far they were behind on wound healing nutrition and chemical support vs the best functional medicine drs recommendations. Life Extension, other sites and papers, prior experience and practice, helped to get more from our surgeons and to maneuver more effectively.

[beach sunrise]

Most definiely their heads would spin and explode at yalls success. I am no where near what yall have successfully accomplished and they look at me like I am an alien or something. They only know what they know. I would say 90% of my cancer treatment is what I have done to help myself based on research, not them.
I have all the questions I can think of for Monday and bought a new recorder for the appt.
Some of the questions are the ones I presented that he blew off first time.
Some of the questions and would love feedback on more important questions to ask about SBRT:
% success rate in general and what you have seen with your patients vs growth after procedure or more tumors in same field
Risk/Benefit. Complications (bloodclots, ect) What is the aftercare protocol
Model type, year of machine
Example of bloodwork before and after to monitor effects. I know it causes alot of inflammation and lowers WBCs
Rx requirements/starting or stopping anything I take, chemo gap
How many sessioms
Just the node that lit up or the other suspect node also
Showme the images
What are other options that can be on the table (he knows I am consulting the 4 corners of USA and overseas)