PET/CT tomorrow

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DarknessEmbraced
Posts: 3746
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: PET/CT tomorrow

Postby DarknessEmbraced » Sat Dec 17, 2022 7:56 am

I hope you get good news and that you're a candidate. *hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Bpaint
Posts: 42
Joined: Sun Oct 11, 2020 8:54 pm

Re: PET/CT tomorrow

Postby Bpaint » Thu Dec 22, 2022 11:58 am

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.
husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
Liver, colon and node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix lungs stable about 6 months; all other areas stable
Start Folfiri + avastin 1/22
Stop Folfiri (lungs stable 6 mos); start Vectibix 7/22
Stop Vectibix 12/22 (lungs stable 5 mos this time)
SBRT on lung Mets scheduled for 1/22, will restart Folfiri

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beach sunrise
Posts: 765
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Thu Dec 22, 2022 2:45 pm

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.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

Bpaint
Posts: 42
Joined: Sun Oct 11, 2020 8:54 pm

Re: PET/CT tomorrow

Postby Bpaint » Tue Jan 03, 2023 10:03 am

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!
husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
Liver, colon and node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix lungs stable about 6 months; all other areas stable
Start Folfiri + avastin 1/22
Stop Folfiri (lungs stable 6 mos); start Vectibix 7/22
Stop Vectibix 12/22 (lungs stable 5 mos this time)
SBRT on lung Mets scheduled for 1/22, will restart Folfiri

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beach sunrise
Posts: 765
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Tue Jan 03, 2023 5:07 pm

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.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

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beach sunrise
Posts: 765
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Thu Jan 05, 2023 12:10 pm

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.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

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beach sunrise
Posts: 765
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Wed Jan 11, 2023 11:29 am

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.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

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beach sunrise
Posts: 765
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Sun Jan 22, 2023 4:20 pm

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.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

prayingforccr
Posts: 478
Joined: Sun Jun 28, 2020 4:44 pm

Re: PET/CT tomorrow

Postby prayingforccr » Sun Jan 22, 2023 5:12 pm

beach sunrise wrote: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?
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

utahgal7
Posts: 115
Joined: Fri Sep 11, 2020 12:04 pm

Re: PET/CT tomorrow

Postby utahgal7 » Mon Jan 23, 2023 8:53 am

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
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

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beach sunrise
Posts: 765
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Thu Jan 26, 2023 5:34 pm

I am so
Last edited by beach sunrise on Thu Jan 26, 2023 5:39 pm, edited 1 time in total.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

User avatar
beach sunrise
Posts: 765
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Thu Jan 26, 2023 5:34 pm

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.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

User avatar
beach sunrise
Posts: 765
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Fri Jan 27, 2023 4:09 pm

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.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

rp1954
Posts: 1641
Joined: Mon Jun 13, 2011 1:13 am

Re: PET/CT tomorrow

Postby rp1954 » Sat Jan 28, 2023 5:27 pm

beach sunrise wrote: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.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

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beach sunrise
Posts: 765
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Sat Jan 28, 2023 9:48 pm

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)
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test


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