Rolles in England

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beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Rolles in England

Postby beach sunrise » Mon Mar 27, 2023 2:40 pm

Since Germany has been silent with me since 2-20-23 I just thought about Rolles surgery at a clinic in England. Has anyone pursued that avenue? Any info I can get would be so appreciated.
I have an appt with Dr. Boyd, UCI on Friday about my case and MSK is setting up appt as of now. We will see what they got to offer this time. I refuused both opinions before so getting opiniom from different dr at MSK.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

User avatar
beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: Rolles in England

Postby beach sunrise » Mon Mar 27, 2023 5:41 pm

Dead end. Stopped in 2017.
Looked for Dr. Ldas in Cyprus but can not dins him there either.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

tcross
Posts: 9
Joined: Mon Mar 26, 2018 6:42 pm
Facebook Username: Tadd L Crosslin

Re: Rolles in England

Postby tcross » Mon Mar 27, 2023 10:13 pm

I finally got Dr Drewes to respond to me a couple of weeks ago and he told me systemic treatment was a better option over LAPM. He stated that he only sees growth in the nodules in my right lower lobe and wouldn’t not what to go after and what not to. He didn’t even attempt to tell me how many lung nodules I had, just denied me.
Dr. Boyd and Dr. Molena at MSK have both denied me as well. I thought Germany could go after as many as 100 nodules but I guess that is not the case anymore.
5/16 - Diagnosed Stage 3B. 5/11 LN involvement.
6/16 - 12/16 - FOLFOX.
12/16 - 6/19 - NED
7/2019 – peritoneum involvement. 8 rounds of FOLFOXFIRI.
1/2020 – CRS/HIPEC performed.
4/2020 – 4 rounds of FOLFOX.
7/2020 - Rise in CEA. Started Avastin/Xeloda 10-15 lung nodules.
11/2022– FOLFIRI after CEA was rising

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beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: Rolles in England

Postby beach sunrise » Mon Mar 27, 2023 11:25 pm

thank you for your update and responses of docs.
I have been doing the one person tango with Germany. They will not reply back. Sent two more emails today, one to Doreen and one to Dr. Kern.
How many mets do your have and how much have they grown?
MSK offered chemo first and a "lets see" approach but they have re-evaluated so not sure what they are coming up with this time.
Boyd is the other one, appt Fri.
My ND told me about a lung specialist mostly with lung cancer, Br. Bott, I believe is his name. I will contackt him tomorrow again to confirm name and pursue that also. He said one of his patient got NO,NO,NO from everyone but this doctor said yes to surgery and the patient is currently NED of lung cancer.
So frustrating!!!
I'm about to call a veterinarian :)
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

User avatar
beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: Rolles in Germany. It's a GO!

Postby beach sunrise » Tue Mar 28, 2023 1:01 am

Just got an email from Germany on my work email.
Dr. Kern has emailed 3 times so far to my private email and apparantly email provider has blocked every email.
I am a candidate for surgery!!! He wants one more CT scan within next 2 weeks to measure growth if any.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

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Sophy
Posts: 261
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: Rolles in England

Postby Sophy » Tue Mar 28, 2023 2:52 am

That is great news, I do hope that you can have the surgery, Coswig is a really good hospital and they will usually operate with curative intent.

Sophy
dx T3N1M0 Feb 2011 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
June 20 CT shows nodule, bronchoscopy confirms is scar tissue, still NED
Dec 20 stopping Xeloda continue celebrex, cimetedine
Aug 21,March 23 scans show still NED
March 2023 CURED - discharged from Oncology, no more scans or follow up

User avatar
beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: Rolles in England

Postby beach sunrise » Tue Mar 28, 2023 4:28 am

thank you for response, Sophy. I have studied your posts over the last few months as well as zephyr.
Germany is a GO but has to be open surgery. From our conversation it will be about a 6" incision on my side to laser the nodules. Reason being is one sits on my bronchial tube and another is in a difficult place (these are suspected mets by scan reading but I know they are def mets). The others (he found one more) he doesn't believe are mets but will get them also just in case.
I have bloodwork in a few hrs then more bloodwork and IVC at noon today and its our 36yr anniversary. What an anniversary present!
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: Rolles in England

Postby IM64 » Tue Mar 28, 2023 10:40 am

Perfect! You did it!!! That is the best news!
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

User avatar
beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: Rolles in England

Postby beach sunrise » Tue Mar 28, 2023 3:50 pm

Thank you, IM64!
It has been an intense self mediated protocol for over 3 years to stop/halt spread. I hope and pray this surgery will be the end of it but will still stay on protocol for several more years to be certain I give it no chance to set up camp again.
I am impressed with your exploration of protocols designed for your wife from the very beginning. I wish I had known about things when first dx'd. Way to go with advocating!!!
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

User avatar
beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: Rolles in England

Postby beach sunrise » Wed Mar 29, 2023 2:47 pm

Signatera is neg again.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

User avatar
Thedruid
Posts: 24
Joined: Tue Aug 21, 2018 1:49 pm
Facebook Username: theDruid

Re: Rolles in England

Postby Thedruid » Fri Mar 31, 2023 12:38 pm

Hello, Beach Sunrise

I am very happy you have been finally accepted to have surgery in Germany ! I hope everything goes well for you and that you finally get rid of these mets !

TheDruid
_____________________________________
Diagnosed 07/16/18, age 43
Colon Resection 03/08/18,
Stage 3B, T3N2aMO
Lymph-vascular invasion confirmed
6/16 lymph nodes
Port installed in 08/25/18
FOLFOX 08/18 - 2/2019
Liver met in 01/20. Stage 4. RadioAblation in 02/20
4 PALN + 01 nodule in the left lung found in 09/2021
Lymphadenectomy removed 04 PALN in 11/2021
Folfox (again) 11/21 - 05/22
Removed single lung met in 11/22
2 new "suspicious" nodules of 4mm in both lungs.. no growth until 04/23

User avatar
beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: Rolles in England

Postby beach sunrise » Fri Mar 31, 2023 5:53 pm

Thank you so much, TheDruid!
I hope this is the ticket to NED forever.
It's going to be a tough surgery for sure but I'm all in.
Contacted my old crossfit coach to get in better shape.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test


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