Treatment at MSK

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brokenwings
Posts: 147
Joined: Mon Jan 07, 2019 1:50 am

Re: Treatment at MSK

Postby brokenwings » Wed Sep 11, 2019 2:37 am

FWIW, HAI pump is available in France.
Here's a link to the international patients section in Gustave Roussy Insitute:

https://www.gustaveroussy.fr/en/international-patients.
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Treatment at MSK

Postby Rock_Robster » Wed Sep 11, 2019 3:49 am

brokenwings wrote:FWIW, HAI pump is available in France.
Here's a link to the international patients section in Gustave Roussy Insitute:

https://www.gustaveroussy.fr/en/international-patients.

That’s super interesting brokenwings, thanks for sharing.
My understanding (potentially incorrectly) is that FUDR is not approved in the EU; and from a few recent papers it looks like Gustave Roussy might be using oxaliplatin-based HAI? No idea how the safety/effectiveness compares between the two.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Treatment at MSK

Postby NHMike » Wed Sep 11, 2019 7:37 am

Rock_Robster wrote:
brokenwings wrote:FWIW, HAI pump is available in France.
Here's a link to the international patients section in Gustave Roussy Insitute:

https://www.gustaveroussy.fr/en/international-patients.

That’s super interesting brokenwings, thanks for sharing.
My understanding (potentially incorrectly) is that FUDR is not approved in the EU; and from a few recent papers it looks like Gustave Roussy might be using oxaliplatin-based HAI? No idea how the safety/effectiveness compares between the two.


I could not imagine Oxaliplatin-based HAI.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Treatment at MSK

Postby Rock_Robster » Wed Sep 11, 2019 8:06 am

NHMike wrote:
Rock_Robster wrote:
brokenwings wrote:FWIW, HAI pump is available in France.
Here's a link to the international patients section in Gustave Roussy Insitute:

https://www.gustaveroussy.fr/en/international-patients.

That’s super interesting brokenwings, thanks for sharing.
My understanding (potentially incorrectly) is that FUDR is not approved in the EU; and from a few recent papers it looks like Gustave Roussy might be using oxaliplatin-based HAI? No idea how the safety/effectiveness compares between the two.


I could not imagine Oxaliplatin-based HAI.

It sounded rough to me too, but here it is... https://www.ncbi.nlm.nih.gov/m/pubmed/30081865/
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

brokenwings
Posts: 147
Joined: Mon Jan 07, 2019 1:50 am

Re: Treatment at MSK

Postby brokenwings » Wed Sep 11, 2019 8:35 am

Rock_Robster wrote:
brokenwings wrote:FWIW, HAI pump is available in France.
Here's a link to the international patients section in Gustave Roussy Insitute:

https://www.gustaveroussy.fr/en/international-patients.

That’s super interesting brokenwings, thanks for sharing.
My understanding (potentially incorrectly) is that FUDR is not approved in the EU; and from a few recent papers it looks like Gustave Roussy might be using oxaliplatin-based HAI? No idea how the safety/effectiveness compares between the two.



I have no idea either...
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

AlexandraZ
Posts: 178
Joined: Fri Aug 23, 2019 8:25 am

Re: Treatment at MSK

Postby AlexandraZ » Thu Sep 12, 2019 4:43 am

brokenwings wrote:FWIW, HAI pump is available in France.
Here's a link to the international patients section in Gustave Roussy Insitute:

https://www.gustaveroussy.fr/en/international-patients.

That’s super interesting brokenwings, thanks for sharing.
My understanding (potentially incorrectly) is that FUDR is not approved in the EU; and from a few recent papers it looks like Gustave Roussy might be using oxaliplatin-based HAI? No idea how the safety/effectiveness compares between the two.[/quote]



Thanks for the data, both of you! We don't have any experience with oxaliplatin, but it sounds pretty rough whereas FUDR seems to have few side effects with the HAI pump. I think we'll start at MSK and see what they say. We are by no means rich, but we are young and we have the rest of our lives to pay back debts. The most important thing is obviously to do whatever it takes to make the rest of his life long!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

MeAndMine
Posts: 149
Joined: Mon Aug 05, 2019 2:40 pm

Re: Treatment at MSK

Postby MeAndMine » Thu Sep 12, 2019 3:28 pm

We are by no means rich, but we are young and we have the rest of our lives to pay back debts. The most important thing is obviously to do whatever it takes to make the rest of his life long!

That is the best attitude Alexandra, and you are so right! It's hard to decide what to do and how to do it but you are on top of it and doing the research to land you all in the right place.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

Re: Treatment at MSK

Postby zephyr » Tue Sep 17, 2019 3:55 pm

AlexandraZ wrote:Yikes, that's a lot of money. But that's the kind of ballpark figure I was expecting. I guess we're lucky it's all free here in Denmark.

As I think someone else mentioned, ask about a cash pay price. Even U.S. citizens who have insurance but with high deductibles sometimes pay cash out of pocket upfront because the cost is less as a cash pay than the deductible they will pay if it goes through insurance. It is sometimes a significant savings.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

User avatar
ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: Treatment at MSK

Postby ginabeewell » Wed Sep 18, 2019 1:17 am

AlexandraZ wrote:
Thanks for the data, both of you! We don't have any experience with oxaliplatin, but it sounds pretty rough whereas FUDR seems to have few side effects with the HAI pump. I think we'll start at MSK and see what they say. We are by no means rich, but we are young and we have the rest of our lives to pay back debts. The most important thing is obviously to do whatever it takes to make the rest of his life long!


If I were paying out of pocket, I might do a consult at MSK and then check out this pump trial at NIH:

https://clinicaltrials.gov/ct2/show/NCT03366155

Believe if you opted to go for the trial and qualified, treatment would be covered and I had heard secondhand travel too. You could even ask MSK what they thinknof you participating.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

AlexandraZ
Posts: 178
Joined: Fri Aug 23, 2019 8:25 am

Re: Treatment at MSK

Postby AlexandraZ » Wed Sep 18, 2019 12:57 pm

zephyr wrote:
AlexandraZ wrote:Yikes, that's a lot of money. But that's the kind of ballpark figure I was expecting. I guess we're lucky it's all free here in Denmark.

As I think someone else mentioned, ask about a cash pay price. Even U.S. citizens who have insurance but with high deductibles sometimes pay cash out of pocket upfront because the cost is less as a cash pay than the deductible they will pay if it goes through insurance. It is sometimes a significant savings.


Oh thanks, good to know! We'll definitely ask for that then. We have a lot of people who are REALLY rooting for Jesper, and I think we can work it out somehow to get a lump sum, especially if it is cheaper that way.

We're waiting for all the documents from the hospital now...hopefully it goes quickly! They said they would send the CT scans with regular mail, so I hope it goes relatively quickly.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

Re: Treatment at MSK

Postby zephyr » Wed Sep 18, 2019 1:04 pm

AlexandraZ wrote:
zephyr wrote:
AlexandraZ wrote:Yikes, that's a lot of money. But that's the kind of ballpark figure I was expecting. I guess we're lucky it's all free here in Denmark.

As I think someone else mentioned, ask about a cash pay price. Even U.S. citizens who have insurance but with high deductibles sometimes pay cash out of pocket upfront because the cost is less as a cash pay than the deductible they will pay if it goes through insurance. It is sometimes a significant savings.


Oh thanks, good to know! We'll definitely ask for that then. We have a lot of people who are REALLY rooting for Jesper, and I think we can work it out somehow to get a lump sum, especially if it is cheaper that way.

We're waiting for all the documents from the hospital now...hopefully it goes quickly! They said they would send the CT scans with regular mail, so I hope it goes relatively quickly.


We had a friend on your side of the pond who needed to travel to Thailand for treatment. He used chuffed.org (crowd funding) to raise the money.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin


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