Treatment at MSK

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brokenwings
Posts: 101
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. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) 04/29: not optimally resectable, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
07/04: exploratory laparoscopy - necrosis of peri mets
4 more cycles
09/11: CT scan
09/12: last exploratory laparoscopy and final decision

Rock_Robster
Posts: 288
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, 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.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1apM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN+
08/19 - Missed liver spot
08/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 2
10/19 - Planned liver resection #2 & ileo reversal

NHMike
Posts: 2204
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: 288
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, 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/
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1apM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN+
08/19 - Missed liver spot
08/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 2
10/19 - Planned liver resection #2 & ileo reversal

brokenwings
Posts: 101
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. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) 04/29: not optimally resectable, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
07/04: exploratory laparoscopy - necrosis of peri mets
4 more cycles
09/11: CT scan
09/12: last exploratory laparoscopy and final decision

AlexandraZ
Posts: 34
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!

MeAndMine
Posts: 89
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: 244
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 found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

User avatar
ginabeewell
Posts: 296
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.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

AlexandraZ
Posts: 34
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.

zephyr
Posts: 244
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 found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin


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