When msk isnt within reach

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Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

When msk isnt within reach

Postby Trying » Tue Feb 05, 2019 9:32 pm

In canada and hear souch positive about msk. Im currently unoperable as i have perimet and liver mets on an artery. They keep saying we need to see how much they shrink to even look at surgery but it usially isnt an option if its spread yo more than one place. Im on my 3rd opinion. Im not covered by medical in tje usa as im a canada cotozen. Im a single mom so dont k ow how i would afford msk however if you have some stories of how msk could help when others could not ( similar to my situation) i could possibly look imto a loan. I have to beat this. I have a baby. Cpuld any of you share the cost. In canada all treatment is free so i have no idea what im looking at for consultation and surgery. Im discouraged. Im ay major cancer center and my dr is head of hospital
Maybe i should trust him?
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: When msk isnt within reach

Postby Mohrfamily » Wed Feb 06, 2019 5:47 am

If I've learned anything from the amazing people on here its don't lose hope and when there's a will there's a way. My DH is at the beginning on an MSK journey. We are a small country town family on a pretty tight budget but we agree anything is worth saving his life you can't think about hurt feelings or worry about money you can't put a price on being HERE. Others will probably have great advice financial or otherwise, I was told Dr. Kemeny sees patients from everywhere even Dubai!

The motto I leave you with is when there's a will there's a way. Keep the hope and positively alive.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

hiker
Posts: 139
Joined: Thu Aug 09, 2018 10:15 am

Re: When msk isnt within reach

Postby hiker » Wed Feb 06, 2019 8:18 am

Hey Trying,

There is no doubt cancer care is outrageously expensive - without great insurance over the past 2 years I'd be broke and living in a cardboard box (well, probably a tent in the mountains somewhere). But over my working career I've paid dearly for that insurance so I figure me and the insurance company are probably break-even at this point.

Getting a second opinion at MSK shouldn't be that expensive...send them your scans and files, fly down to NYC, and see what they say. The whole thing shouldn't be more than a thousand dollars. Have you contacted MSK to see if there's anything they can do to help you? Look up their financial assistance number on the website and give them a call. A lot of wonderful, generous people have contributed and continue to contribute millions to MSK so they can help those who can't afford to pay for treatment (these generous people are who some like to call the evil rich or the top 1%).

When I see Dr. Kemeny, the waiting room is filled with people from all walks of life (rich and poor, white and black, people from all over the world).

I wish you the best.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

cbsmith
Posts: 87
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: When msk isnt within reach

Postby cbsmith » Wed Feb 06, 2019 10:05 am

I live in Canada. I’ve been lucky to have my employer send me to the US to visit a cancer center for a second opinion. I haven’t been to MsK but I have been to Mass General twice, once at the beginning when I was stage 3B and again when I went to Stage 4. If I recalle correctly it was between $1000-1500 for the consult and meeting plus travel.

It may be worth it to call and see what the costs are, especially if you have liver involvement. I didn’t luckily and my local oncologist was following the standard that Mass General said was best as well.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC, KRAS mutant, MSS
09/14-04/15 - 12 rounds of FOLFOX
07/15-CT showed para-aortic lymph node, onc thght inflammation
10/15-DX Stage IV, CT lymph node tripled in size, 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin
11/17 - no chemo since. Lung growth minimal, lymph node is stable

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: When msk isnt within reach

Postby Pyro » Wed Feb 06, 2019 11:04 am

Trying wrote:In canada and hear souch positive about msk. Im currently unoperable as i have perimet and liver mets on an artery. They keep saying we need to see how much they shrink to even look at surgery but it usially isnt an option if its spread yo more than one place. Im on my 3rd opinion. Im not covered by medical in tje usa as im a canada cotozen. Im a single mom so dont k ow how i would afford msk however if you have some stories of how msk could help when others could not ( similar to my situation) i could possibly look imto a loan. I have to beat this. I have a baby. Cpuld any of you share the cost. In canada all treatment is free so i have no idea what im looking at for consultation and surgery. Im discouraged. Im ay major cancer center and my dr is head of hospital
Maybe i should trust him?


Breathe. MSK is good but they don’t live in a vacuum, everything they do in regards to treatment is available at other major centers, I had pretty good luck in Houston at MD Anderson. The frontline treatments are pretty standardized throughout USA and Canada, Oncologist just don’t make things up or wildly guess at treatment. I’m. not in Canada so I don’t know how healthcare works there, I’ll save my socialized medicine thoughts for a different web site but from what you said, the treatment you’re being offered sounds normal. The major cancer centers are great when you’re told no anywhere else. We put a lot of hope in our doctors, there are a few that have floated to the top of discussions here, especially at MSK, if you would have been on this site 2 years ago it was all about MD Anderson. One doc does not have all the answers, they study what the major centers publish and they are constantly learning.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

hiker
Posts: 139
Joined: Thu Aug 09, 2018 10:15 am

Re: When msk isnt within reach

Postby hiker » Wed Feb 06, 2019 11:19 am

Pyro wrote:Breathe. MSK is good but they don’t live in a vacuum, everything they do in regards to treatment is available at other major centers, I had pretty good luck in Houston at MD Anderson. The frontline treatments are pretty standardized throughout USA and Canada, Oncologist just don’t make things up or wildly guess at treatment. I’m. not in Canada so I don’t know how healthcare works there, I’ll save my socialized medicine thoughts for a different web site but from what you said, the treatment you’re being offered sounds normal. The major cancer centers are great when you’re told no anywhere else. We put a lot of hope in our doctors, there are a few that have floated to the top of discussions here, especially at MSK, if you would have been on this site 2 years ago it was all about MD Anderson. One doc does not have all the answers, they study what the major centers publish and they are constantly learning.


Except for the fact that at MSK, Trying may be able to get the HAI pump to destroy her liver mets and get her to resectable which isn't available everywhere else nor are other oncologists as experienced with it as Dr. Kemeny in particular (with an 80% 5-year survival rate and 60% 10-year which is outstanding) and MSK in general.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery


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