Rejected at mskcc because of 3mm possible ling met

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supportingsister
Posts: 15
Joined: Sun Oct 16, 2011 3:26 pm
Facebook Username: elizabeth kirkpatrick mosier

Rejected at mskcc because of 3mm possible ling met

Postby supportingsister » Mon Sep 17, 2018 11:58 am

Hi my sister has been battling for 7 years. She currently has 7 inoperable >1cm on liver. She has been trying to get to mskcc for the hai pump. This morning they called her and said they would not see her due to a 3mm possible met on her lungs. Are there other hospitals that we should try?

martd
Posts: 128
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Rejected at mskcc because of 3mm possible ling met

Postby martd » Mon Sep 17, 2018 1:47 pm

I don't know of any that use HAI pump, any major cancer center is a good choice. Stay with research cancer centers. MD Anderson is ranked #1 in the country for cancer. Mayo Clinic is a good choice, Cleveland clinic, Dana Farber. There are many others. I received treatment at Mayo in Phoenix they did my surgery when it was looking like it was impossible. I think I've seen stories where people have had lung surgery also along with the HAI pump at MSK? I could be wrong. There are many people on this forum with alot more knowledge maybe someone can give you a list. I hope for the best for your sister and you find the treatment she needs

Dan
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Rejected at mskcc because of 3mm possible ling met

Postby rp1954 » Mon Sep 17, 2018 2:52 pm

Wow, that's really sad with such low visible tumor count and volume on the lungs. People have dealt successfully with far worse liver and lung combinations. Just not with standard practices, the average Joe, or Dr. No.

She needs to take immediate steps to preserve the low count. Most crucially, what marker information and panels does she have? e.g. CEA, CA199, AFP, and ALP, GGT, LDH, CBC [WBC, monocytes, lymphocytes, platelets], ESR, hsCRP, ferritin, cerruloplasmin (once and occasionally), 25 OH vitamin D (once and occasionally). These are all DIY lab orders, as needed. We found that chemistry to match the markers helps preserve and expand options. Importantly, we kept potent chemistries on the mets during the run up to surgeries, including even chemo close in before surgery, and after - none of it "standard practice". Not this 3-6 weeks off stuff (different chemistry and changes though, no Avastin). Real supernutritional chemistry makes markers/panels move, repair lesions and body parts, without as many restrictions or side effects.

This is an example that should often resolve with an aggressive multimodal, more technical approach than "standard care". For us, this has included expanded blood monitoring, multiple chemistry steps, and surgeries. However, I keep an eye out for other treatment options too.

Our general order of battle:
1. Do the expanded bloodwork
2. Add chemistries to the daily chemo (no excuses, like surgery or illness if done best).
3. Repeat 1 and 2 as frequently as necessary to see improvements, whether 10 days, 2-3 weeks.
4. Line up a surgical or other localized treatment (world class radiation, RFA etc ) for complete local removal in an area with the minimum residual trauma and inflammation possible. Surgery usually preferred.
5. Repeat 1-4 as needed,
6. Find drs that will help you, blow off insurance when necessary (lack of speed kills), shop costs and quality
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

Cmac1275
Posts: 55
Joined: Mon Aug 06, 2018 4:21 pm

Re: Rejected at mskcc because of 3mm possible ling met

Postby Cmac1275 » Mon Sep 17, 2018 6:00 pm

I echo what others have said. Seek out other cancer centers / doctors. Can’t speak to the lung met variable, but when my oncologist saw my liver CT scans during my original diagnosis, he wasn’t sure I’d be resectable. My liver was covered with several large patches of metastatic disease. Even after a very good response with FOLFOX/Avastin, I had a good amount of visible disease left. But the medical team at Duke Hospoital still green-lit the resection, removing my entire right lobe and part of my left lobe.
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

supportingsister
Posts: 15
Joined: Sun Oct 16, 2011 3:26 pm
Facebook Username: elizabeth kirkpatrick mosier

Re: Rejected at mskcc because of 3mm possible ling met

Postby supportingsister » Mon Sep 17, 2018 6:43 pm

Thank you

We are going to mskcc weds although they said no to the hai pump.
DAna Farber next Tues.


She’s in Boston. Stage 2 in 2011. Ned for 3 years. Cancer returned to her abdomen wall. Dana farther recommended chemo for the “remainder of her life” which they gave her a year. She’s since been at MGH. She had Hipecc that was very successful. Ned for 3 years. Reoccurrence + liver mets February 2018. Ablation was successful, but 7 liver mets returned in June and One 3mm lunch nodule (possible met) . As of last week’s scan, No growth to lung met. Liver mets grew slightly, but all under 1 cm. lHer dr wanted her at mskcc since he’s not satisfied what’s available at mass general

She’s willing to travel. Her insurance is not paying anything outside New England at the moment. She raised 40k in 2 days to pay for treatments. Md Anderson, UPenn? What other centers do folks recommend.

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Rejected at mskcc because of 3mm possible ling met

Postby Lee » Mon Sep 17, 2018 6:52 pm

Go to that Wed appointment. There are a few members here who had lung and liver mets, who were treated at MSK. It's a 2 stage surgery. I don't remember the exact sequence, but one surgery address lungs and something else, weeks later 2nd surgery address liver and something. Hopefully juliej will see this thread, she is one person who got these type of surgeries at MSK.

Don't take no the first time.

good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!


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