Calling all angels for a Christmas miracle

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Mohrfamily
Posts: 249
Joined: Tue May 22, 2018 4:04 pm

Calling all angels for a Christmas miracle

Postby Mohrfamily » Tue Dec 18, 2018 6:33 pm

DH and I just left Cleveland clinic having spoken to a colon specialist.

She was optimistic although the MRI we had given the liver surgeon also Cleveland clinic want uploaded properly. She shared the same views as our local oncologist. 3 nodes probably are nothing given the extensive improvement in his liver albeit there's still to much disease to operate.

She didn't see a need to change chemo because typically the best results are seen after 3 months but she said DH is the exception his scans get better or have gotten better every 3 months. His body is reacting to three chemo positively.

And yet... She finds it unlikely we will get anymore drastic results and he could stay on chemo still his body can't do it. She was more than halt to suggest presenting his case the the board of surgeons to get other opinions including a director or liver transplants be present.

Christmas is a week a way and DH and myself aren't feeling very cheerful and I am desperately hiding on to the shreds of positive news I have left. I need uplifting I need real accounts of your struggles that you persevered through please... That's the best gift I found hope to get this season.
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: Calling all angels for a Christmas miracle

Postby hiker » Tue Dec 18, 2018 8:15 pm

If his mets are only in the liver, please call MSK and try to get an appointment with Dr. Kemeny. The HAI pump could possibly get him operable.

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

Punky44
Posts: 438
Joined: Mon Oct 01, 2018 4:29 pm

Re: Calling all angels for a Christmas miracle

Postby Punky44 » Tue Dec 18, 2018 8:17 pm

You will be in my prayers this Christmas!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 2.1; 1.9; 2.6; 2.8
6/28/19 Reversal and port out
10/22/19: CT showed new nodules
1/28/20: CT showed nodules shrinking

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Gravelyguy
Posts: 300
Joined: Thu Jul 05, 2018 6:03 pm

Re: Calling all angels for a Christmas miracle

Postby Gravelyguy » Tue Dec 18, 2018 8:36 pm

Praying for you guys and I would 2nd what Hiker said.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!

Koreysue
Posts: 147
Joined: Mon Apr 30, 2018 2:36 pm

Re: Calling all angels for a Christmas miracle

Postby Koreysue » Tue Dec 18, 2018 9:38 pm

Yep- as hiker said... MSK dr. Kemmeny
Sounds like she is who you want for liver Mets
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8 :| My dr. wasn’t concerned, but I asked for a retest in 1 month

stu
Posts: 1345
Joined: Sat Aug 17, 2013 5:46 pm

Re: Calling all angels for a Christmas miracle

Postby stu » Wed Dec 19, 2018 6:44 am

Think the suggestion of the pump is the best yet . Given he responds so well .
We have hit many disappointing bumps . I truely believe my mum is still here because we sought out windows of opportunity and grabbed them with both hands . If there is something out there that will help him further . Do what you need to do .
There is a big bump on the road . But the bumps are what we climb on .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

User avatar
Jack&KatiesMommy
Posts: 613
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Calling all angels for a Christmas miracle

Postby Jack&KatiesMommy » Wed Dec 19, 2018 1:19 pm

I had numerous tumors (dozens) throughout my liver. I had a failed liver resection at MD And3erson (where I had my second opinion) because the liver surgeon opened me up and found dozens and dozens of tumors that were not visible on the C Scans I'd had. He told me that there was nothing that he could do so he closed me up. While recovering from that surgery, I had my records to sent to Nancy Kemeny at Memorial Sloan Kettering. She called me two weeks later and said she wanted to meet with me. I flew to NYC and she told me that she thought she could help me. Within a few weeks, I had a HAI pump and the colon tumor removed. Here I am 7 years later. She saved my life when everyone else said "just stay on chemo." Please....contact her.
Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

User avatar
juliej
Posts: 3106
Joined: Thu Aug 05, 2010 12:59 pm

Re: Calling all angels for a Christmas miracle

Postby juliej » Wed Dec 19, 2018 5:21 pm

Like your DH my body responded very favorably to chemo. I had major size reductions of both my liver and lung tumors at each scan. However, just like your DH, my local cancer center would not refer me to a liver surgeon. They basically said I would be on chemo for life (which they estimated to be 18 months).

I had a consultation with Dr. Kemeny at MSKCC and low-and-behold, her team said I was an excellent candidate for a liver resection and an HAI pump! All that steady shrinkage of my numerous tumors and the constant lowering of my CEA were indications to them that I had a chance. A few weeks after my consult I had a liver resection, and a few months after that, a double-lung resection. I wouldn't be alive today if it wasn't for them!

I've been in your head space. It's scary not knowing what will happen and even scarier not feeling like your doctors are doing all they can for you. Please consider getting a second opinion. There are places like MSK where they think outside the box and fight hard for Stage 4 patients. Too many cancer centers give up on us too fast. The sooner you see Dr. K the better since she likes to see patients when chemo is still working. An HAI pump could make all the difference.

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Mohrfamily
Posts: 249
Joined: Tue May 22, 2018 4:04 pm

Re: Calling all angels for a Christmas miracle

Postby Mohrfamily » Thu Dec 20, 2018 11:10 am

I want to thank all of you! You're all such strong people I admire you all. I don't really care what the board says at Cleveland Clinic in my mind I'm already done with them. They can meet they can discuss my hubby but I'm working on getting to NY!
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: Calling all angels for a Christmas miracle

Postby hiker » Thu Dec 20, 2018 11:45 am

If you get an appointment with Dr. Kemeny, it'll be the best Christmas present ever.

You'll most likely need a place local for chemo, so don't burn too many bridges. But if you're anything like me, the filter that's supposed to not let thoughts leave my mouth as spoken words doesn't always work (well, according to my wife it rarely works).

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

Gravelyguy
Posts: 300
Joined: Thu Jul 05, 2018 6:03 pm

Re: Calling all angels for a Christmas miracle

Postby Gravelyguy » Thu Dec 20, 2018 12:00 pm

If finances are an issue, contact the American Cancer Society. They can be of great help with expenses, lodging etc.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!

Mohrfamily
Posts: 249
Joined: Tue May 22, 2018 4:04 pm

Re: Calling all angels for a Christmas miracle

Postby Mohrfamily » Thu Dec 20, 2018 5:38 pm

hiker wrote:If you get an appointment with Dr. Kemeny, it'll be the best Christmas present ever.

You'll most likely need a place local for chemo, so don't burn too many bridges. But if you're anything like me, the filter that's supposed to not let thoughts leave my mouth as spoken words doesn't always work (well, according to my wife it rarely works).

hiker


I can relate although my out spoken moment in Cleveland was "you mean to tell me despite all his high numbers dropping, the dead spots you can see even from a bad angle, and the fact he continues to do well my husband has 30 months that is your best answer?" His actual chemo treatments are more local than Cleveland, they were consulting (assuming they would be our best bet BS).

We've been cleared for scheduling at MSK!
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

mariane
Posts: 677
Joined: Sun Sep 13, 2015 6:16 pm

Re: Calling all angels for a Christmas miracle

Postby mariane » Sat Dec 22, 2018 12:49 am

I am also Dr Kemeny's patient. I have been NED for over 2.5 years. I began my cancer adventure with 10+ liver mets. The largest 7.5cm. I had good response to systemic chemo. I was given maximum 2 years if I responded to chemo at diagnosis. I am still here dping good. I wish you a great consultation!
mom of now 11 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!


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