No longer NED - DEVASTATED

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mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: No longer NED - DEVASTATED

Postby mpbser » Tue Dec 11, 2018 2:59 pm

Thank you all for your input. My husband's surgeons at MGH were phenomenal and we are very glad he had his colectomy there.

Switching to MSK after this experience feels like a no brainer to us. We are on track with MSK to get in to see Dr. Kemeny.

We live equidistant to both Boston and NYC, so MSK is not much different for us travel-wise. I am from the suburbs of NYC and have family there we can stay with overnight when needed. Dana Farber would be an option but because I have read so many posts from people here recommending Dr. Kemeny, that's the route we hope to go. Just need to finalize the paperwork as I am still gathering them to send over there for the initial review.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: No longer NED - DEVASTATED

Postby mpbser » Tue Dec 11, 2018 4:40 pm

I just found out that a good family friend of ours father has been a patient of Dr. Kemeny. Family friend had been recommending MSK to us in the early stage of our journey but our preference had been Mass General or Dana Farber at the time. She credits Dr. Kemeny for saving her father's life. Apparently, his Stage IV CC was very widespread but he's now 5 years NED. We are definitely making the right decision.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

WarriorSpouse
Posts: 218
Joined: Tue Aug 16, 2016 9:02 pm

Re: No longer NED - DEVASTATED

Postby WarriorSpouse » Wed Dec 12, 2018 9:00 am

...It sounds like a great plan! Good luck and enjoy the sights of NYC together during the holidays as well. It is so beautiful down there this time of year. Go see the Radio City Show and/or catch a Broadway show while visiting there. I love NYC...Please keep us posted of your progress at MSK.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

NHMike
Posts: 2436
Joined: Fri Jul 21, 2017 3:43 am

Re: No longer NED - DEVASTATED

Postby NHMike » Wed Dec 12, 2018 6:41 pm

It sounds like a good way to go. I'm sorry that your husband had a recurrence but I'm sure that you'll both tackle it head on as before.
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

teacher2017
Posts: 267
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: No longer NED - DEVASTATED

Postby teacher2017 » Wed Dec 12, 2018 9:24 pm

Hi there- so sorry to hear this. This really worries me for myself but I want to reiterate something. I was told after my liver resection that there was no clear benefit to chemo afterwards. When you only have one met, they hope that it is over after that one met. It’s a crap shoot really. Yes I’d consider the hai pump if this has reoccurred. Don’t beat yourselves up on “we should haves” . Just deal with the now. Let’s hope he is operable. That’s the most important thing. Hang in there!
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea level-1.5 10/18
Cea level-1.2 12/18
Clear scan-12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level-1.2 6/19
Clear scan-6/2/19
Colonoscopy - 7/19 CLEAR
Cea level-1.5 8/19
Clear scan -8/19
Port removal-9/19
Cea level-1.2 10/19
Cea level-1.1 02/2020

Fetsching
Posts: 1
Joined: Tue Mar 17, 2015 4:21 pm

Re: No longer NED - DEVASTATED

Postby Fetsching » Wed Dec 12, 2018 10:50 pm

I’m sorry you found out that way. I always think “no news is good news” so it’s understandable that not getting an immediate phone call would lead you to think one way...
I have questions about this doctor that seems to be a liver whisperer? My husband, age 42, stage IV since 2014; was just declined from a trial today because the mets that were just discovered in his liver a few months ago decided to blow up over the last month. He’s out of standard of care and I’m feeling pretty desperate. He has cancer in his lymphs, colon and lungs- all stable and have been. I’m hoping we can get the liver healthy enough to get into a trial. Is this Dr. K worth consulting? We are at the University of MN. Have talked to the Mayo, been to Johns Hopkins , been to the U of Colorado, talked to the NIH. None of these specifically about his liver- just along the way. I don’t like the word “ incurable.”Thanks in advance for ANY advice on how to clean up his liver.

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: No longer NED - DEVASTATED

Postby mpbser » Fri Dec 14, 2018 6:57 am

I believe Dr. Kemeny is definitely worth consulting although I still have yet to meet her. I have heard many stories on here of people deemed incurable by their oncologists, with numerous liver mets, who have gone to her and are still alive and kicking.

HERE IS THE MOST LATEST UPDATE:

We went to Mass General yesterday to see husband's oncologist. We went over MRI results and saw the two spots of concern - one 1.6 cm suspicious and possible met in the caudate lobe and one 1.3 cm very likely a cancerous lesion/mass (I forget the term) in segment 6 in the right lobe. The MRI image for the caudate lobe lesion is very faint and indistinct. The oncologist couldn't see it but I spotted it out to him. He had actually even almost forgot about it when reviewing the MRI and we had to remind him of the fact that the radiologist had detected it. (Argh.)

The liver surgeon and oncologist recommended ablation of the certain 1.3 cm segment 6 met. The reasoning is that surgery is not an option at this time because it is too soon to do another liver surgery after his surgery January 28, 2018.

The 1.6 cm caudate lobe questionable spot needs a CT-guided needle biopsy, so my husband asked if everything can be done at one time: biopsy and ablate the 1.3 cm segment 6 met plus biopsy and ablate the 1.6 cm caudate lobe questionable spot. His thinking is that if they are going to take out a centimeter or so to biopsy it, why not also ablate the thing while in there? No sense in going in there to do the needle biopsy and NOT burn or freeze the lesion away. There really isn’t much risk beyond what is already being incurred from the biopsy itself.

So, the next step will be to kill-all-birds-with-one-stone, so long as the interventional radiologist, liver surgeon, and oncologist agree that this is the best course of treatment at the moment. It likely to take place ASAP after Christmas. The consensus of the oncologist and liver surgeon is we should deal with it quickly, but it’s not critical to upend our holiday with an emergency procedure.

Depending on the results of the biopsy, the ablation will most likely be followed by a chemo regimen to be determined.

In the meantime, I finally got all my husband's records to MSK late last night after we got in from Boston. Luckily we went to Boston because I don't know if the central records department maintains the particular record they needed. I had been waiting for the faxed request from the other day to get processed but who knows how long it would have taken.

We intend to go see Dr. Kemeny for a consultation assuming she agrees to see him. We want to hear what her recommendation would be, but, at the same time, we are not wasting any time moving forward at MGH to get the treatment he needs right away. From what I know about Dr. Kemeny, she is chemo-driven and I don't think that she would be recommending liver surgery right away at this time anyway, so having these ablations done as the first course of action as we sort out what chemo to do next seems to make the most sense.

Whether we switch over to MSK remains to be determined. If my husband is a good candidate for the HAI pump, then it's a no-brainer to switch. We now know that his Mass General oncologist is not chemo-aggressive, whereas MSK is. That might just be what my husband needs to nip this cancer in the bud.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Gravelyguy
Posts: 309
Joined: Thu Jul 05, 2018 6:03 pm

Re: No longer NED - DEVASTATED

Postby Gravelyguy » Fri Dec 14, 2018 7:18 am

Thanks for the update. Praying for the best possible outcome for you guys.

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!
6/17/20 clear scans CEA 1.1 still NED!

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: No longer NED - DEVASTATED

Postby mpbser » Fri Dec 14, 2018 7:43 am

Thanks, gravelyguy.

Could you tell me how many nodes were positive in your case? I notice you have a somewhat similar profile to my husband but did more chemo than my husband did. My husband's weak chemo regimen so far definitely has me a bit concerned.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

heiders33
Posts: 362
Joined: Sat Nov 04, 2017 11:08 am

Re: No longer NED - DEVASTATED

Postby heiders33 » Fri Dec 14, 2018 8:23 am

Is it really too soon to do another resection? I guess I don’t know much about liver operations. I would recommend getting a second opinion from one of the liver surgeons at MSK in addition to Dr K.
37 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU
7/19 - Clear CT
9/19 - Clear colonoscopy/colonography
10/19 - Clear CT
11/19 - CEA 9.8, PET abnormal, confirmed local recurrence

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

Re: No longer NED - DEVASTATED

Postby hiker » Fri Dec 14, 2018 9:02 am

mpbser wrote:We intend to go see Dr. Kemeny for a consultation assuming she agrees to see him. We want to hear what her recommendation would be, but, at the same time, we are not wasting any time moving forward at MGH to get the treatment he needs right away. From what I know about Dr. Kemeny, she is chemo-driven and I don't think that she would be recommending liver surgery right away at this time anyway, so having these ablations done as the first course of action as we sort out what chemo to do next seems to make the most sense.


My experience with Dr. Kemeny has shown that she considers EVERY possible treatment to get a person to NED. She's an oncologist, so of course her specialty is chemo driven (and she's the queen of HAI driven chemo). However, she understands this disease and how to treat it like no other doctor I've met in my journey. Her ultimate goal, from my experience and everyone I've spoken with who is treated by her, is to get a patient to surgery to remove the cancer. That may involve implanting an HAI pump first in order to shrink the tumors enough or it may just involve a few rounds of systemic chemo. Whatever she recommends as a treatment plan you can believe is in the best interest of the patient.

On my very first visit to MSK, I met with her and my surgeon. The two of them had already developed a treatment plan on getting me to NED. She will get surgeons, radiologists, and anyone else involved that she needs to get the best treatment plan in place.

The woman is amazing.

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: 309
Joined: Thu Jul 05, 2018 6:03 pm

Re: No longer NED - DEVASTATED

Postby Gravelyguy » Fri Dec 14, 2018 9:41 am

mpbser wrote:Thanks, gravelyguy.

Could you tell me how many nodes were positive in your case? I notice you have a somewhat similar profile to my husband but did more chemo than my husband did. My husband's weak chemo regimen so far definitely has me a bit concerned.



I only had 1 cancerous lymph node out of 25 they checked.

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!
6/17/20 clear scans CEA 1.1 still NED!

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: No longer NED - DEVASTATED

Postby mpbser » Fri Dec 14, 2018 6:46 pm

We got an appointment with Dr. Kemeny for right after Christmas. What a relief! Might just have a peaceful Christmas knowing we will be in good hands.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

SGNYC
Posts: 35
Joined: Mon Sep 03, 2018 9:20 pm

Re: No longer NED - DEVASTATED

Postby SGNYC » Sat Dec 15, 2018 12:12 am

Great news - we love our team at MSK - they all consult with one another so you’re in great hands with the benefit of additional expert reviews.
Wife to DH, 44
DX July 18 - RC at Rectosigmoid
Adenocarcinoma, Mod diff
T3N1M1
Stage IV (but MSK said not a true Stage IV at Dx)
Pos nodes: 1/18
1 Liver Met and 1 Lung Met - liver Met dead tissue at surgery, hence MSK M1 status
Baseline CEA value of 25, now 3.4
LAR (Robotic)/Liver resect(dead tissue), VATS lung - clear margins
Temp Ileo- Reversal Feb 19
Folfox - 5 Rounds Neoadj, 3 rounds Adj, then discontinued Oxali and 4 rounds just 5FU
NED and Reversal Feb 2019 - clear contrast CT, clear contrast MRI

Koreysue
Posts: 153
Joined: Mon Apr 30, 2018 2:36 pm

Re: No longer NED - DEVASTATED

Postby Koreysue » Sat Dec 15, 2018 2:50 am

Great news! Please keep us updated.
(I was wondering- Was it difficult to get the appointment?)
Korey
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 NED (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 NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8


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