Possibly still NED...our story to date

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FightCRC
Posts: 24
Joined: Fri May 25, 2018 10:39 pm

Re: Possibly still NED...our story to date

Postby FightCRC » Wed Feb 27, 2019 6:40 pm

mpbser wrote:Well, if it's the case that her attitude has been cultivated by the fact that a large percentage of her patients are in a weak and desperate situation, e.g. "unresectable", then I have even less respect for her as a human being (not as an HAI FUDR expert) than I already have.


I'm going to address this from a different viewpoint. I don't expect to change your perspective at all, but I want to have it here so that anyone seeing this while they're doing their research on Dr. Kemeny and HAI can read everything and decide for themselves.

I don't feel she has this attitude because she can. I believe this is just how she is. She became a doctor in a time when the medical profession was completely male-dominated. That might partly explain things. Someone also theorized in the past that perhaps she's on the spectrum. I can see that, too. I do view her as a savant of sorts, with all that comes with that.

Because of her singular expertise and track record, her time is in incredibly high demand. According to multiple reports over the years, she sees 40-60 patients a day. This is entirely plausible as the waiting room is packed with folks from all over the world, from all walks of life, of all ages and ethnicities. Over an eight hour work day, that's as much as 7 patients an hour. Between reading labwork, scans, running around between exam rooms, eating lunch...it begins to make sense why face time with her is so limited. Anecdotal average: 2 minutes.

Now, would it perhaps be better if she saw less patients and had more time for the ones she did see? OK...but if she didn't see as many patients as she could, then she might not have been able to see us. Or you. This is also why we don't try to monopolize her time, because there are other people who are in our shoes who need her help.

As it is, we understand her working method. We know first-hand how thoroughly she reviews the scans and labwork. Her team asks us all the basic questions from us for her. That she sees us at all is largely a formality; I don't know that it's even necessary. I just want her eyes on our case, and again, from our experience, I know she's right on top of things.

In the end, she is someone who could have retired a long time ago, and/or segued into a career with an honorary position, giving highly-paid lectures (according to a nurse we talked to, her family has been begging her to retire for years). Instead, she has chosen to remain in the trenches to try to help as many patients as she can. Call me a cult member if you like. But taking everything into account, I'm entirely grateful she's still doing this. And yes, to me she is a hero.

(Last note: We originally consulted with Dr. Yuman Fong at City of Hope. He is a former colleague of Dr. Kemeny at MSK. Dr. Fong has made himself available to monitor our case, despite the fact that we're not his patient...we're not even in his hospital. We are completely flabbergasted at his kindness and generosity. Anyway, he just informed us that Dr. Kemeny has been communicating with him about our case. We would have had no idea she had done that if he hadn't just told us. It just further justifies our faith that she's working hard for us, even if we spend very little time with her in the exam room.)

mpbser
Posts: 751
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Wed Feb 27, 2019 7:51 pm

“No one ever gets more than a few minutes with her.” Simply not true. One patient recently had an hour with her and another an hour and a half. Another has regular contact with her by phone.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0, 2.9, 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows met
Resection & HAI Mar 7

radnyc
Posts: 340
Joined: Tue Apr 06, 2010 6:32 pm

Re: Possibly still NED...our story to date

Postby radnyc » Wed Feb 27, 2019 8:14 pm

The woman is 70+ years old. She might kick the bucket soon! What I’ve been trying to say is that she’s not the only oncologist there that can do this. The HAI treatment has been studied at MSK for decades. There are a large group of oncologists trained by Kemeny and others. Give her a break. My recommendation for anyone here that wants the HAI option at MSK is to just call them and get seen by them, don’t ask specifically for her. You probably won’t get her, but you’ll get someone trained by her team who is just as good and probably slightly more pleasant.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

MSKfan
Posts: 2
Joined: Thu Jun 28, 2018 2:42 pm

Re: Possibly still NED...our story to date

Postby MSKfan » Wed Feb 27, 2019 11:54 pm

Here is something not subjective, not an opinion: my son is still alive due to Dr. Kemeny. That is the bottom line.

ams5796
Posts: 2288
Joined: Fri Feb 06, 2009 10:07 am

Re: Possibly still NED...our story to date

Postby ams5796 » Thu Feb 28, 2019 11:30 am

I was treated by Nancy Kemeny a few years back. She was a tough cookie. I wasn’t there to make friends. I checked my ego at the door and let her take the wheel. I was desperate enough to put up with anything. I’m still standing as Elton John would say. I’d recommend her to anywho wants to survive their stage 4 diagnosis.
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

mpbser
Posts: 751
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Sun Mar 03, 2019 3:30 pm

On Wednesday, we leave for NYC for my husband's surgery at MSK Thursday. He's still not 100% sure he wants to go through with the pump and reached out to a liver surgeon friend for advice. Hopefully, we hear back. I spoke with my husband about the unresolved and unanswered questions we had for MSK, most importantly those regarding the evidence of “wedge-shape hyperenhancing areas in the right hepatic lobe consistent with perfusional anomalies” that were noted on an October 2017 MRI. See, perfusional anomalies increase the risk of biliary stenosis from a couple percent to 19% (according to HAI pump research articles). Dr. Kemeny did not like my questions but I think asking about where these wedge-shape hyperenhancing areas in the right hepatic lobe consistent with perfusional anomalies went and why haven't they been noted since are important questions. Unfortunately, she dismissed my questions (as commented on previously) so we are left in the dark. I spent some of today looking (again) at his MRI images. I saw what the radiologist was referring to in October 2017 and I can see the same area(s) (one more pronounced than the other) on the December 3, 2018 MGH MRI. On Tuesday, I will finally get his MSK MRI CD from January 11th and see what that shows. The wedge (triangular) shape that I am most concerned about was far more faint in the December 3, 2018 MRI than in the October 2017 MRI. This suggests to me that the area is early stage cirrhosis, fibrosis, which is reversible and the fainting of the area shows that he has been reversing it. There are three primary causes of wedge-shape hyperenhancing areas on MRIs: cirrhosis, liver cancer, and anatomical anomaly. Please wish us luck, we are going to need it!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0, 2.9, 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows met
Resection & HAI Mar 7

Punky44
Posts: 224
Joined: Mon Oct 01, 2018 4:29 pm

Re: Possibly still NED...our story to date

Postby Punky44 » Sun Mar 03, 2019 7:11 pm

Good luck to you this week and hope you get all the info you can to make your decision!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
Completed 8 rounds of neoadjuvant Folfox 11/5/18 - 2/11/19
Current CEA 6.2

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

Milk Tea
Posts: 16
Joined: Wed Feb 13, 2019 1:14 pm

Re: Possibly still NED...our story to date

Postby Milk Tea » Mon Mar 04, 2019 12:23 am

Sending you good vibes!! Wish your husband a very successful surgery. pump or no pump, either way, he will be doing great.
Wife to DH
09/2016: Dx at 50, CC Ascending colon, 10+ liver Mets
KRAS-Mut G12V, MSS, CEA 8
09/2016: Nearly blocked, Emergency colon surgery (LAR)
FOLFOXIRI+Avastin: 6 before and 6 after liver resection
01/2017: Liver resection, open, both lobes, 40% total liver cut, tumors either cut out or microwave ablation burn, all tumors are out
02/2017-01/2019 : Clean CT every 3-4 months, CEA between 2-3
06/2017-Present: Maintenance Chemo: Xeloda + Avastin

User avatar
LPL
Posts: 561
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Possibly still NED...our story to date

Postby LPL » Mon Mar 04, 2019 3:24 am

Good Luck !
Will be thinking of you both <3
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

mpbser
Posts: 751
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Tue Mar 05, 2019 2:27 pm

Thank you for the well wishes!

I got the CD of the MSK MRI today and, just my luck, the file is corrupted and I can't run the Dicom viewer. Ugh.

Also, hubby is still on the fence about the pump.... I don't know if he is going to go through with it. Too many unanswered questions, too many unknowns, too many risks.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0, 2.9, 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows met
Resection & HAI Mar 7

AmyG
Posts: 60
Joined: Tue Dec 25, 2018 8:08 pm

Re: Possibly still NED...our story to date

Postby AmyG » Tue Mar 05, 2019 3:02 pm

As for the pump, does it have to be now? Is MSK the only place you can have it done? If you decide not now but maybe later, will they work with you guys?

A ton of questions, I know!
42 dx @ 9wks pregnant w/baby #8 8/18
Originally thought to be stage 2, no lymphnodes involved 9/18
Spot on liver found prior to bowel resection 9/18
Liver biopsy, it's malignant 12/18
Stage IV, 1 liver met 4.7cm
2019 plan is to deliver baby early and start FOLFOX w/Avastin

mpbser
Posts: 751
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Tue Mar 05, 2019 3:49 pm

Great question. In fact, we just sent the following through the portal:

With the date of surgery quickly approaching (in two days), I was hoping I might take a moment to ask you a few questions to help me in reaching the decision as to whether the pump is indeed the right choice for me.

1. With my most recent scans only showing one met, that appears to be shrinking given the measurements, and no additional areas of concern (as I understand it), do you believe that the benefits of the pump outweigh the potential complications and risks? If so, could you briefly share why?

2. If I should choose not to receive the pump at this time, would it remain an option for future treatment if there is a recurrence?

3. Without the pump, what would you estimate the chance of recurrence to be versus with the pump?

4. If I decided to forego the pump due to the limited disease known at this time, but Dr. D'Angelica were to find additional disease while evaluating the liver during surgery, could the decision be made on the fly to place the pump? Or in the alternative, could the procedure be to place the pump, but abort if no additional disease was
found?

My concern is essentially overtreatment, as well as your concerns as to servicing the pump due to my
size. Plus, there is a serious concern regarding flow scan accuracy, thus increasing the risks. I know
from previous experience that I tend to drop about 20 pounds fairly quickly post-surgery, and I have
been going to the gym two to three times a week since the beginning of the year... I'm actually rather
enjoying it to be honest. I'm confident that a significant amount of weight will be lost in the coming months.

I thank you for your time and consideration in answering these questions. I eagerly await your
response so I can make a final determination as to the course I would like to pursue.

>>> Given the track record we've had thus far, I don't hold my breath to get any answer.... I really hate this woman.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0, 2.9, 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows met
Resection & HAI Mar 7

Punky44
Posts: 224
Joined: Mon Oct 01, 2018 4:29 pm

Re: Possibly still NED...our story to date

Postby Punky44 » Tue Mar 05, 2019 4:17 pm

Those are legit questions. I really hope you get answers.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
Completed 8 rounds of neoadjuvant Folfox 11/5/18 - 2/11/19
Current CEA 6.2

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

hopie
Posts: 64
Joined: Fri Jan 18, 2019 12:15 pm

Re: Possibly still NED...our story to date

Postby hopie » Tue Mar 05, 2019 4:33 pm

I hope you get your answers and are able to make an informed decision. Wishing you both good luck!
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

AmyG
Posts: 60
Joined: Tue Dec 25, 2018 8:08 pm

Re: Possibly still NED...our story to date

Postby AmyG » Tue Mar 05, 2019 4:38 pm

Great minds must think alike or something! :lol:

Honestly, those are the questions I would be asking if I was facing your husband's situation. Here's to hoping you get answers quickly!
42 dx @ 9wks pregnant w/baby #8 8/18
Originally thought to be stage 2, no lymphnodes involved 9/18
Spot on liver found prior to bowel resection 9/18
Liver biopsy, it's malignant 12/18
Stage IV, 1 liver met 4.7cm
2019 plan is to deliver baby early and start FOLFOX w/Avastin


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