Possibly still NED...our story to date

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mpbser
Posts: 936
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Tue Feb 26, 2019 5:57 pm

I've been reflecting on yesterday's meeting with Dr. K and the reactions I have received on one of the colontown facebook groups to my post reiterating what I wrote above. I am utterly confused. I have heard so many contradicting things that my head spins. I have been told that she appreciates an informed patient who asks many questions. But now that I have given my account of the events that transpired yesterday, her followers rush to her defense, basically saying that we knew what we signed up for and that includes being expected to unquestioningly following orders. One even went so far as to say "...for everyone's sake, step aside and give someone else a chance to be treated by her. You now know first-hand, and without any doubt, that she doesn't like 'all these questions'. So your decision is between having an onc who will allow all your questions, or getting this specific treatment from someone who won't." Wow. Just wow.
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: 936
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Tue Feb 26, 2019 6:00 pm

And seriously, after being told by a number of people that she DOES appreciate questions -- she sure has had hour and even hour and half long time for particular patients and their questions -- now, a week before surgery and this rather irritating experience with Dr. K, to say the least, someone has the gall to say this shit?

Jesus christ.
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

radnyc
Posts: 414
Joined: Tue Apr 06, 2010 6:32 pm

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

Postby radnyc » Tue Feb 26, 2019 6:30 pm

I feel the need to say something about MSK and Dr. Kemeny. First off she's not the ONLY oncologist there, they have several, well known, and experienced doctors. In fact and I just looked it up, they have 46 Gastroenterologist and Medical Oncologists dealing with colon cancer patients, that's a lot. If you're given the hepatic pump as part of your treatment, you're AUTOMATICALLY on her team, no matter who your oncologist is. It's her show, her long-running clinical trial, they ALL defer to her. I had no idea who this woman was, in fact I've never even seen her. When I went for treatment there, I was trying to see Dr. Saltz, who by the way is the head of the department, not Kemeny. He was booked forever, so I got recommended someone else. Kemeny's name was not mentioned at all until some of my liver numbers went up and they consulted with her right away, this happened a couple of times. All their doctors treating patients with the HAI pump go to her with ANY questions. I had no doubt I was getting the same treatment as if I had her as my primary oncologist. I think some people on here have gotten caught up in the Kemeny mystique or something like that. Complaints about her attitude are common, the doctor I see was and is not the warmest person I know. It took a few months before I realize that's ok. What they're doing over there has kept me cancer free for almost 8.5 years. Oncology, I think, has to be the hardest medical specialty to practice, imagine going to work everyday knowing that over 50% of your patients WILL DIE. Kemeny and the others at MSK see thousands of people, who knows how many. But she sometimes has 20+ appointments in a day. That means she literally cannot spend more than 15 minutes average with each. She has to triage, the hardest cases I'm sure get more time. We each have to make our own calls in our treatment, I want a doctor who is experienced, up-to-date on the latest treatments and HONEST enough to tell me that my time is up. I do not want a drinking buddy or a facebook friend, I want a professional.
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

User avatar
Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

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

Postby Maggie Nell » Tue Feb 26, 2019 11:33 pm

..... Dr. Kemeny is not known for her bedside manner, but she knows what she is doing.......


...Kemeny is tough. She's a scientist in a doctor's coat. But she fights like a tigress for her patients, and like mom_2_3, I'm very
grateful that she's on my side. And her ability as a scientist means that she can switch gears in a heartbeat if you need a regimen
tweaked so that you can get better results. I started with nine large tumors in my liver spread throughout the lobes.
Two years after diagnosis in 2004, Dr. K's treatments along with my local onc's treatments got me to liver resection.
I'd likely not have gotten there without her efforts......Gaelen


Quotes found archived thread
HAI-pump at Sloan-Kettering with Dr Kemeny Thu Oct 25, 2007
viewtopic.php?f=1&t=2140&p=13431&hilit=dr+Kemeny#p13431
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

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

Postby hopie » Wed Feb 27, 2019 5:25 am

mpbser wrote: One even went so far as to say "...for everyone's sake, step aside and give someone else a chance to be treated by her. You now know first-hand, and without any doubt, that she doesn't like 'all these questions'.


Before I start venting out: I'm really glad that your husband's scans showed no progression!

This is driving me mad. She's not doing you a favor; she's doing her job--for which she's getting all sorts of compensation. I hate it when doctors act so entitled. I hate it even more when people argue on their behalf. She's doing amazing things, no doubt. And I don't know the specifics of your encounter with her, but suffering from lack of meaningful interaction with my mom's oncologist, I just want to scream: the fact that you're trying to treat a patient DOES NOT JUSTIFY NOT DOING OTHER PARTS OF YOUR JOB.

That said, I would probably take my mom to Dr. K. if we were in the US. Most doctors have that attitude and I fear it only gets worse with considerable clinical success. Ideally, it shouldn't be about what the doctor prefers ("appreciates questions" or "doesn't like them") but the patient. Either way, I would try to get answers from someone else on her team if they were crucial to the course of treatment. Wishing you lots of luck and patience! Hope everything works out eventually!
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.

mpbser
Posts: 936
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Wed Feb 27, 2019 7:34 am

Thanks, hopie.

I had certainly done my homework and knew not to expect her to be warm and fuzzy. I knew she doesn't waste any time and that includes small talk. When she walked in, we had barely exchanged hellos and she launched into a tirade about the many questions I submitted to her office through the portal. I had delivered them in two sets: one that included questions that could be answered by either D'Angelica or her and then another that was only for her. I was taken aback by her attitude because a number of her patients have said she affirmatively appreciates an inquiring patient who seeks to be well informed and educated. Well, this was not at all the case with us on Monday. She not only was not happy with the questions, she was demonstrably angry and crossed a line.
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: 936
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Wed Feb 27, 2019 8:15 am

Just read this quote in Life Extension (magazine):

Nothing in science has any value to society if it is not communicated.

How appropo.
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

rp1954
Posts: 1523
Joined: Mon Jun 13, 2011 1:13 am

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

Postby rp1954 » Wed Feb 27, 2019 10:16 am

mpbser wrote:...some super powerful supplements to his regime a few weeks ago. Very glad they work but now their efficacy is impeding on what were firm plans to get the pump.

Almost as importantly (to my husband), Dr. Kemeny showed her true colors to us last night. She was extraordinarily abrasive. I am a very clinical thinker and put my feelings aside when it comes to these matters,

You're simply outside Dr K's expectations on her time involved, clinical assumptions and her clinical requirements. You all are trying to control the situation, locking horns. Dr K notoriously insists on the last word in calling the shots.

In the great distance here, I get the impression Dr K is like most of her generation of drs on supplements, the normal garbled background and probably considers almost any substantial claim about them largely superstitious nonsense. (There is a lot of garble, pro, con and anti) In any case, from her perspective, she doesn't want someone jumping up and down on her high wire with unknowns that she's been working on for 30-40 years to gain control, to dynamically poison the liver at its Maximum Tolerated Dose of FUDR, finely monitored in real time. Most oncologists don't seem to master the detailed knowledge and work involved for "simple" FUDR with HAI at MTD, no excuses allowed.

Do I think some supplements could improve things on HAI toxicities and met kill? Sure, but who is going to do so much homework? Most people simply can't. I have not seen any indication that anyone at MSK has tried to master supplements at that level of performance or experimentation, either. Gathering detailed information is a problem. People usually don't collaborate that well either, even small (important) things are like pulling teeth e.g. whither CA199, AFP, LDH etc. after two years.

Your chemical choices in my opinion:
1. HAI
2. standard chemos +- supplements with a 2nd/3rd doctor
3. immunochemo with 1-2 doctors (who?)
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 to almost nothing mid 2018, mostly IV C

FightCRC
Posts: 40
Joined: Fri May 25, 2018 10:39 pm

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

Postby FightCRC » Wed Feb 27, 2019 1:21 pm

mpbser wrote:And seriously, after being told by a number of people that she DOES appreciate questions -- she sure has had hour and even hour and half long time for particular patients and their questions -- now, a week before surgery and this rather irritating experience with Dr. K, to say the least, someone has the gall to say this shit?

Jesus christ.


Yes, that was me. I meant no offense. And, in fairness, I did write quite a bit more. I'm sorry you've decided to latch onto just that part. Also, not sure where you heard that she appreciates a lot of questions...she quite famously does not. That's well-established.

Of course, we'd love all our doctors to not only be supremely skilled, but also to make us feel calm and reassured when we ask questions. That's not her. Again, well-established. Your experience as her patient then, depends on how you prioritize skill vs. bedside manner in your doctors.

You write "Dr. Kemeny showed her true colors to us last night. She was extraordinarily abrasive, confrontational, and argumentative. My husband now firmly despises her." So then the question becomes, why would you continue seeing a doctor you despise? If you're that put off, then yes...perhaps best to step aside and let someone else have a chance. I believe that's a legitimate point. She is who she is, and being mad about it isn't going to change anything. So, are you willing to tolerate her style in order to be her patient? Only you can answer that.

I was one who encouraged you to consult with Dr. Kemeny on this board when you were looking for help for your husband. Sorry to have suggested that, both for you/your husband and for Dr. Kemeny. It's not a good fit. In all sincerity, I do hope the best for your husband's treatment whatever you decide to do.

mpbser
Posts: 936
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Wed Feb 27, 2019 1:48 pm

Look, I don't give a shit about anyone's "style" or personality. What I do care about is the quality of the care that my husband gets. So, that includes a doctor's attention and it includes providing answers to questions and giving information so that the patient can make informed consent. I have described our first appointment with her as being an incredible waste of time with her 90 seconds meeting with us to gloat about how successful she is. She also said that my husband was an excellent candidate for the pump. We got very little out of that December 26th day at MSK. She said nothing about complications based on my husband's habitus, nothing about him needing to lose weight. We asked about meeting with her on January 25th when we had the consult with Dr. D'Angelica, as we had so little information from or interaction with her, but we were blown off. It was at that time that I figured submitting a list of questions through the portal would help the dearth of information situation as I was told that some questions can be dealt with by her team. Well, all we got back was a terse "Dr. Kemeny's policy is to answer all questions at your consultation" with the exception of the promise that she would test my husband's CA 19-9 on February 25th as I had made this request (CEA is not a good biomarker for him and CA 19-9 can be an alternative but a baseline is required pre-surgery). OK, well, then we get to the appointment and are scolded for asking questions. One week before his surgery. It has been since December 3rd since a new met has been discovered. We don't have time for this bullshit. Turns out that the CA 19-9 lab did not get done. Turns out that there was a serious need for him to lose weight and there are increased risks due to it. She alluded to them on Monday, but I had deduce the specifics. Seriously? A week before surgery she finally says something? Anyway, why stick with a doctor that we dislike? Because we had been committed to HAI pump chemo and she is the foremost expert in this niche. It's that simple. We don't need her cult followers to tell us to blindly follow the cult leader. Thanks for your input, but I'm good now.... don't need any more of your advice.
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

FightCRC
Posts: 40
Joined: Fri May 25, 2018 10:39 pm

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

Postby FightCRC » Wed Feb 27, 2019 2:17 pm

I agree that communication could be better. There's a lot that could be better. We are in a much more desperate situation than yours, though, so we'll forgive more. We also feel we have no choice. It appears you do (in that you don't absolutely need HAI). In any case, you are a bulldog and I do admire that. Again, I wish your husband all the best in his treatment.

mpbser
Posts: 936
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Wed Feb 27, 2019 3:33 pm

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.
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

AmyG
Posts: 304
Joined: Tue Dec 25, 2018 8:08 pm

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

Postby AmyG » Wed Feb 27, 2019 3:34 pm

What's your next move? Different oncologist? Not doing the pump?
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!

mpbser
Posts: 936
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Wed Feb 27, 2019 3:38 pm

We have until the day before surgery to decide whether he'll get the pump or not. Right now, it's still the plan. Either way, he gets resected. That met has been there to long - at least three months - to divert too far from current path.
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

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

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

Postby hiker » Wed Feb 27, 2019 6:05 pm

This thread has gotten completely out of control. Dr. Kemeny is an expert (probably the best in the country) for colon cancer that has metastasized to the liver. She's spent her entire life working to improve survival for stage IV patients. She's respected by her colleagues, her students and her patients. Now she's being trashed in this thread for being abrasive? Basically accused of taking advantage of people who are "in a weak and desperate situation"? The people who think highly of her are referred to as her "cult followers"?

mpbser, your relationship with her is going to be a long one if you choose HAI with her. You'll be seeing a lot of each other. If I despised a person, I certainly wouldn't want to spend the next 5 years seeing them quite frequently. And that goes both ways. If she knew how you felt about her, she could easily brush you off and move on to the next patient. She sees anywhere between 50- 60 patients every day she's in the office. No one ever gets more than a few minutes with her.

I joined this forum to help people...people who had the rug pulled out from under them like I did when I heard the words "you have cancer." You came on here looking for help, now you call the very people who have voluntarily come on here and given you the best advice they know as "cult followers."

I wish you well, but please don't inquire of me further.

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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