Cleveland Clinic ?

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sdino
Posts: 71
Joined: Tue Mar 28, 2017 5:32 pm

Cleveland Clinic ?

Postby sdino » Fri Aug 16, 2019 1:22 pm

Quick Question - It appears our Oncologist at Roswell Park, Buffalo, NY is leaving. Im thinking about taking my Wife to Cleveland Clinic Main Campus and possibly trying to see Dr. Carol Burke. Anyone have any thoughts on Cleveland Clinic and Dr Burke ? Thanks,
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: Bilateral ranging 4mm-2.3CM
MSS, KRAS-G12D; TP53
Xeloda+Avastin 11/16 to 1/8/17
CT Scans: 5/17 colon & lung met shrinkage,11/17 to 7/19 slight progression
iTCR TIL Trial NCT03412877 4/19 to 5/19 Off trial, - Sept. 2019 doing Original TIL trial NCT01174121
CEA:16-11/16; 0.6-5/17; 5.1-9/18; 5.4-10/18; 26.9-7/19

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ginabeewell
Posts: 297
Joined: Wed Oct 24, 2018 10:30 am

Re: Cleveland Clinic ?

Postby ginabeewell » Fri Aug 16, 2019 1:47 pm

I did a consult at Cleveland Clinic.

I wasn't super impressed with the oncologist with whom I met (not Dr Carol Burke). He kind of affirmed what we had already heard, and was resistant to talk about the possibility of surgical intervention. He didn't mention the HAI pump at all, and when I asked him about their recent live liver transplant for a colon cancer patient, he kind of blew off my question there, too. I told him that I knew there was no cure without surgery and was hoping to discuss how / whether that could happen, and he told me that it was as if I was entering elementary school and wanted to talk college admissions.

(I know now that he was likely hesitant because nobody expected that chemo would get me to a point where I would actually be resectable. But then I wish he would have just said that rather than dodging the question.)

His recommendation for me was consistent with what I had already heard at Northwestern and University of Chicago from three other oncologists with whom I had spoken.

The only consult I had that led to a different conversation was the one I had at MSK about the HAI pump.

I don't know anything about the doctor you mentioned - is there something about her or her research that makes you think she would have a different take on your wife's situation?
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

sdino
Posts: 71
Joined: Tue Mar 28, 2017 5:32 pm

Re: Cleveland Clinic ?

Postby sdino » Fri Aug 16, 2019 2:43 pm

Thanks for the reply gina - We had the same experience at MSK, they agreed with Roswell Park,,, so nothing innovative from them. We live in Western, NY and Cleveland is about 2 hrs. I read Dr. Burke's reviews/bio's that's about it. I may look into UPMC, Pittsburgh, PA or Strong Memorial in Rochester, NY. These would be her home base for SOC. We are going for a 2nd chance in September at NIH/NCI in Bethesda, Md for the TIL trial. thanks,
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: Bilateral ranging 4mm-2.3CM
MSS, KRAS-G12D; TP53
Xeloda+Avastin 11/16 to 1/8/17
CT Scans: 5/17 colon & lung met shrinkage,11/17 to 7/19 slight progression
iTCR TIL Trial NCT03412877 4/19 to 5/19 Off trial, - Sept. 2019 doing Original TIL trial NCT01174121
CEA:16-11/16; 0.6-5/17; 5.1-9/18; 5.4-10/18; 26.9-7/19

Mohrfamily
Posts: 152
Joined: Tue May 22, 2018 4:04 pm

Re: Cleveland Clinic ?

Postby Mohrfamily » Wed Aug 21, 2019 4:51 am

My husband was diagnosed stage IV CRC with liver dominant metastasis in April 2018 by sheer dumb luck.

My husband had lost his job (company soent to much on renovations with no added income to support it... Last hired first fired. Had some pain (in his liver) anytime he had ice cream or cold milk and assumed a lactose issue. He went on my insurance and a biometric screening showed way more wrong, ultrasound and biopsy later... Cancer.

We were told to visit Cleveland Clinic as well. Our problem is that they are very "by the books" numbers, data, statistics etc. "Your best reaction to chemo is in the first 3 months you won't see much else happen after that" - Dr. Siegel (liver surgeon with CC). The problem is my husband didn't fit in their box. Did he have amazing response that first 3 months? No, but he had positive results. He had continued albeit slow but positive responses all the way to the present. And his "innumerable" tumors have shrunk by nearly half! But at 1 week before Christmas last year they decided to put my husband on a shelf with chemo till he couldn't do it anymore. Unacceptable.

I found more and better help HERE than I ever did in Cleveland. And now Toledo hospital is willing to do more with us than Cleveland ever anticipated. I have had more hope away from Cleveland.

Best of luck
DH dx officially stage IV with liver mets largest measuring 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long 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.
4/3/19 consult radiologist for possible radiation treatment.

Rock_Robster
Posts: 290
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Cleveland Clinic ?

Postby Rock_Robster » Wed Aug 21, 2019 5:01 am

I’m not even in the US but I’m just synthesising what I’ve observed from others... it seems there’s “good hospitals” and then there’s “good hospitals for colorectal cancer”. As far as general hospitals go, Cleveland, Mayo and Mass Gen are some of the top-rated hospitals in the world, but many CRC patients seem to report better care from places like Northwestern, Spectrum and Johns Hopkins. For cancer hospitals, MD Anderson regularly tops the charts, but many CRC folk prefer MSK and City of Hope (realising this could be HAI-related).

I was pretty disappointed in my second opinion from Mass Gen and even Dana-Farber, whereas MSK were fantastic.

Anyway, just an observation from the other side of the world...
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1apM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN+
08/19 - Missed liver spot
08/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 2
10/19 - Planned liver resection #2 & ileo reversal

sdino
Posts: 71
Joined: Tue Mar 28, 2017 5:32 pm

Re: Cleveland Clinic ?

Postby sdino » Thu Aug 22, 2019 10:53 am

Thanks for the input Mohr and RockR. Yes I can see Cleveland Clinic going by a scripted playbook, that is what Roswell Park does. I DO NOT want a Treatment Facility like that anymore,. Looking for a little bit more out-of-the-box thinking. We shall see what happens with this 2nd go around of TIL infusion at NIH in the next few months.
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: Bilateral ranging 4mm-2.3CM
MSS, KRAS-G12D; TP53
Xeloda+Avastin 11/16 to 1/8/17
CT Scans: 5/17 colon & lung met shrinkage,11/17 to 7/19 slight progression
iTCR TIL Trial NCT03412877 4/19 to 5/19 Off trial, - Sept. 2019 doing Original TIL trial NCT01174121
CEA:16-11/16; 0.6-5/17; 5.1-9/18; 5.4-10/18; 26.9-7/19

Rikimaroo
Posts: 246
Joined: Tue Dec 20, 2016 8:48 pm

Re: Cleveland Clinic ?

Postby Rikimaroo » Fri Aug 23, 2019 3:58 pm

I go to Cleveland Clinic in Weston and from what I have read they are a TOP hospital for CRC (Colorectal Cancer, Surgery and Treatment). There staff is so nice and patient and friendly. The doctor's take there time with you and do not rush you out. The Radiation Oncologist Marc Apple who use to work there still helps me on the side at no charge and reviews my images, medical information to give a second opinion versus the doctors at CC. I do agree they are very by the book, almost tunnel vision style. They are afraid of lawsuits, this is why most Major Hospital are focused on Standard of Care and what typically is golden.

They have done a pretty good job with me. Currently my CEA is 1.5 from 1.2 and they want to operate on my pelvic recurrence which from the MRI/Pet report its mostly fibrosis signal, which means its might not even be cancerous given my CEA, scans, blood work etc....Cleveland still thinks surgery with IORT is the way to go and that is a big open surgery with alot of associated risks, that preferably watch and wait approach might be better right now given my current results.

I think they are very pro surgery by the book and don't think outside the box, but I don't know if everywhere else is like this. They are still a great hospital but its always best to get 2nd or 3rd opinions.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

Maelleous
Posts: 118
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Cleveland Clinic ?

Postby Maelleous » Mon Aug 26, 2019 9:03 am

I also went to Cleveland Clinic in Weston Florida and nothing but great things to say about them. I don't know about further north, but in Florida they are your best bet.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!
Still NED

Rikimaroo
Posts: 246
Joined: Tue Dec 20, 2016 8:48 pm

Re: Cleveland Clinic ?

Postby Rikimaroo » Mon Aug 26, 2019 10:47 am

Maelleous,

Who was your doctor and oncologist. My surgeon is Dr. Wexner and oncologist Dr. Nagarajan. How is life post reversal?
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22


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