Dr Kemeny and HAI pump...APPROVED

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Cfbiff
Posts: 50
Joined: Mon Jan 18, 2016 12:04 am

Dr Kemeny and HAI pump...APPROVED

Postby Cfbiff » Tue Jun 07, 2016 5:16 am

As of yesterday, we are approved for the pump by Dr. Kemeny and Dr. D'Angelica. So relieved.
Can't say enough about Dr. Kemeny. The beautiful thing is Dr. Kemeny is now our Dr. She has advocated for us more in three 5 minute meetings than any of our local Drs have done in a year. Our local Dr's have written me off as dead from the beginning (July of 2015) she is giving us hope and fighting for us already.

The only downside....aside from the risks of surgery....is that she said because we've had systemic treatment for so long we may only see 30 to 50% of the normal results. We'll pray for better. God has sustained my body to react and handle the chemo so far, we pray that will continue. Wish I had known about her earlier. The kicker is when we told the local onc that we were going to see her.....wait for it.......they said they knew about her and the pump....but she scared them. Why didn't they tell us?...frustrating. But we're moving on and now have her as dr....and with her comes a hope we haven't had since our dx.
7/15 dx colon cancer stage 4, mets to liver age 46
Cea 1700
8/15 folfox
1/16 cea 47
2/7 began consults with Dr Kemeny about liver pump.
2/16 FOLFIRI /started
3/7 laparoscopy showed no cancer in abdomen
3/2016 began folfirinox and asked again about hai pump
5/16 CEA 186
6/16. colon resection and HAI pump, 15/33 lymph nodes, margins clear
7/16 FUDR began. CEA 300+
8/16 FUDR 2nd treatment and FOLFIRI systemic restart. CEA 400+
9/6 added mitomycin to pump.
10/5 CEA coming down

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Dr Kemeny and HAI pump...APPROVED

Postby midlifemom » Tue Jun 07, 2016 6:29 am

Congrats on becoming one of "Kemeneys Kids".
I hope you get the response you're looking for.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Dr Kemeny and HAI pump...APPROVED

Postby HopeForJesse » Tue Jun 07, 2016 6:55 am

welcome to the K club! So happy to hear she can help you!!! Amen!
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

Kathy
Posts: 114
Joined: Sat Mar 14, 2009 8:28 pm
Location: New Jersey

Re: Dr Kemeny and HAI pump...APPROVED

Postby Kathy » Tue Jun 07, 2016 8:18 am

First of all, congratulations! Dr. Kemeny seems to scare a lot of other doctors. One of my friends oncologist asked me who was my doctor and I told her Dr. Kemeny and his response was "She's scary." I am here 7 1/2 years later because of her and Dr. D'Angelica and will be at my son's wedding in October thanks to them. She will fight tooth and nail for you. And my advise to you is remember "a one minute visit is a good visit." It generally means things are going according to plan. We are all here for you.

Kathy
Stage 1- resection 9/ 05
Recurrence-2/ 2008 chemo/radiation 5 FU/oxi
APR surgery 7/ 2008- Found spread to liver-Margins not clean
chemo between surgeries
Liver resection and HAI pump-11/ 08 Chemo 6 months
NED 11/08

NED since 11/2008

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Dr Kemeny and HAI pump...APPROVED

Postby juliej » Tue Jun 07, 2016 3:38 pm

Cfbiff wrote:As of yesterday, we are approved for the pump by Dr. Kemeny and Dr. D'Angelica. So relieved.

First of all, congratulations on becoming one of Dr. K's patients! Welcome to the pump club! :D

Cfbiff wrote:The only downside....aside from the risks of surgery....is that she said because we've had systemic treatment for so long we may only see 30 to 50% of the normal results. We'll pray for better.

Second, I had chemo for over a year before I got the pump and I had excellent results so keep the faith! :D

Cfbiff wrote:Can't say enough about Dr. Kemeny...She has advocated for us more in three 5 minute meetings than any of our local Drs have done in a year. Our local Dr's have written me off as dead from the beginning (July of 2015) she is giving us hope and fighting for us already.

Third, I know the feeling! She is the reason I'm still alive and doing well today. My local docs had given up entirely. The woman is brilliant, truly brilliant!
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

pantufla
Posts: 148
Joined: Thu Dec 03, 2015 12:44 pm
Facebook Username: kelleykulina

Re: Dr Kemeny and HAI pump...APPROVED

Postby pantufla » Tue Jun 07, 2016 6:09 pm

I am just curious. Has Dr. Kemeny trained other doctors around the country? Do other surgeons do this tx?
DH T2 N1b M0. 3/15 positive nodes.
Stage IIIA moderately differentiated adenocarcinoma.
Tumor size 6 cm.
Left hemicolectomy 10/26/15.
FOLFOX 11/30/15 to 5/2/16, full 12 cycles.
10/3/16 CT scan clear.
11/10/17 CT: "Focal opacity along the left lower lung, 7 mm. Two small peripheral opacities along the right lower lobe, 2 to 3 mm. A few small to mildly prominent left-sided central mesenteric nodes, up to 13 mm.
June 2019: NED.
2020: NED 5 years. 4 mm lung nodule on CT

kandj
Posts: 314
Joined: Sun Sep 27, 2015 11:29 am

Re: Dr Kemeny and HAI pump...APPROVED

Postby kandj » Tue Jun 07, 2016 6:29 pm

pantufla wrote:I am just curious. Has Dr. Kemeny trained other doctors around the country? Do other surgeons do this tx?


Dr. Kemeny has had numerous fellows, and there are many doctors that do the same treatment. That said, it is said she has the midas touch when it comes to the pump and dosing. When we were just starting out, we were told there was a doctor at Baylor that did the HAI pump surgery. We tossed the idea around (MDA does it as a clinical trial, not as a standard treatment protocol) since it was so much closer to us. In the end, we decided if DH was going to get it done, we wanted it by someone who had the literature to back it up. And that is Dr. K. Not only that, but we wanted a surgeon that has done this hundreds of times, not one every once in a while. And thank god we did! Dr. D ran into issues getting the catheter into DH's vein and the surgery took twice as long. I firmly believe that had we been at a less familiar location, with less experienced doctors, the surgery would have been abandoned there.
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

pantufla
Posts: 148
Joined: Thu Dec 03, 2015 12:44 pm
Facebook Username: kelleykulina

Re: Dr Kemeny and HAI pump...APPROVED

Postby pantufla » Tue Jun 07, 2016 6:38 pm

WOW!!! Thanks kandj. That is amazing. Good to know. :)
DH T2 N1b M0. 3/15 positive nodes.
Stage IIIA moderately differentiated adenocarcinoma.
Tumor size 6 cm.
Left hemicolectomy 10/26/15.
FOLFOX 11/30/15 to 5/2/16, full 12 cycles.
10/3/16 CT scan clear.
11/10/17 CT: "Focal opacity along the left lower lung, 7 mm. Two small peripheral opacities along the right lower lobe, 2 to 3 mm. A few small to mildly prominent left-sided central mesenteric nodes, up to 13 mm.
June 2019: NED.
2020: NED 5 years. 4 mm lung nodule on CT

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: Dr Kemeny and HAI pump...APPROVED

Postby Badass » Wed Jun 08, 2016 7:31 pm

Great for you that you are working with Dr. Kemeny. I think it was Julie J. that said that she let's them do the worrying for her. I found that to be so true-- I put myself in her hands, knowing I have a doctor whose judgement I can trust. I wish you the best with your treatment!

Jane
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

Nik Colon

Re: Dr Kemeny and HAI pump...APPROVED

Postby Nik Colon » Wed Jun 08, 2016 8:40 pm

Great news!
She scared them?! Lol

TracieLynn
Posts: 46
Joined: Thu Mar 19, 2015 2:00 pm

Re: Dr Kemeny and HAI pump...APPROVED

Postby TracieLynn » Thu Jun 16, 2016 10:13 pm

I have a silly question. Maybe a ridiculous and scary question, from someone with liver and lung mets who has had two resections and watching two more lung spots. I have had read about the HAI pump and Dr K but never considered myself a candidate as I was told I was operable and had liver resected. Do you go to Dr K because no one else will touch your tumor? i know she is known as a a life saver and is tremendously respected for her trailblazing... Reassessing my options after next scan and while HAI is not on my radar, I'm reflecting on what I know now and didn't know then....thx!
43 yr old Wife to DH Stage IIIB w/one Tumor Deposit
1/17 lymph nodes
Low RC Dx 2.26.15 CEA 19.5
Xeloda and Radiation 3.24-5.1
May 2015 break for recover CEA 5.5
LAR June 2015 w/temp ileostomy CEA 3.3
Xelox Aug 2015 and switch To Northwestern
09/2015 blackout, blood clot, seven stitches, on blood thinners
CT scheduled for 12/8/15
Feb 2016 Met to liver. CEA at 3.1
Liver resection @NW 3/23/16
VATS for Lung 5/6/16
More spots popping up lungs
Folfiri+Avastin Started Sept 2016-current (April 2017)

Cfbiff
Posts: 50
Joined: Mon Jan 18, 2016 12:04 am

Re: Dr Kemeny and HAI pump...APPROVED

Postby Cfbiff » Thu Jun 23, 2016 12:22 pm

We are going because we have been given no hope by our local onc. Liver inoperable and they wouldn't consider taking out the primary. I found dr. Kemeny on a YouTube where they showed a scan that looked like mine (bad) and then showed the result after and they were able to get to resection.
The Local dr.s have told me we won't get to resection.....and that may be true, but Kemeny and Dr. d'Angelica have said we are candidates for the treatment and resection is possible dependent on response. Over and over we've heard they are miracle workers....so are thrilled to be under their care. We have hope now.
Surgery tomorrow....nervous but ready!
7/15 dx colon cancer stage 4, mets to liver age 46
Cea 1700
8/15 folfox
1/16 cea 47
2/7 began consults with Dr Kemeny about liver pump.
2/16 FOLFIRI /started
3/7 laparoscopy showed no cancer in abdomen
3/2016 began folfirinox and asked again about hai pump
5/16 CEA 186
6/16. colon resection and HAI pump, 15/33 lymph nodes, margins clear
7/16 FUDR began. CEA 300+
8/16 FUDR 2nd treatment and FOLFIRI systemic restart. CEA 400+
9/6 added mitomycin to pump.
10/5 CEA coming down

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Dr Kemeny and HAI pump...APPROVED

Postby juliej » Thu Jun 23, 2016 3:02 pm

TracieLynn wrote:I have a silly question. Maybe a ridiculous and scary question, from someone with liver and lung mets who has had two resections and watching two more lung spots. I have had read about the HAI pump and Dr K but never considered myself a candidate as I was told I was operable and had liver resected. Do you go to Dr K because no one else will touch your tumor? i know she is known as a a life saver and is tremendously respected for her trailblazing... Reassessing my options after next scan and while HAI is not on my radar, I'm reflecting on what I know now and didn't know then....thx!

TracieLynn, I am another one of Dr. K's patients. I originally went to her because my local cancer center said I was inoperable due to a combination of liver and lung mets. She took my case to her team and 6 weeks later I was in surgery. Surgery #1 was removal of primary tumor, liver resection, and HAI pump implanted. Three months later I had surgery #2 - double lung surgery plus an ileostomy reversal. My liver has been clear since I finished HAI treatment! :D You should keep open the possibility of a consultation with Dr. K should you need it.

Cfbiff wrote:Surgery tomorrow....nervous but ready!

Sending prayers and good thoughts your way for a successful surgery tomorrow!
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

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Dr Kemeny and HAI pump...APPROVED

Postby Pita » Thu Jun 23, 2016 3:12 pm

Good luck with your surgery!!!
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

Cfbiff
Posts: 50
Joined: Mon Jan 18, 2016 12:04 am

Re: Dr Kemeny and HAI pump...APPROVED

Postby Cfbiff » Sat Jun 25, 2016 2:11 pm

thank you all for your well wishes and prayers. the surgery was yesterday and near flawless from the surgeons persepective. they were even able to reconnect the sigmoid instead of an ostomy...which they had planned to do.
Im a hurtin unit today but have made day two goals less than 24 hrs out of surgery. onward and upward. so happy to have the primary cancer out and dr. kemeny for our doc! finally some hope.
7/15 dx colon cancer stage 4, mets to liver age 46
Cea 1700
8/15 folfox
1/16 cea 47
2/7 began consults with Dr Kemeny about liver pump.
2/16 FOLFIRI /started
3/7 laparoscopy showed no cancer in abdomen
3/2016 began folfirinox and asked again about hai pump
5/16 CEA 186
6/16. colon resection and HAI pump, 15/33 lymph nodes, margins clear
7/16 FUDR began. CEA 300+
8/16 FUDR 2nd treatment and FOLFIRI systemic restart. CEA 400+
9/6 added mitomycin to pump.
10/5 CEA coming down


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