Dang 1cm Liver Met!

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SGNYC
Posts: 14
Joined: Mon Sep 03, 2018 9:20 pm

Re: Dang 1cm Liver Met!

Postby SGNYC » Mon Sep 03, 2018 9:32 pm

[/quote]
This is most likely the same clinical trial that I finished on 02/28/18 (as I believe Dr. Kemeny only has one trial currently for people with resectable mets). If you have any questions related to it, you could PM me as I'm happy to be of assistance.

hiker[/quote]

Hi,

First time poster here, so apologies if my quoted text doesn't work out!

My husband (42 yrs) recently diagnosed with what msk is calling Stage 3 1/2. Single 1cm liver met and small (1cm) spot on lung scan but could go either way. He just completed 4 rounds of Folfox and scans this week. I expect on Friday we'll get a sense of surgery timing as they thought 4-6 rounds of neoadjuvant.

I'm very interested in the HAI pump, given the success as well as the fact that we're already at MSK and wanted some input on whether anyone knows of they would do this during same surgery as colon and liver resection (the initial thought was both resects at same time). Also, is our oncologist likely to bring this up or should we request Dr Kemeny's trial/Dr. Kingham's trial etc.

Hiker - you especially seem to have a similar treatment track so any advice appreciated.

Thank you all and good thoughts to everyone.

hiker
Posts: 75
Joined: Thu Aug 09, 2018 10:15 am

Re: Dang 1cm Liver Met!

Postby hiker » Tue Sep 04, 2018 7:25 am

Hey SGNYC,

I will be happy to answer any questions you have regarding the HAI pump and Dr. Kemeny's trial. Please PM me so we can communicate directly.

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-present
Clear of cancer since surgery

Allen
Posts: 9
Joined: Fri Jun 01, 2018 2:29 pm
Facebook Username: Allen

Re: Dang 1cm Liver Met!

Postby Allen » Tue Sep 04, 2018 2:55 pm

You have my deep sympathies. Hang in there and remain hopeful. I had a 1 cm liver met, which was diagnosed immediately after colon cx diagnosis. After 6 FOLFOX treatments, the liver met was completely obliterated! The surgeon could not find it at surgery (open procedure) so he removed the entire lobe where it had been. Even the pathologist could find no evidence of the tumor. I don't know about the implantable pump, I had the standard 48 hr pump regimine. I'm hopeful that you'll have the same sort of outcome!

I've since completed 6 more FOLFOX treatments and I'll soon be entering the watchful waiting / scanning / periodic anxiety phase. Best of luck to you.

SGNYC
Posts: 14
Joined: Mon Sep 03, 2018 9:20 pm

Re: Dang 1cm Liver Met!

Postby SGNYC » Tue Sep 04, 2018 7:11 pm

Thank you Hiker and Allen.

Hiker - as I'm a new member, I think you may have to PM me b/c I don't yet have that feature enabled.

teacher2017
Posts: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Dang 1cm Liver Met!

Postby teacher2017 » Wed Sep 05, 2018 5:06 am

Allen wrote:You have my deep sympathies. Hang in there and remain hopeful. I had a 1 cm liver met, which was diagnosed immediately after colon cx diagnosis. After 6 FOLFOX treatments, the liver met was completely obliterated! The surgeon could not find it at surgery (open procedure) so he removed the entire lobe where it had been. Even the pathologist could find no evidence of the tumor. I don't know about the implantable pump, I had the standard 48 hr pump regimine. I'm hopeful that you'll have the same sort of outcome!

I've since completed 6 more FOLFOX treatments and I'll soon be entering the watchful waiting / scanning / periodic anxiety phase. Best of luck to you.



Thank you! I hope this is a bad memory very quickly. I don’t understand why it’s there- I just had chemo finish in April and my blood work, liver enzymes and cea have been normal all year. I need this out.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

Re: Dang 1cm Liver Met!

Postby heiders33 » Wed Sep 05, 2018 7:04 am

I had the same situation teacher - don’t know how it got there! I’m having surgery the day after you at MSK. Best of luck with your recovery!
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

SGNYC
Posts: 14
Joined: Mon Sep 03, 2018 9:20 pm

Re: Dang 1cm Liver Met!

Postby SGNYC » Thu Sep 06, 2018 1:04 pm

Hi Hiker,

Thanks for the PM - I've contacted the site administrator as I'm not yet able to send or reply!

Broadly, do you have a sense as to whether the colorectal oncology team at MSK advocates for HAI?

Also, I know they will implant HAI while doing a liver resect but wondered if you have any info if it can be done in combination with not only liver resect but also colon resect (we were told those two could be done at same time)?

Thank you and good thoughts always to everyone here

hiker
Posts: 75
Joined: Thu Aug 09, 2018 10:15 am

Re: Dang 1cm Liver Met!

Postby hiker » Thu Sep 06, 2018 2:00 pm

Hey SGNYC,

No problem on the PM issue - I just don't want to hijack teacher's topic any more than I have. Hopefully the board will get you able to PM soon.

It's my understanding that MSK implants more HAI pumps than any other facility in the world. They have been using them quite successfully for decades. There are many colorectal oncologists at MSK - mine is Dr. Nancy Kemeny who is well known for her expertise with the pumps. It was either during my first or second meeting with her that I told her I wanted to go after the cancer with the most aggressive treatment plan available. She didn't even hesitate for a second - she said that they would be implanting an HAI pump in me and brought in one of her assistants with an actual pump to explain the whole thing to me. She's to the point and brilliant.

I see no reason why the HAI pump couldn't be implanted during the colon and liver resection surgery. May as well do it all while they're in there poking around. I wish I would have had it done that way, but I had my colon resection at a different hospital before I had spoken with MSK.

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-present
Clear of cancer since surgery

teacher2017
Posts: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Dang 1cm Liver Met!

Postby teacher2017 » Sat Sep 08, 2018 6:59 am

Hi all-
FINALLY spoke to Dr. Z at MSK. She said that the pump was an extreme thing and would need to be checked/filled by her every two weeks. A commitment. She said that she thought it wasn’t necessary at this time and it could always be revisited. She asked if the surgeon pushed it. I said he did not and he didn’t give me any pushback after I told him that I’d like to do this laproscopically. I am very pleased that I spoke to her. She also said that after the procedure she will look at the pathology report and decide if chemo is need or not. I think this was the right move for me. She was very supportive of the decision not to do this to my body at this time. So sept. 12 this little devil is being evicted. May I please see NED!!!!!!
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

User avatar
Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Re: Dang 1cm Liver Met!

Postby Atoq » Sun Sep 09, 2018 1:29 am

That was good news! Good luck with the surgery and your nearby NED status.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

teacher2017
Posts: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Dang 1cm Liver Met!

Postby teacher2017 » Mon Sep 10, 2018 6:40 am

When will I know if I’m NED? From a cat scan after surgery? Will someone actually say those words? I think I’d burst into tears if I heard it. Thank you all for your help here. I will keep you posted.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

margiej
Posts: 52
Joined: Sat Apr 14, 2018 8:46 am

Re: Dang 1cm Liver Met!

Postby margiej » Mon Sep 10, 2018 8:29 am

Wishing you all the best with your surgery this week!
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
CT 10/3/17 clear
CT 10/17/18 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

Cmac1275
Posts: 38
Joined: Mon Aug 06, 2018 4:21 pm

Re: Dang 1cm Liver Met!

Postby Cmac1275 » Mon Sep 10, 2018 6:22 pm

teacher2017 wrote:
Allen wrote:You have my deep sympathies. Hang in there and remain hopeful. I had a 1 cm liver met, which was diagnosed immediately after colon cx diagnosis. After 6 FOLFOX treatments, the liver met was completely obliterated! The surgeon could not find it at surgery (open procedure) so he removed the entire lobe where it had been. Even the pathologist could find no evidence of the tumor. I don't know about the implantable pump, I had the standard 48 hr pump regimine. I'm hopeful that you'll have the same sort of outcome!

I've since completed 6 more FOLFOX treatments and I'll soon be entering the watchful waiting / scanning / periodic anxiety phase. Best of luck to you.



Thank you! I hope this is a bad memory very quickly. I don’t understand why it’s there- I just had chemo finish in April and my blood work, liver enzymes and cea have been normal all year. I need this out.


Hi Teacher. Definitely sending love and prayers your way.

I just recently underwent a liver resection of my right lobe and 10% of my left lobe on July 2nd. FOLFOX + Avastin worked really great. It made liver resection possible. Plus, my CEA markers went down from 60 to normal range in the 2s again.

Well, on August 9th I had a clear CT scan. A small leftover tumor was there but hadn't grown (the plan was always two surgeries to get everything). Then, on August 28th, I had an MRI. They found 5-6 "new" spots but only on "old" liver. Since the original MRI was denied by insurance company in June, we have no baseline to know if those were there. CT scan may have missed them. On September 4th, a PET scan showed spots lighting up on both lobes. They are all very small. And until my biopsy on 9/17/2018, we won't know for sure if it's cancer — or hopefully something else (scar tissue, inflammation from healing, etc.).

Well, I share this with you because for the first time, I've been emotionally rattled. Everything was going swimmingly. But, through research, a great medical team and support groups like this one...I've come to realize this is just part of the new normal. At least for some of us. Cancer, I know realize, will behave and do things we may never understand. But my outlook is still very positive despite the many tentacles cancer uses to impact us.

Yours is too. They caught it early. And that's a really good thing.

As such, I've stopped asking "why." I'm now focused on "what." What else can I do to beat the disease, or at least make life extremely difficult for it to thrive in my body? Diet, exercise, surgery, supplements as adjunct therapy. You name it. If it gets me to NEDville, I'm throwing the kitchen sink at it.

Stay positive. And most importantly, continue to be your own best advocate and stay proactive. You've got this!
42 yr, male, husband and father of 3
01/24/2018 — Dx with Stage IV Colon Cancer and liver mets
01/26/2018 — Partial colectomy. Two thirds colon removed
02/21/2018 — CEA @ 60
03/21/2018 — Began 6 rounds of FOLFOX / Avastin
06/21/2018 — CEA @ 4.7
07/02/2018 — Right hepatic lobectomy
08/28/2018 — MRI shows new spots on remaining ("old") liver)
09/04/2018 — PET scan shows new spots on both lobes
09/05/2018 — CEA @ 2.7

teacher2017
Posts: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Dang 1cm Liver Met!

Postby teacher2017 » Tue Sep 11, 2018 6:18 am

Cmac1275 wrote:
teacher2017 wrote:
Allen wrote:You have my deep sympathies. Hang in there and remain hopeful. I had a 1 cm liver met, which was diagnosed immediately after colon cx diagnosis. After 6 FOLFOX treatments, the liver met was completely obliterated! The surgeon could not find it at surgery (open procedure) so he removed the entire lobe where it had been. Even the pathologist could find no evidence of the tumor. I don't know about the implantable pump, I had the standard 48 hr pump regimine. I'm hopeful that you'll have the same sort of outcome!

I've since completed 6 more FOLFOX treatments and I'll soon be entering the watchful waiting / scanning / periodic anxiety phase. Best of luck to you.



Thank you! I hope this is a bad memory very quickly. I don’t understand why it’s there- I just had chemo finish in April and my blood work, liver enzymes and cea have been normal all year. I need this out.


Hi Teacher. Definitely sending love and prayers your way.

I just recently underwent a liver resection of my right lobe and 10% of my left lobe on July 2nd. FOLFOX + Avastin worked really great. It made liver resection possible. Plus, my CEA markers went down from 60 to normal range in the 2s again.

Well, on August 9th I had a clear CT scan. A small leftover tumor was there but hadn't grown (the plan was always two surgeries to get everything). Then, on August 28th, I had an MRI. They found 5-6 "new" spots but only on "old" liver. Since the original MRI was denied by insurance company in June, we have no baseline to know if those were there. CT scan may have missed them. On September 4th, a PET scan showed spots lighting up on both lobes. They are all very small. And until my biopsy on 9/17/2018, we won't know for sure if it's cancer — or hopefully something else (scar tissue, inflammation from healing, etc.).

Well, I share this with you because for the first time, I've been emotionally rattled. Everything was going swimmingly. But, through research, a great medical team and support groups like this one...I've come to realize this is just part of the new normal. At least for some of us. Cancer, I know realize, will behave and do things we may never understand. But my outlook is still very positive despite the many tentacles cancer uses to impact us.

Yours is too. They caught it early. And that's a really good thing.

As such, I've stopped asking "why." I'm now focused on "what." What else can I do to beat the disease, or at least make life extremely difficult for it to thrive in my body? Diet, exercise, surgery, supplements as adjunct therapy. You name it. If it gets me to NEDville, I'm throwing the kitchen sink at it.

Stay positive. And most importantly, continue to be your own best advocate and stay proactive. You've got this!


I wish you all good positive thoughts and all the luck in the world. Yes, cancer doesnt play by the rules. But I also think that with close monitoring we have a fighting chance to beat it out or at least back. I hate all of this and I miss my carefree life. They say stress is bad for us but I still can not seem to figure out how to not worry about cancer. This new normal is not something I’d wish on my worst enemy. Years ago I was asked if you could choose a different problem from a bowl of problems and return yours, would you? And I said no. Today I’d say yes. I’d trade this with something else.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

Re: Dang 1cm Liver Met!

Postby heiders33 » Tue Sep 11, 2018 7:11 am

I agree wholeheartedly!!!
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI


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