Dang 1cm Liver Met!

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

Re: Dang 1cm Liver Met!

Postby teacher2017 » Mon Aug 27, 2018 1:07 pm

dianetavegia wrote:CURE CHART for Stage IV after hepatic resection.


https://www.ncbi.nlm.nih.gov/pubmed/25398280


Thank you for this. I had 12/17 LNs involved with the initial tumor. I don’t think the stats are the same. My other issue is that this new met occurred after I stopped chemo in April or possibly during. I don’t know what to do!
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

hiker
Posts: 73
Joined: Thu Aug 09, 2018 10:15 am

Re: Dang 1cm Liver Met!

Postby hiker » Mon Aug 27, 2018 1:24 pm

heiders33 wrote:I just met with Dr Kingham at MSK and they are recommending resection with HAI pump installation and then six months of Folfiri. They also mentioned a clinical trial that I might qualify for run by Dr Kemeny. This is an aggressive approach because I am young and healthy. They said they didn’t start recommending the pump to people with 1 spot until a couple years ago when they did a study showing survival benefit. Teacher, did you decide yet what you are going to do? I have not decided yet but am continuing to see my oncologist and Dr Kingham this week.

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
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

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

Re: Dang 1cm Liver Met!

Postby heiders33 » Mon Aug 27, 2018 2:05 pm

Thanks, hiker! Will do.
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

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

Re: Dang 1cm Liver Met!

Postby heiders33 » Mon Aug 27, 2018 2:09 pm

teacher2017 wrote:
heiders33 wrote:I just met with Dr Kingham at MSK and they are recommending resection with HAI pump installation and then six months of Folfiri. They also mentioned a clinical trial that I might qualify for run by Dr Kemeny. This is an aggressive approach because I am young and healthy. They said they didn’t start recommending the pump to people with 1 spot until a couple years ago when they did a study showing survival benefit. Teacher, did you decide yet what you are going to do? I have not decided yet but am continuing to see my oncologist and Dr Kingham this week.


Hi-
I have been researching like a crazy person. I just don’t like this pump idea for only one resectable met. It can totally blow out your liver forever! I read a lot of cases where it was not the miracle cure everyone says it is. I also do not like that other hospitals are not on board with it. Only some and many say it’s very old practices. I don’t like that MSK only did a study on their own patients. They will even remove your appendix and gall bladder during surgery and the cut is straight down your middle. Maintenance on the pump is a commitment too. People don’t remove it for 5-7 years because it cannot be put in again. It also has to be filled every two weeks with chemo and drained. Afterwards it needs glycerol every 6-8weeks. To remove it is another big surgery. Recovery will be 3 months for one liver met? I don’t like this idea. And there are no guarantees. Some people get a laparoscopic resection and no chemo and live a normal life. Read above! What are you thinking? I’m having surgery on sept 12.


So you’re having surgery but not having the pump installed? This is a hard one. Yes my other surgeon told me that MSK would “push the pump.” They mentioned removing the gallbladder but didn’t mention a big cut, said it would be laparoscopic.
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

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

Re: Dang 1cm Liver Met!

Postby heiders33 » Mon Aug 27, 2018 2:59 pm

Just wondering another thing: what’s the issue with them only using their own patients for the study? Is it because it wasn’t randomized?
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

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

Re: Dang 1cm Liver Met!

Postby teacher2017 » Mon Aug 27, 2018 6:21 pm

heiders33 wrote:Just wondering another thing: what’s the issue with them only using their own patients for the study? Is it because it wasn’t randomized?


No idea really. But as for the cut, if you are getting the pump , it’s a full blown open surgery. Be aware of that plus months of recuperation. I don’t know if it’s worth or the all that. So torn.
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 » Mon Aug 27, 2018 6:41 pm

Hm, they told me it was a month of recovery. I’ll ask again on Thursday.
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

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

Re: Dang 1cm Liver Met!

Postby teacher2017 » Tue Aug 28, 2018 4:46 pm

Question for those who did folfiri- did you lose your hair?
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

hiker
Posts: 73
Joined: Thu Aug 09, 2018 10:15 am

Re: Dang 1cm Liver Met!

Postby hiker » Tue Aug 28, 2018 7:06 pm

I did 11 rds of Folfiri and 3 of Folfox and I did not lose my hair - it did thin a bit, but no one really noticed other than me.

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

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

Re: Dang 1cm Liver Met!

Postby heiders33 » Wed Aug 29, 2018 7:49 pm

I met with my oncologist today. He downplayed the pump because it’s hardly used anywhere anymore and systemic chemo alone has been shown to be just as effective (although of course MSK’s own study said differently). We discussed my situation and basically agreed that liver resection followed by systemic chemo (targeted based on testing the liver tumor for any mutations) is a reasonable approach. He acknowledged that there is not one way to do this, but given my history with liver enzymes elevating on chemo he thinks it’s best to do resection first. This history also makes me question the pump. I meet with the MSK surgeon again tomorrow and will make a decision after that. I may decide to go the non-pump route but still transfer all of my care over to MSK.
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

hiker
Posts: 73
Joined: Thu Aug 09, 2018 10:15 am

Re: Dang 1cm Liver Met!

Postby hiker » Thu Aug 30, 2018 7:33 am

Ask your oncologist this question: "How many stage iv patients do you have alive after 5 years?" Dr. Kemeny has almost 80% of her patients who do HAI along with systemic alive after 5 years. I brought up the pump to one of the oncologists who told me I had at most 2 years to live and he said the same thing - it's old technology, it's unproven, blah, blah, blah. Well, here I am 18 months out from diagnosis and currently cancer free.

Is it possible to just do the resection and chemo and be cured? Absolutely. But the stats say there is a 70% chance the cancer will come back. The pump takes that % down significantly.

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

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

Re: Dang 1cm Liver Met!

Postby heiders33 » Thu Aug 30, 2018 1:07 pm

Yup, hiker, I get all that. I met with Dr Kingham at MSK today and he gave me the spiel again. He specializes in laparoscopic surgeries so it would not be open. I’m going to think it over over the weekend, but I am leaning toward the pump, mainly bc I am young and I live in NYC so it would be relatively easy for me.

I have a new frustration in that I think my oncologist did not test for KRAS on the original tumor even though he said he did. This means getting slides sent over to MSK and it could take a while for them to test them, which means delaying surgery. This determines whether I would get in Kemeny’s trial and what type of pump I would get. If indeed he didn’t test for KRAS I am going to ask him why the hell not.
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

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

Re: Dang 1cm Liver Met!

Postby teacher2017 » Fri Aug 31, 2018 2:04 pm

So I did my pre survey visit with dr. jarnigan at MSK. He was very knowledgeable and comforting. I told him that I was leaning against the pump and not the open surgery. He was very nice and said it’s a personal decision and did not press me. The nurse said it was basically used for those who were inoperable but some choose to have it put in. No guarantees again she said. So I feel satisfied with my decision. He even said that if it returns, we can always put it in later on. So I feel ok about this decision. My head is clear. I just read a bunch of cases where people gif the pump and it caused an infection and blockage in the bile duct and I can’t do it for now on one liver met. Maybe I’ll regret my decision. But I hope there are some years that I am free of the port and the pump to be less of a cancer patient again. Good luck with your decision. It’s a very hard one. Go with your gut.
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

hiker
Posts: 73
Joined: Thu Aug 09, 2018 10:15 am

Re: Dang 1cm Liver Met!

Postby hiker » Fri Aug 31, 2018 2:18 pm

Being satisfied with the decision is what matters.

I wish you the best.

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

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

Re: Dang 1cm Liver Met!

Postby heiders33 » Fri Aug 31, 2018 2:31 pm

Yes, what matters is that you made the right decision for you. It is a very hard one for people in our situation. I appreciate not wanting to feel like a cancer patient, and certainly the pump is always an option later if needed.
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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