Stage 3 to 4

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heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Stage 3 to 4

Postby heiders33 » Sat Oct 27, 2018 1:06 pm

Hi @cartech78, happy to help. I thought about DM'ing you, but then thought this info might be helpful to others so posting it here. Sorry chadwick for hijacking your thread!

If you are starting treatment on Monday, then you will most likely not get a second opinion from MSK. I tried to get a second opinion from them while I was in the middle of my XELOX treatment last year and it was against their policy. They want you to be out of treatment and have a fresh scan as a baseline for the next thing. So if you really want a second opinion from them, I would consider delaying your treatment on Monday. However, make sure you talk to your oncologist about this, and be sure to call MSK directly, don't wait for them to email back. Yes it is Nancy Kemeny's office, and I have found they are much easier to reach by phone. You will actually start off with a referral specialist (not Kemeny's office directly) who will tell you what records and documents she needs you or your doctor to send to them. You can find the referral number on MSK's website. Just tell them you are interested in the pump program and mention Dr. Kemeny.

I have never heard the term "trial" used in relation to the Medtronic pump. Dr. Kemeny is running a clinical trial, which is the old Codman pumps, FOLFIRI + Vectibix (hiker did this last year). I was not eligible for that trial because I am a KRAS mutant and Vectibix is ineffective for me. So they implanted the new Medtronic pump, which Medtronic is manufacturing as a replacement for the Codman pumps. You are right that they use the Codman catheters. The Medtronic pumps themselves are different from Codman because they are battery powered (Codman is pressure powered) and have to be refilled and reprogrammed every two weeks, even after chemo ends (Codman is every six weeks). I actually didn't realize this until after my surgery, although it wouldn't have changed my mind. My surgeon was Dr. T Peter Kingham and he did the entire surgery robotically and laparoscopically - liver resection and pump implantation. The referral specialist who I initially called and sent documentation to was the one who set up my appointment with him. I think he is the only there who does this surgery laparoscopically. Dr. Kemeny is now my oncologist -- she oversees patients with both types of pumps.i should say that, if you are not a KRAS mutant, you may be eligible for the clinical trial.

It is very easy to get into MSK by calling their referral line. But you have to not be in the middle of treatment. You also need to think about convenience. Is there a pump program in Chicago? This I don't know, but if you go to MSK you will have to fly back every two weeks. Sorry for my ignorance, but I'm not sure how people who aren't proximate to NYC manage the Medtronic pumps. Maybe someone else can chime in.

You are also very fresh out of surgery so I'm not sure how soon they would allow you to have a HAI implantation. Best thing is to talk to your oncologist and call MSK on Monday. If you find out anything different than I just posted here, let us know. Good luck!
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

chadwick1
Posts: 28
Joined: Sat Oct 13, 2018 9:04 am
Location: Upstate NY

Re: Stage 3 to 4

Postby chadwick1 » Sat Oct 27, 2018 9:08 pm

heiders33 wrote:Sorry chadwick for hijacking your thread!

Not at all please do! I'm glad you can give cartech78 some good info. And your previous post was definitely not more than I wanted to know! I'm very curious about what protocols you all are following and want to learn as much about different options as I can. Even the pump details in case I do end up being eligible. Interesting about the two different types--my wife had read somewhere that they were discontinued, but obviously they (all) aren't if they are still offering them, so that makes sense now.

FOLFIRI was mentioned several times for me too, sounds like that's the standard next one up. I'm hoping I can get the liver resection ASAP, get an answer on the lung, and get started on that. Funnily enough Dr. Kingham is the surgeon I was referred to--he's who I'm seeing on Monday. I'm glad to hear that's how he did the surgery, I was hoping that would be the case.

heiders33 wrote:a small price to pay for still being alive in a few years.

cartech78 wrote:but i will fly to Mars if I have to

Absolutely, I hear that. I want to do whatever it takes to beat this!
DX 2017, 37yo father of two
Stage 3b RC (T3N1bM0) normal CEA, KRAS G12V
Radiation + 5FU
LAR w/ temp loop ileo. 2/33 lymph
FOLFOX, 9 rounds
2018 CT mass in liver & lung
MRI confirms liver, Stage 4
Liver resection
2019 lung nodule shrank, monitor
Lung nodule grew again, resection
2020 CT new lung nodule + 2 lymph nodes
FOLFIRI, good response
2021 pause FOLFIRI, attempt lobectomy, aborted
Radiation to lung

cartech78
Posts: 78
Joined: Thu Oct 25, 2018 6:22 pm

Re: Stage 3 to 4

Postby cartech78 » Sat Oct 27, 2018 11:08 pm

Thanks for the reply guys. I figured MSK wouldn’t see me until after restaging like Mayo and MD anderson said as well. At this point I think it maybe a good idea to go through a couple rounds of Chemo just to slow things down that may be potentially growing if that makes sense. Mayo wants to see me on Jan 8th so i figured i would see what they have to say. I truly believe the HAI pump would be key in trying to save my life. I have to admit traveling to New York every 2 weeks would be a burden on me.
The trial she is running i found last night and looks like it just opened phase 2 on the 2nd of this month and it specifically states its for using the coddermam catheter on the medtronic pump. I also noticed that other hospitals like MD Anderson, universty of Chicago, and Clevland clinc who use to install HAI pumps don’t seem to anymore since the codderman pump was discontinued. I wonder if she is seeking FDA approval so more hospitals can use that procedure again possibly? I am new to all this and trying to make my way through mountains of information while I’m freaking out about this on the inside. I am going to call Them first thing Monday Morning to see what I can learn and if I find out anything i will repost in here hopefully for everyones benefit. Im glad I found this group , it has helped me immensely. A week ago i was border line suicidal about this as I just don’t want to be a burden to my family. Since coming here and immersing myself in this forum I have decided I owe it to my daughter and Wife to fight this as hard as I can. They Also have really helped me get through these last 3 weeks of hell. If I die from this disease im going down swinging. Now i just have to try to get my ONC on board with being more aggressive with me and less dark. I want to try more then just Chemo but he just seems to act like im a lost cause which doesn’t help much. Anyways thanks you guys for your replies. Its very much appreciated.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon
23 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20

cartech78
Posts: 78
Joined: Thu Oct 25, 2018 6:22 pm

Re: Stage 3 to 4

Postby cartech78 » Sat Oct 27, 2018 11:44 pm

By the way, this is the trial info that i found.

NCT03693807, 18-343, A Study of the Use of the Medtronic Pump and Codman Catheter to Give Chemotherapy to Patients With Colorectal Carcinoma or Cholangiocarcinoma.

If you go to clinical trials.Gov and search that number it should come up for anyone else out there whose interested. I tried to post the link but it didn’t seem to work. Im not good with this stuff tho so it’s probably me :P . It said it was open and recruiting.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon
23 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Stage 3 to 4

Postby heiders33 » Sun Oct 28, 2018 1:14 pm

Thanks for the info, cartech. It's possible I wasn't included in this study because Dr. Jarnagin wasn't my surgeon, and it looks like he's one of the principals. However, I seem to be the perfect candidate for it, so I'll ask if I can be enrolled. It looks like it just started on October 18. I like the idea of helping others in the future.

Also, amen to finding an onc who will get you on a path to NED! It is possible and you will find many positive Stage IV stories on this board. Don't give up until you find someone who will fight for you and not give up.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Stage 3 to 4

Postby teacher2017 » Wed Nov 21, 2018 9:47 pm

So glad you decided you were going to fight this with all you’ve got! I went from stage 3 to 4, four months after chemo stopped. Boy was I pissed off! Devastated everything!!!! I had one liver met removed. It was u fee 2cm which means it was early. I was lucky to be operable. It was laproscopic and I was out of the hospital after one overnight stay. Onc said no chemo either. I think it’s because it was so close to the first chemo. I pray this is the end of this. Surgery is curative- remember that! There are tons of procedures that can get you to NED. Study everything. Ask questions here. Everyone is so knowledgeable. I hope you find out that you are meant to live this life. Make it happen!
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Stage 3 to 4

Postby mpbser » Sat Nov 24, 2018 8:38 am

On other threads I have noted the wide span of differing opinions among oncologists when it comes to chemo, particularly whether to do "mop up" chemo or not. My husband had only 4 rounds of Xelox/Capeox before his back to back colectomy and liver surgery and no chemo afterwards. This less aggressive approach surprised me, to be honest, because I had had the impression that almost all oncologists were quite gung ho about chemo, e.g. the more the better. My husband's oncologist at Mass General reasoned this way: my husband is young, he responded extremely well to the pre-surgeries chemo, there was only the one met to the liver which was excised with clear margins, and people can develop a "tolerance" to chemo so might as well take a conservative approach for now. So far so good although he has a MRI on Tuesday which will tell us if he is still NED.
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

chadwick1
Posts: 28
Joined: Sat Oct 13, 2018 9:04 am
Location: Upstate NY

Re: Stage 3 to 4

Postby chadwick1 » Mon Nov 26, 2018 8:51 pm

teacher2017, thanks for that! Sounds like we have a similar story, mine appeared just 6 months after stopping folfox. Yes, very devastating! So I had my liver resection on 11/6 and it went really well! Margins were clear, and he said everything else in the area looked fine. And yeah those laparoscopic procedures are amazing--I was out post op day 2 and off pain meds in a week! Still not allowed to lift anything heavy, which is trouble with a 1 and 3 year old, but we’re managing pretty well.

I asked him about post op chemo and he told a similar story to what you heard mpbser, and that for a single, operable liver met he thought it’d be better to wait and watch for now (CTs every 4 months for 2 years). He said in Europe they are more conservative about “mop up” chemo whereas here it’s very common but approaches are changing. I also asked about the pump again before surgery and he concurred with the med onc that it wouldn’t be a good idea with the real possibility of lung mets.

So it comes down to the result of that next scan of the lung, scheduled for January 22nd. It stinks having to sit and wait that long in limbo, but everyone says it shouldn’t be done any sooner. I’m still hopeful it will turn out to be nothing (I’ve had another similar sized lung nodule since the start that’s unchanged, so it’s plausible), but preparing for it to be a met. Hope for the best, plan for the worst. If it is positive, sounds like the plan will be to meet with a thoracic surgeon to see about getting it ablated or resected. No problem, I can do that; curative surgery!

Good luck tomorrow mpbser!
DX 2017, 37yo father of two
Stage 3b RC (T3N1bM0) normal CEA, KRAS G12V
Radiation + 5FU
LAR w/ temp loop ileo. 2/33 lymph
FOLFOX, 9 rounds
2018 CT mass in liver & lung
MRI confirms liver, Stage 4
Liver resection
2019 lung nodule shrank, monitor
Lung nodule grew again, resection
2020 CT new lung nodule + 2 lymph nodes
FOLFIRI, good response
2021 pause FOLFIRI, attempt lobectomy, aborted
Radiation to lung

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Stage 3 to 4

Postby mpbser » Tue Nov 27, 2018 2:01 pm

Thanks for the well wishes, chadwick. I don't want to hijack this thread so I will post an update elsewhere.
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

chadwick1
Posts: 28
Joined: Sat Oct 13, 2018 9:04 am
Location: Upstate NY

Re: Stage 3 to 4

Postby chadwick1 » Wed Jan 23, 2019 4:50 pm

Hi all, I wanted to report back in with an update as I just had another CT yesterday. It was good news: the suspicious lung nodule shrunk!! So it’s very likely not a metastasis, a big relief!

Of course, I can’t seem to get a completely unambiguous scan, as they found a new lesion in the liver which the radiologist classified as possibly postoperative change or possibly a small metastasis. My onc thought it was pretty likely to be just a post-op change, given where it is and the size/time period, plus the surgeon said he had looked around during the surgery and didn’t see anything suspicious. But she’s going to get him to take a look at the scan and give his opinion too.

If that’s the case I guess I’d be maybe-sorta NED?! I’m set up for another scan in March so hopefully that one can really confirm it.
DX 2017, 37yo father of two
Stage 3b RC (T3N1bM0) normal CEA, KRAS G12V
Radiation + 5FU
LAR w/ temp loop ileo. 2/33 lymph
FOLFOX, 9 rounds
2018 CT mass in liver & lung
MRI confirms liver, Stage 4
Liver resection
2019 lung nodule shrank, monitor
Lung nodule grew again, resection
2020 CT new lung nodule + 2 lymph nodes
FOLFIRI, good response
2021 pause FOLFIRI, attempt lobectomy, aborted
Radiation to lung

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: Stage 3 to 4

Postby Punky44 » Wed Jan 23, 2019 5:47 pm

Hey that sounds like good news!! Hopefully you can get some reassurance without any weird gray areas to deal with at your next scan!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

sailinjohn
Posts: 1
Joined: Sun Jan 29, 2017 4:23 pm

Re: Stage 3 to 4

Postby sailinjohn » Fri Jan 25, 2019 11:03 am

I am 76 and was diagnosed with rectal cancer about 7 years ago with stage 3-C. They gave me scans every 6 months for about 4 years, then yearly to watch some nodules in my lungs.........they never seemed to grow larger, so MD Anderson graduated me to their 'Survivorship' program........Thankfully and I will have a colonoscopy soon.......last one 3 years ago. I love the good work that 'Colon Talk' is doing!!

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Stage 3 to 4

Postby LPL » Fri Jan 25, 2019 2:19 pm

sailinjohn wrote:I am 76 and was diagnosed with rectal cancer about 7 years ago with stage 3-C. They gave me scans every 6 months for about 4 years, then yearly to watch some nodules in my lungs.........they never seemed to grow larger, so MD Anderson graduated me to their 'Survivorship' program........Thankfully and I will have a colonoscopy soon.......last one 3 years ago. I love the good work that 'Colon Talk' is doing!!

Thank you for posting ’hope’ :)
Best of luck with your upcoming colonoscopy!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

chadwick1
Posts: 28
Joined: Sat Oct 13, 2018 9:04 am
Location: Upstate NY

Re: Stage 3 to 4

Postby chadwick1 » Fri Jan 25, 2019 9:21 pm

Thanks Punky44, and thanks sailinjohn for sharing that--it's wonderful to hear!
DX 2017, 37yo father of two
Stage 3b RC (T3N1bM0) normal CEA, KRAS G12V
Radiation + 5FU
LAR w/ temp loop ileo. 2/33 lymph
FOLFOX, 9 rounds
2018 CT mass in liver & lung
MRI confirms liver, Stage 4
Liver resection
2019 lung nodule shrank, monitor
Lung nodule grew again, resection
2020 CT new lung nodule + 2 lymph nodes
FOLFIRI, good response
2021 pause FOLFIRI, attempt lobectomy, aborted
Radiation to lung


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