Biopsy came back positive. Now what?

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Cmac1275
Posts: 31
Joined: Mon Aug 06, 2018 4:21 pm

Biopsy came back positive. Now what?

Postby Cmac1275 » Thu Sep 20, 2018 4:49 pm

Hi folks, recently I had posted on another thread about several new liver mets that showed up only 2 months after liver resection. I had a biopsy on Monday, and it came back positive. I confirmed today that I am KRAS/MSS. I was tested for HER2 and that came back negative. Full Foundation One test is being ordered.

The disappointing part is that my surgeon now says there’s a very slim chance I would ever reach NED stage. I was told today I’m probably looking at continuous chemo moving forward.

That S-U-C-K-S.

Especially because everything was going extremely well. Until now. Not to mention my now unreliable CEA markers are totally normal.

On a related note, I was supposed to sign a consent form to start a Phase II trial from Abbvie. However, my onc wants to keep me on FOLFOX + Avastin because I did have a very good response to it for 6 rounds—which made liver resection possible in the first place. Plus, the doctor overseeing the trial said I might not get cleared to participate anyway.

Despite several “new” spots showing on my latest scans, they don’t know if all of them are truly new. It’s possible prior CTs missed them. The surgeon may have missed them too as they are quite small. Or, the microdisease was there and simply grew in the absence of chemo over the last 4 months. Therefore, they won’t necessarily consider my current diagnosis as real progression. You have to show quantifiable disease progression after taking FOLFOX/Avastin to qualify for the trial.

So for now, more FOLFOX/Avastin starting in a couple of weeks. Then re-staging. I suppose if we don’t like what we hear after this next round of chemo, we’ll start looking at other places like Memorial Sloan Kettering and MD Anderson for second and third opinions.

In the meantime, I’ve also setup an appointment in a couple of weeks with a naturopathic doctor to discuss adjuvant treatment with diet and supplements. It works for some. Maybe it will help me.

Thanks for letting me vent.
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

hiker
Posts: 59
Joined: Thu Aug 09, 2018 10:15 am

Re: Biopsy came back positive. Now what?

Postby hiker » Thu Sep 20, 2018 7:13 pm

If you only have liver mets, I would encourage you to contact MSK in NYC and see if Dr. Nancy Kemeny will accept you as a patient. She is an expert, probably the leading expert, on treating liver mets from colon cancer. A year and half ago I was told by several doctors that I had two years left to live, at most. My body is currently cancer free thanks to her and my surgeon Dr. D'Angelica.

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

User avatar
bitchslapped
Posts: 1483
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Biopsy came back positive. Now what?

Postby bitchslapped » Thu Sep 20, 2018 9:29 pm

Cmac1275 wrote:Despite several “new” spots showing on my latest scans, they don’t know if all of them are truly new. It’s possible prior CTs missed them. The surgeon may have missed them too as they are quite small. Or, the microdisease was there and simply grew in the absence of chemo over the last 4 months. Therefore, they won’t necessarily consider my current diagnosis as real progression. You have to show quantifiable disease progression after taking FOLFOX/Avastin to qualify for the trial.


I feel your frustration. The fact is they just don't know. Why is that? No PET scan or MRI @ original dx? ONE liver resection is enough for anybody; not the same as having a tooth extracted. My DH back in '04 rec'd about 5 months/10 rounds of FOLFOX + Avastin. Then we had to wait the longest 4 months before liver resection. Had the cancer come back in the interim, he w/n be a candidate for liver surgery.

Cmac1275 wrote:So for now, more FOLFOX/Avastin starting in a couple of weeks. Then re-staging. I suppose if we don’t like what we hear after this next round of chemo, we’ll start looking at other places like Memorial Sloan Kettering and MD Anderson for second and third opinions.

In the meantime, I’ve also setup an appointment in a couple of weeks with a naturopathic doctor to discuss adjuvant treatment with diet and supplements. It works for some. Maybe it will help me.


Some links here on the forum for help in researching clinical trials where they will do the searching for you:

viewtopic.php?f=1&t=53238


Also outside link:
http://trialfinder.fightcrc.org/


U.S. News & World Report Best Cancer Hospitals 2018/2019:
https://health.usnews.com/best-hospital ... ngs/cancer


You indicated that is a possibility for you. If you have the means, why wait? Outside major cancer centers can work w/your local docs & it all takes time in sending records, initial consultation, paperwork, etc. You don't owe your doctors anything.

Best Wishes

BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

stu
Posts: 848
Joined: Sat Aug 17, 2013 5:46 pm

Re: Biopsy came back positive. Now what?

Postby stu » Fri Sep 21, 2018 3:09 am

I feel for you and it’s a horrible obstacle to climb but it’s exactly what my mum got told . I think you are possibly an excellent responder to chemo but it brings its own issues in detecting where the disease is .
Still holding out for this lot of chemo to knock it out and give you more options at the end of it .
It certainly took two years of chemo for my mum to gain the upper hand but you also have Dr K there to consult with .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

radnyc
Posts: 299
Joined: Tue Apr 06, 2010 6:32 pm

Re: Biopsy came back positive. Now what?

Postby radnyc » Fri Sep 21, 2018 8:42 am

Since you don’t have mets anywhere else, you’re a great candidate for the HAI pump treatment at MSK. I would be calling them today.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

Cmac1275
Posts: 31
Joined: Mon Aug 06, 2018 4:21 pm

Re: Biopsy came back positive. Now what?

Postby Cmac1275 » Fri Sep 21, 2018 10:20 am

hiker wrote:If you only have liver mets, I would encourage you to contact MSK in NYC and see if Dr. Nancy Kemeny will accept you as a patient. She is an expert, probably the leading expert, on treating liver mets from colon cancer. A year and half ago I was told by several doctors that I had two years left to live, at most. My body is currently cancer free thanks to her and my surgeon Dr. D'Angelica.

hiker


Hiker, were they able to remove all mets once you had resection? Just curious if resection is a qualification for HAI. I was told yesterday that the main impass to surgery is the spread of current mets. There are 5-6 small mets <1 cmm. But, they just took out my entire right lobe in last July. Surgery would entail too much liver removal on my left lobe and parts of my regenerated liver.
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

Cmac1275
Posts: 31
Joined: Mon Aug 06, 2018 4:21 pm

Re: Biopsy came back positive. Now what?

Postby Cmac1275 » Fri Sep 21, 2018 10:27 am

bitchslapped wrote:You indicated that is a possibility for you. If you have the means, why wait? Outside major cancer centers can work w/your local docs & it all takes time in sending records, initial consultation, paperwork, etc. You don't owe your doctors anything.

Best Wishes

BS


We have now reached out to MSK. They’ve got an open chart for me. All we need to do is figure out when we can travel up there. We live in Raleigh, so it’s not too challenging from a logistics perspective.

It’s crazy how things change, though. We’ve gone from “we think you’re a good candidate for resection with curative intent” to now, “continuous chemo is your best option.” That just sounds like a proverbial nail in the coffin.

Not having it.
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

hiker
Posts: 59
Joined: Thu Aug 09, 2018 10:15 am

Re: Biopsy came back positive. Now what?

Postby hiker » Fri Sep 21, 2018 10:35 am

I had 3-4 mets spread over both lobes and they were all removed during the resection and HAI pump implant surgery. However, if you have mets that can't be resected they can install the pump, hit the mets with super powerful chemo to eliminate them or shrink them enough that surgery may be a possibility in the future. Please get to MSK (Dr. Kemeny if at all possible) - they can do things others can't.

If you need any info (regarding logistics, places to stay, etc.), please feel free to PM me. I'll be happy to help any way I can.

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

Cmac1275
Posts: 31
Joined: Mon Aug 06, 2018 4:21 pm

Re: Biopsy came back positive. Now what?

Postby Cmac1275 » Mon Sep 24, 2018 8:15 am

hiker wrote:I had 3-4 mets spread over both lobes and they were all removed during the resection and HAI pump implant surgery. However, if you have mets that can't be resected they can install the pump, hit the mets with super powerful chemo to eliminate them or shrink them enough that surgery may be a possibility in the future. Please get to MSK (Dr. Kemeny if at all possible) - they can do things others can't.

If you need any info (regarding logistics, places to stay, etc.), please feel free to PM me. I'll be happy to help any way I can.

hiker


Thanks, Hiker.

All we have to figure out at this point is insurance. I haven't been working since late February 2018 due to chemo and surgeries. I was granted North Carlina Medicaid for a year. But, I won't be able to use that out-of-state. I checked in to Healthcare.gov to see about getting private insurance again. Enrollment doesn't open until November. But we may just go and pay our initial consultation out of pocket to get things started while we figure out insurance.
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

hiker
Posts: 59
Joined: Thu Aug 09, 2018 10:15 am

Re: Biopsy came back positive. Now what?

Postby hiker » Mon Sep 24, 2018 8:52 am

I completely understand the issue with having good insurance. Without it, I would be bankrupt at this point.

MSK has financial assistance for those who qualify, here's a link to their webpage:

https://www.mskcc.org/insurance-assistance/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

Cmac1275
Posts: 31
Joined: Mon Aug 06, 2018 4:21 pm

Re: Biopsy came back positive. Now what?

Postby Cmac1275 » Wed Oct 03, 2018 4:06 pm

@hiker,

I wanted to follow up on this thread. I was pleasantly surprised to hear that Duke may begin offering HAI treatment soon. I had a follow-up with my oncologist and she mentioned to surgeons from MSK were coming down to meet with the board. If I understood correctly, they would be relocating and spearheading this particular treatment option here in North Carolina.

Meanwhile, I have just started chemo again. Despite my last session being 5/16/2018, all my labs came back great. CEA rose a bit to 3.1, which I can live with. And in the meantime, I have an appointment with a naturopathic doctor this coming Monday. Hopefully get some nutrition and supplement ideas to slow this sucker down as much as possible and live a long good life!
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


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