New stage 4 colon cancer diagnosis

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Bpaint
Posts: 68
Joined: Sun Oct 11, 2020 8:54 pm

New stage 4 colon cancer diagnosis

Postby Bpaint » Mon Oct 12, 2020 12:53 pm

My husband (age 41) was diagnosed with stage 4 colon cancer on August 31. His primary tumor is in his sigmoid colon, and he has more tumors in his liver, lungs and distant lymph nodes. His CEA number was 713. He has now gone through 2 rounds of folfox + avastin. He had to skip his last round because he developed pneumonia and his immune system numbers were too low. Hopefully they will be up this week so he can start treatment again.

We are feeling sad and overwhelmed. We have two little kids (ages 3 and 6), and my husband wasn't having any pain or symptoms, just some bleeding that his primary doctor said he was 99% sure was hemorrhoids. I found this message board in trying to research information about whether there is anything we can do in addition to the chemo that would help my husband's chances. I've been reading through some of the posts on here, and there is a lot of information, but it is hard to tell whether it applies to him. It seems like the usefulness of things like supplements might depend on what type of cancer it is? The only information we have from the pathology report is that it is "low probability of msi-h." But there is no information about mutations or anything like that.

I am wondering whether anyone else had to wait a long time to get the results from genetic testing? His oncologist said he was ordering testing on the tumor, but it has been about 6 weeks now and we still haven't heard anything.
husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
Liver, colon and node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix lungs stable about 6 months; all other areas stable
Start Folfiri + avastin 1/22
Stop Folfiri (lungs stable 6 mos); start Vectibix 7/22
Stop Vectibix 12/22 (lungs stable 5 mos this time)
SBRT on lung Mets scheduled for 1/22, will restart Folfiri

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: New stage 4 colon cancer diagnosis

Postby Lee » Mon Oct 12, 2020 6:06 pm

Welcome, sorry for the reason you are here.

I can not answer your last question as that was not an option for me. Hopefully someone else with pop in with the answer. Don't know if you have already done this, butt if not, PLEASE get a 2nd opinion at a major cancer hospital. Because of his age, you want to be treated as aggressively as possible. Can I assume, other than his cancer, is over all health is good. Major cancer hospital tend to be on the leading edge of tomorrow standard of care. Know there have been a lot of advancement in the past few years. Has your husband had a "foundation one" test?

Does colon cancer run in his family?

Where are you located,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

User avatar
beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: New stage 4 colon cancer diagnosis

Postby beach sunrise » Mon Oct 12, 2020 6:28 pm

Sounds like some feet dragging on oncologist part. It should not be taking 6 weeks. ***scratch that comment, I read it to fast. I have no idea about genetic testing
timeframe.**
And like Lee said, get a second opinion also. It might be very valuable!
Last edited by beach sunrise on Mon Oct 12, 2020 6:41 pm, edited 1 time in total.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

Bpaint
Posts: 68
Joined: Sun Oct 11, 2020 8:54 pm

Re: New stage 4 colon cancer diagnosis

Postby Bpaint » Mon Oct 12, 2020 6:31 pm

He has no colon cancer in his family and he is overall very healthy besides the cancer. He ran 15 miles the week before his diagnosis.
We are in Madison, WI at the carbonne Cancer center. As far as I know, he hasn’t gotten a foundation 1 test.
husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
Liver, colon and node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix lungs stable about 6 months; all other areas stable
Start Folfiri + avastin 1/22
Stop Folfiri (lungs stable 6 mos); start Vectibix 7/22
Stop Vectibix 12/22 (lungs stable 5 mos this time)
SBRT on lung Mets scheduled for 1/22, will restart Folfiri

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: New stage 4 colon cancer diagnosis

Postby roadrunner » Mon Oct 12, 2020 6:35 pm

In my view, six weeks — at least without explanation — is too long. And with these challenges, I support the recommendation to contact a major cancer center. MSK or MD Anderson would be good picks.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: New stage 4 colon cancer diagnosis

Postby Lee » Mon Oct 12, 2020 8:03 pm

Bpaint wrote:He has no colon cancer in his family and he is overall very healthy besides the cancer. He ran 15 miles the week before his diagnosis.
We are in Madison, WI at the carbonne Cancer center. As far as I know, he hasn’t gotten a foundation 1 test.


If possible, find out what testing they are doing on your DH. Not sure what your medical plan is, butt if possible get to Sloan Kittering Memorial Hospital (NYC) for a 2nd opinion. I was a stage IIIC, I got a verbal 2nd opinion over the phone with the Mayo Clinic .It was good to know the care I was getting local was the standard care for someone like me, stage III. Again, advancements in the past few years helps with the type of treatment plan DH should be getting.

At one time, one chemo was the standard "one size fits all cancer patients". Times have changes, when the experts can break down the cancer cells, mutations, etc (va testing), than the experts can look at target therapy to address DH unique cancer. Foundation One is one of those testing to determine the best course (treatment plan) your DH should be on. This includes traditional chemo, targeted chemo, immunotheapy or clinical trials. Check it out.

I know this is a crash course in medical science. Butt you will find a wealth of information here. Not to mention a place people who understand what you are going through. We have your back

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Bpaint
Posts: 68
Joined: Sun Oct 11, 2020 8:54 pm

Re: New stage 4 colon cancer diagnosis

Postby Bpaint » Mon Oct 12, 2020 8:46 pm

I appreciate your responses. I’m going to find out what’s going on with the testing so we can get an informed second opinion about treatment. Thank you all.
husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
Liver, colon and node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix lungs stable about 6 months; all other areas stable
Start Folfiri + avastin 1/22
Stop Folfiri (lungs stable 6 mos); start Vectibix 7/22
Stop Vectibix 12/22 (lungs stable 5 mos this time)
SBRT on lung Mets scheduled for 1/22, will restart Folfiri

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: New stage 4 colon cancer diagnosis

Postby Gravelyguy » Mon Oct 12, 2020 9:15 pm

I am in MN and have had very good care at Mayo. They would be somewhat close for you guys.

Hang in there,

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

rachelfromnyc
Posts: 60
Joined: Fri Oct 04, 2019 11:32 am

Re: New stage 4 colon cancer diagnosis

Postby rachelfromnyc » Mon Oct 12, 2020 11:31 pm

Your husband and I sound pretty similar. In terms of care, I started out at Lenox Hill then NYU then transferred to Sloan Kettering once it was confirmed that it was stage 4. I'm looking through my files to answer your question about genetic testing. Mine was done at MSK and it took 7 business days from the time they received the sample to when I received the results. So as others have indicated, 6 weeks is too long. As I've learned in my year or so of dealing with this, you definitely have to keep pushing and following up.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: New stage 4 colon cancer diagnosis

Postby boxhill » Tue Oct 13, 2020 10:36 am

I seem to recall my genetic testing taking at least 3 weeks in 2018, but there was some kind of delay involved that I don't recall. With the pandemic, a lot of lab work is taking longer all over the country. Nevertheless, if you can get your H's medical practice/genetic counselor to light a fire under them it wouldn't hurt. It is also possible that they are waiting on the genetic counselor to be able to present the results in person, in which case you could just ask them to have a telemedicine conversation and send the report.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: New stage 4 colon cancer diagnosis

Postby NHMike » Fri Oct 16, 2020 9:09 pm

Bpaint wrote:My husband (age 41) was diagnosed with stage 4 colon cancer on August 31. His primary tumor is in his sigmoid colon, and he has more tumors in his liver, lungs and distant lymph nodes. His CEA number was 713. He has now gone through 2 rounds of folfox + avastin. He had to skip his last round because he developed pneumonia and his immune system numbers were too low. Hopefully they will be up this week so he can start treatment again.

We are feeling sad and overwhelmed. We have two little kids (ages 3 and 6), and my husband wasn't having any pain or symptoms, just some bleeding that his primary doctor said he was 99% sure was hemorrhoids. I found this message board in trying to research information about whether there is anything we can do in addition to the chemo that would help my husband's chances. I've been reading through some of the posts on here, and there is a lot of information, but it is hard to tell whether it applies to him. It seems like the usefulness of things like supplements might depend on what type of cancer it is? The only information we have from the pathology report is that it is "low probability of msi-h." But there is no information about mutations or anything like that.

I am wondering whether anyone else had to wait a long time to get the results from genetic testing? His oncologist said he was ordering testing on the tumor, but it has been about 6 weeks now and we still haven't heard anything.


I'm sorry that you and your husband have to deal with this. 41 is too young for cancer.

I got my genetic results about six weeks after we started the paperwork but it was done by my son's boss as a favor.

Some hospitals can do the testing in-house but most send it out. So the tumor sample has to be sent by courier to a lab that does the testing. A lab tech prepares the sample block and puts it through a sequencing machine and then the output is run through a software pipeline for analysis and this can take many hours to run. Then the results are reviewed by a pathologist to write up a report. These things are run in a queue and there may be a lot of other tumor blocks to be tested so the actual process will take longer as you're tumor block processing is in a queue. My son said that the normal turnaround time is a week with normal operations.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Bpaint
Posts: 68
Joined: Sun Oct 11, 2020 8:54 pm

Re: New stage 4 colon cancer diagnosis

Postby Bpaint » Mon Oct 26, 2020 10:04 am

After bugging the oncologist about the testing results, I finally got a copy of them. The results say that my husband's tumor is MSS, low TMB, with mutations in APC, PIK3R1, and TP53. No mutations in KRAS or BRAF. Based on what I've read on this message board and elsewhere, this means that the cancer wouldn't be responsive to any known targeted therapies, like immunotherapy, right?

I want to get a second opinion about treatment, but my husband is hesitant because he is worried that we wouldn't know what to do if the second opinion recommended something different from his current treatment.
husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
Liver, colon and node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix lungs stable about 6 months; all other areas stable
Start Folfiri + avastin 1/22
Stop Folfiri (lungs stable 6 mos); start Vectibix 7/22
Stop Vectibix 12/22 (lungs stable 5 mos this time)
SBRT on lung Mets scheduled for 1/22, will restart Folfiri

User avatar
beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: New stage 4 colon cancer diagnosis

Postby beach sunrise » Tue Oct 27, 2020 2:28 am

Hi, I can't answer your question but want to say you are on the right track with gaining knowledge in the beginning. Way to go!!!
As rp1954 says alot on here "Expand the bloodwork and follow it."
As CRguy says alot on here "You miss more by not looking...than not knowing."
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: New stage 4 colon cancer diagnosis

Postby NHMike » Tue Oct 27, 2020 5:38 am

Bpaint wrote:After bugging the oncologist about the testing results, I finally got a copy of them. The results say that my husband's tumor is MSS, low TMB, with mutations in APC, PIK3R1, and TP53. No mutations in KRAS or BRAF. Based on what I've read on this message board and elsewhere, this means that the cancer wouldn't be responsive to any known targeted therapies, like immunotherapy, right?

I want to get a second opinion about treatment, but my husband is hesitant because he is worried that we wouldn't know what to do if the second opinion recommended something different from his current treatment.


KRAS is the most common. BRAF can be difficult to treat. You'd have to do some research on the specific mutations but it may be harder to use something really targeted as there are three mutations.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: New stage 4 colon cancer diagnosis

Postby Rikimaroo » Tue Oct 27, 2020 1:10 pm

Bpaint wrote:After bugging the oncologist about the testing results, I finally got a copy of them. The results say that my husband's tumor is MSS, low TMB, with mutations in APC, PIK3R1, and TP53. No mutations in KRAS or BRAF. Based on what I've read on this message board and elsewhere, this means that the cancer wouldn't be responsive to any known targeted therapies, like immunotherapy, right?

I want to get a second opinion about treatment, but my husband is hesitant because he is worried that we wouldn't know what to do if the second opinion recommended something different from his current treatment.


This is actually really good news. No KRAS or BRAF mutations means he will have more treatment options in regards to chemotherapy. MSS is usually open to Immunotherapy, TMB only plays a role on those with MSI, which is about 85% of Colerectal Cancer patients. TP53 and APC sucks which I have, means Tumor Suppression Gene is compromised which means harder to cure the cancer. I been fighting it for 4 years this December. I agree with everyone else, go to a major cancer center, MSK is close, or Cleveland Clinic in Ohio.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.


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