Good News!

Please feel free to read, share your thoughts, your stories and connect with others!
Paradise2020
Posts: 12
Joined: Mon Jul 13, 2020 1:05 pm

Good News!

Postby Paradise2020 » Thu Oct 08, 2020 8:31 am

DH was diagnosed end of May 2020 with stage 4 colon cancer. We were told mets to liver and lungs. Had liver biopsy to confirm. No lung biopsy. CC surgeon said DH needed chemo and sent him over to ONC that day. DH has had 6 rounds of FU5 with avastin and had CT scan afterwards which the Onc showed us to compare with original taken before chemo. I saw that the liver didn't appear to have the tumor anymore compared to the original scan. Since I'm certainly not a radiologist I really couldn't tell anything else from the scan.

DH just finished his 4th chemo of his next 6 rounds, total number 10, 2 to go. Before his chemo yesterday, the doctor said to DH: There is no cancer in your body, you are in remission. He said he could tell that from all the bloodwork and tests. DH's CEA is 1.5. Started at 7.1. I have said to the Onc various times that I was happy that his CEA was low, and what does it mean, how can CEA be that low and you still have cancer? He's always been cautious with his words that CEA was just a guideline. I was not in the room yesterday, but Onc told me via phone that DH was in remission. Doc wants DH to finish the last 2 rounds of chemo, which he is doing. Doc said after that will scan and give DH maintenance pill. I'll know more specifics on which pill, etc. when the doc prescribes it.

Throughout all the chemo DH has responded well and we've been living life as normal, which has been wonderful. Of course with strict corona precautions.

Needless to say we are very happy with what the Onc said. We are optimistically happy about this. We are also realistic that the dreaded C may return.

I've asked the Onc various times if DH would need surgery. He always says no.

Is this too good to be true? I guess if there is NED as everyone uses this term here, of course there wouldn't be surgery, since there's nothing to be removed? I don't know why, but even though I am so happy with what the doctor said, it's like I'm afraid to believe it? Is this possible after just a few months of chemo? Why didn't the ONC tell us when he showed us the scans after DH's first 6 rounds?

Thanks for listening. As someone else on this board has said, I don't get into too much discussion with DH about this. He is well aware of everything but prefers not to talk too much about it. I get it. That's my job.

Paradise2020
Posts: 12
Joined: Mon Jul 13, 2020 1:05 pm

Re: Good News!

Postby Paradise2020 » Fri Oct 09, 2020 6:21 pm

124 people have read my post. No responses. I was hoping to get advice/support from this group. I'm questioning myself and what the doctor has said. I don't know what to think any more. Have I said something wrong? I'm not too good at the terminology of everything. Is there something that people are afraid to say? Do I not post enough? I though this is a place that I can share my information/thoughts/feelings/fears. I'll continue to read this forum to gain information. I think I will search for a cancer support group in my area for support.

User avatar
Jack&KatiesMommy
Posts: 628
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Good News!

Postby Jack&KatiesMommy » Fri Oct 09, 2020 8:23 pm

Paradise....before I relaxed, I would get a second opinion from a board certified colorectal oncologist. I have never heard of anyone being cured through cehemo alone. Generally it is used to shrink the cancer to a controlled level so that the areas of cancer can be surgically removed. I think believeing that the cancer is gone and moving on to "maintenance chemo would be a mistake without seeking out a second opinion at a large cancer center. It sounds like your husband is responding really well to chemo...so now it the time to see what options you have to get him cured....the best time to seek your options is when he is doing well.

Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

User avatar
beach sunrise
Posts: 250
Joined: Thu Mar 05, 2020 7:14 pm

Re: Good News!

Postby beach sunrise » Fri Oct 09, 2020 10:09 pm

Hi Paradise, two things I learned right off on this forum that I follow is "Don't take surgical advice from an oncologist and don't take oncology advice from a surgeon."
It might be a good idea to get records together and make an appt with a board certified surgeon as Cynthia suggested. I would say do it soon as not to miss the surgery boat if its an opportunity right now.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Vana3
Posts: 42
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: Good News!

Postby Vana3 » Fri Oct 09, 2020 11:47 pm

I agree with everyone. Please seek out a second and third opinion....Oncologists and surgeons. I did chemo and then a liver resection. There were 2 very small spots In liver found by internal ultrasound during surgery that were not seen on ct scans. We always get a second opinion and have been surprised by the different approaches there can be. Has he had a pet scan or mri??? The good response to chemo is very positive!
Dx 36 yr, F, 7/19
T4aN2M1 Cea 5.1
5 cm tumor in cecum removed, 17 out of 45 LN
1 cm omental deposit removed
LVI +
Cea post surgery 4.2
MSS, KRAS g12d, Braf WT
MT: 10.9
8/20/19 MRI & PET small liver spots
9/19 - 3/20 FOLFOX
1/02/20 CEA 3.6, 2/15- 4.4 3/15- 4.6, 6/05 4.6
Liver resection 4/15/20
6/20 Ct scan clear
7/20 Cea 8.6
8/20 Cea 12.4, suspicious ovarian cyst
9/20 Hysterectomy SOB (Ovaries and uterus positive for CRC)
post surgery cea 2.6

boxhill
Posts: 609
Joined: Fri Apr 06, 2018 11:40 am

Re: Good News!

Postby boxhill » Sat Oct 10, 2020 12:53 pm

I wouldn't believe the liver is clear without an MRI, although it's great that your H has responded so well to chemo. I personally had a small liver met that did not show on a CT scan.

Where was your husband's primary tumor? Am I correct in thinking that it was not removed surgically?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
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 lymph nodes 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
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Good News!

Postby Andrea1976 » Sat Oct 10, 2020 1:35 pm

Good that he is responding to chemo well. My understanding is that you can only achieve cure with surgery in your husband’s case. Your onco is not aggressive. You can have 5 surgeons who say no to surgery and #6 says yes. If your husband is in good health he can go for cure and not just extending his life with chemo. Please go for 2nd opinion to a cancer center.
Please ask your onco directly: is he going for cure?
Stage I
pedunculate polyp in descending colon
moderately diff adenocarcinoma 0.6 cm
Tumor confined to the head of the polyp
Stalk margin 2 cm negative for dysplasia and malignancy
Polyp removed during colonoscopy 1/15/16
No lymphovascular involved
No surgery

User avatar
ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: Good News!

Postby ginabeewell » Sat Oct 10, 2020 2:50 pm

I agree 100% with the other posters about getting a surgical consult. Like others, have heard no cure without surgery. You need to be sure whether or not your oncologist is treating you with curative intent.

And I suspect this is why many didn’t immediately respond.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

Paradise2020
Posts: 12
Joined: Mon Jul 13, 2020 1:05 pm

Re: Good News!

Postby Paradise2020 » Mon Oct 12, 2020 9:02 am

Thank you everyone for your replies. I hope I didn't come across badly. Stressing out for sure. I am so thankful that DH has done so well. And thanks to you here I know we have a chance for a cure. My head is spinning with all of this. DH has agreed to get second opinion. He told me he is happy that he has a pitbull for a wife. LOL So, where do I go from here? We live in Naples, FL. Does anyone have any recommendations about where to go and what doc to go to for this? Currently at CC in Weston, FL. Moffit, Tampa FL which is obviously the closest place and convenient should DH need surgery? Should we fly to Sloane? CC in Cleveland who has easy access to his records? MD Anderson in Houston? We're originally from Long Island and have friends and family there. As I had mentioned DH has 2 more rounds of chemo then scans. I'm thinking once that is over I will have his records and scans sent to whoever we get the second opinion from. I also have to find out what the process is to send his records elsewhere. And if second opinion doc takes our insurance.

I have no idea what to say to his current Onc when we have the second opinion appointment lined up. He has been wonderful with DH's care. But I know that since he's an Onc, he's pro chemo, not pro surgery.

User avatar
Jack&KatiesMommy
Posts: 628
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Good News!

Postby Jack&KatiesMommy » Mon Oct 12, 2020 7:48 pm

I would call hospitals now to see what you need to do to get a second opinion there. I have been to MD Anderson, and a local cancer center (in Columbus Ohio where I live) and Memorial Sloan Kettering. I highly suggest contacting MSK....to get the ball rolling now.....the sooner you can get that other opinion....the sooner you and your DH can decide what course to take.

Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 9 guests