2 years since diagnosis

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JMRWife
Posts: 71
Joined: Mon Oct 05, 2015 9:41 pm

Re: 2 years since diagnosis

Postby JMRWife » Sat Aug 07, 2021 5:23 pm

It's important to share good news. All the blessings to you, your husband, and your puppy.
Age 58.
4/27/2021 - Dx obstructing "apple core" sigmoid tumor at 30cm. MMR proficient. 4/28: Diverting colostomy.
Started neoadjuvant Folfox 5/18; CEA 107.
Aug 11: 7 rounds Folfox completed. CEA 3.2.
Pathology: COLON, SIGMOID (COLONOSCOPY): -- INVASIVE ADENOCARCINOMA, MOD DIFFERENTIATED

Clinical stage stage IIA. (negative lymph nodes). By imaging at least clinical stage 3 (abnormal lymph nodes on CT), but given negative mesenteric lymph nodes biopsy - considered at least stage 2.

catstaff
Posts: 127
Joined: Wed Mar 03, 2021 11:37 am

Re: 2 years since diagnosis

Postby catstaff » Mon Aug 09, 2021 12:03 pm

Thank you for the update. Your husband's case has some similarities to my husband's (G3 tumor, distal lymph nodes) so it helps me feel more optimistic. He was also diagnosed about six months after yours so we're not far apart on the journeys. My husband, however, has a met that may actually be a local recurrence, and a bone met (still due to lymph spread) as well as distal nodes. He is responding well to FOLFIRI+bev so far but we'll have to see how it goes after another few cycles, and whether they may be willing to mop up the larger mets if the lymph nodes seem to be under control.

I am not expecting a cure since cancer is a biologically complex disease, but it really seems that except for (many) infectious diseases, few maladies are really "curable," yet there are many that can be managed for years or decades with drugs and/or lifestyle modifications, such as diabetes and heart disease. That's where my hopes lie, in a more reliable treatment that will keep it at bay over a long term.

You mentioned going to several different centers; were most of them reluctant to treat him at all? CAPEOX plus Avastin would seem to be one of the standards for first-line treatment. I have been happy with my husband's oncologist so far, but may need to seek a second opinion about those two mets so was wondering what your experience with multiple opinions was like.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Siti
Posts: 230
Joined: Thu Aug 01, 2019 10:58 am

Re: 2 years since diagnosis

Postby Siti » Fri Sep 10, 2021 4:19 am

catstaff wrote:You mentioned going to several different centers; were most of them reluctant to treat him at all? CAPEOX plus Avastin would seem to be one of the standards for first-line treatment. I have been happy with my husband's oncologist so far, but may need to seek a second opinion about those two mets so was wondering what your experience with multiple opinions was like.



Please forgive my late reply, selfishly I don’t log on as frequent anymore due to my own mental health (I’ll explain that another day).

To answer your question, yes, the first oncologist refused to operate on him and pretty much said he has ~2 years to live! Luckily my uncle was an oncologist in Singapore and he recommended for us to fly over from the Netherlands to get treated there. We packed our bags, flew there on the next flight and my husband was operated within a week. Whilst in Singapore on those terrible sleepless nights, I found this forum which I am so grateful for. I realised that most of the long term survivors went through a similar journey, they kept fighting and never gave up until they found the right doctor(s) for them.

When we returned from Singapore, we were recommended my husband’s current doctor. But in tandem we also sought advice from another doctor in Belgium and we also sent his file to MSKCC. We didn’t want to wait and tried our best to be proactive with his treatment.

If you’re happy with his current doctor, I think it’s good to stick with one doctor. There’s no harm in seeking a second opinion — at least you know the current treatment is the right one for him. When is your husband’s next scan due?
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

Siti
Posts: 230
Joined: Thu Aug 01, 2019 10:58 am

Re: 2 years since diagnosis

Postby Siti » Fri Sep 10, 2021 4:20 am

rachelfromnyc wrote:Hi Siti,

Your husband and I were diagnosed around the same time so it's nice to see an update from you and that it's a good one! Thanks for sharing :)

Rachel


So happy to hear from you, Rachel!! How are you doing?
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

User avatar
horizon
Posts: 1636
Joined: Tue Apr 12, 2011 10:10 pm

Re: 2 years since diagnosis

Postby horizon » Fri Sep 10, 2021 7:30 am

Reading this put a smile on my face. Congrats!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

catstaff
Posts: 127
Joined: Wed Mar 03, 2021 11:37 am

Re: 2 years since diagnosis

Postby catstaff » Fri Sep 10, 2021 11:06 am

Thanks for the information, Siti. I certainly understand not logging in often, especially since your husband is NED and you can just go on with your lives. I was recently reading an old thread that petered out around 2017 because nearly everybody on it, particularly the most active, had died, and it was very depressing.

My hubby has non-resectable mets (one too close to blood vessels, one in the L5 vertebra) but I am hoping for some form of radiation to eliminate any residual from the chemo. His next scan is Monday so we'll see what the oncologist plans after this. He did well on folfiri+bev for the first 8-9 cycles but the last few have been much harder on him; he is discouraged because he's getting late side effects now (none terribly severe but definitely unpleasant) so he has few "good" days before it's time to start over. Monday will be his 12th cycle. We seem to have hit something of a wall in CEA; it is still dropping but very slowly now and it's in the 7s. The course of chemo seemed appropriate as the first attempt; it's just a question of where we go from here.

Depending on the results of the CT and our discussions, I may try to take him to a bigger cancer center in the nearest large city. I think the onc would be supportive since he has already mentioned such a possibility. The one I have in mind has a proton-beam facility.

I hesitate to say that some people survive because they fight hard. To use a mathematical expression, fighting seems to be a necessary but not sufficient condition for long-term survival. My husband is KRAS* (this seems to be the symbol they are using in the literature for mutation) which makes management harder. But I certainly plan to try.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

roadrunner
Posts: 162
Joined: Sun Jan 12, 2020 8:46 pm

Re: 2 years since diagnosis

Postby roadrunner » Fri Sep 10, 2021 4:28 pm

For what it’s worth, I don’t think it’s a productive way of thinking or talking to say that one will be more likely to survive if one “fights hard.” (Perhaps that’s why you hesitated?) That makes it sound like those who die gave up, or were weak, or were somehow at fault. I think it’s better to think about trying to make well-informed judgments, identifying and getting the best doctors, and keeping oneself as physically healthy (nutrition, exercise, supplementation as seems reasonable) and mentally healthy (trying to foster a positive outlook without blame or stress for not being sunny all the time) as possible. But understanding all the while that biology may have the last word. You seem to be doing the right things, and as long as your husband agrees, I think that means you are fighting it well.

By the way, I always thought “necessary but not sufficient” came from formal logic, but then I’m trained as a philosopher. Not sure I agree with you in any case, though—I think effective fighting is neither necessary nor sufficient. Lots of it is down to dumb luck, I’m afraid.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; multiple biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
Stable in 6/28 scan.

catstaff
Posts: 127
Joined: Wed Mar 03, 2021 11:37 am

Re: 2 years since diagnosis

Postby catstaff » Sat Sep 11, 2021 7:44 am

Roadrunner, Siti said that she and her husband had to fight just to get him treatment. They literally went halfway around the world for it. So that was the necessary part. He was then fortunate enough to respond to the chemo, which wasn't guaranteed. That's the "not sufficient" part in many cases, but at least it has been working for him for quite a while now. But not every patient is willing or _able_ to do the first part.

My husband did not respond to FOLFOX (they didn't use bev with it). I have a hypothesis for why he might respond to irenotecan (with bev probably required as an adjuvant) and radiation, but not folfox, which if correct makes me doubt that "maintenance chemo" with 5FU alone, even with bev, will be effective. But there's a chance that the small lymph-node mets have been killed, so we have two larger ones to contend with. He missed a cycle and his CEA shot back up at probably the same rate it had been increasing before he started chemo, and now we seem to be fighting something to a draw. I am anticipating the recommendation will be do some more rounds of folfiri, then 5fu-bev, and if those mets start to grow (which I regard as a near certainty) then maybe they'll consider doing something about them. I'd really prefer they be more proactive. Also, at least one met may require proton treatment since it's in a former radiation field. That's not available locally (although it wouldn't be too far to drive to get to a facility) but if you have additional mets they are likely to refuse it, even if those mets may be gone or manageable. "Not a candidate." We may be able to fib and say they are causing pain; they will often be more accommodating then.

Your signature indicates you were Stage III and they really do treat Stage IV patients differently. I suspect that many, like Siti's husband, are just written off immediately. We are fortunate that this hasn't happened to us yet. But overall the standard practice is not to try to get the patient to NED or at least close to it, but to "stable disease," which is usually a misnomer since most of the time it really means they've just slowed it down.

But you're quite right that individual circumstances have the most influence over outcome. What mutations do you have, what type of spread, etc. They just do not yet have a sufficient pharmaceutical arsenal to treat the different mutations and to prevent resistance from evolving. For a different example, my brother-in-law has serious cardiovascular disease despite a good diet and normal weight and regular exercising. That is also a lethal, incurable disease, but there are treatments and procedures and he can live decades longer. There is no such treatment for my husband, not yet. Some patients are lucky and respond to 5FU--before the other drugs like oxaliplatin and irenotecan were invented, it had pretty good success on its own overall. But many do not respond even to the best treatments available.

Also, it should not be a surprise that math and formal logic may share some terminology :-)
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

roadrunner
Posts: 162
Joined: Sun Jan 12, 2020 8:46 pm

Re: 2 years since diagnosis

Postby roadrunner » Sat Sep 11, 2021 12:02 pm

Catstaff: Yeah, I meant to include a :) with the point about math vs. formal logic. Tonal miscue on my part. Sorry :)

On the “fighting hard,” thing, I guess we’ll have to agree to disagree. It’s certainly a personal thing—some cancer patients may find it inspiring or uplifting to talk about “fighting” or “battling”—but as a cancer patient, that kind of language usually strikes me as carrying judgment with it, or an exhortation to do more, to do better, as a patient. It seems to imply a measure of control over, and responsibility for, our results that I think that we cancer patients often don’t have, no matter what we do. That was what I was trying to say. I’m not trying to pick a fight, and I understand that it’s common language, but’s that just how it strikes me as a patient.

I’ll add a link that says this better than I just did.

https://breastcancernow.org/about-us/ne ... er-matters
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; multiple biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
Stable in 6/28 scan.

catstaff
Posts: 127
Joined: Wed Mar 03, 2021 11:37 am

Re: 2 years since diagnosis

Postby catstaff » Sat Sep 11, 2021 12:16 pm

I'm speaking in terms of fighting the system, not the disease, and I believe that was the sense meant by Siti also. One can only do so much against the disease, and since it is not a sentient enemy there is no "fighting" anyway. But one can certainly end up fighting with other humans to try to get certain treatments.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-


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