Stage IV Maybe? With Mets to bone, peri, lymph?

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fork
Posts: 4
Joined: Sat Jan 09, 2021 7:01 pm

Stage IV Maybe? With Mets to bone, peri, lymph?

Postby fork » Sat Jan 09, 2021 7:26 pm

Hello everyone,

I'm Fork. My "person," 31, has been diagnosed after a lengthy battle with the healthcare system spanning about nine months. We live in a small town in Canada.

He has a history of ulcerative colitis x12 years. His "GI doc" (a regular medical internist with no background in gastroenterology but called himself a gastroenterologist) chalked his symptoms up to his medication (Simponi) no longer being effective.

In June, he had a clear scope but tested + for C diff :( he went on antibiotics. They put him on prednisone for his abdo pain and when that didn't work, they put him on a higher dose of prednisone.

In August, he switched from Simponi to Entyvio. According to his latest progress note, his "GI doc" doesn't believe he was even taking the Simponi (which is a slap in the face knowing what we know now).

In early September, they found on a CT an abdominal abscess. Around the same time, his feet started swelling. I took him into the hospital as soon as we noticed his feet and they chalked it up to prednisone and checked for clots. He didn't have any so they sent him home. Abscess was still there and he was still symptomatic, but they said since he was on day 7/10 of abx, they would leave it. :roll:

In October, he was admitted to a large city hospital. They noted that he was still + for C diff, and fixed him up. He had another clean scope, and the only thing that showed up on a chest x-ray was some bony islands... they were also unconcerned with his bilateral leg swelling. He came home.

In November, the leg swelling continued. He went to our small emerge for what he thought was an appendicitis attack but was reassured with imaging tests that nothing was wrong and sent home.

In early December, he went for his Entyvio infusion. The nurse didn't want to infuse because his heart rate was 155. She called the "GI doc" who told her to infuse and booked him in to see him the next day.

When he saw him, he noted his heart rate was high and his swelling was worse and gave him a diuretic and told him to book an ECG at his earliest convenience.

The next week, he woke up with severe ascites. Went in to emerge. They did a chest x-ray and saw some "things they didn't like on his bones." They also found bilateral lung blood clots and a DVT. They performed a paracentesis and tested some of the fluid. They did a full CT chest/Abdo/pelvis, bloodwork, bone scan, and bone marrow aspirate and sent him back to the city hospital. His CEA was 137.

The big city hospital did a repeat CT and x-ray and diagnosed him with metastatic cancer of unknown primary, likely colorectal due to history, likely mucinous, with extensive bone (sclerotic), peri, and lymph mets. His CEA, now a week later, was 200. They drained him a couple times.

He saw two oncologists. One was quite abrupt and told him chemo would kill him. Another said "why not try?" They started him on palliative FOLFIRI. He had one dose and came home.

He wound up back in the small hospital ED with uncontrollable pain and has been there since early January. He was supposed to go back to the city for the second FOLFIRI, but the oncologist who said it would kill him advised against another dose. To me, his bloodwork looks alright for someone battling cancer who just had a dose of chemo. Of concern is his albumin, low, his ALP, high. Hgb is fantastic (for him!!) Platelets are finally normal instead of sky high and his neutrophils and lymphocytes are good!

The small hospital also arranged for an oncologist to come in to basically tell him the same thing.

He's cleared of c diff though! Wooooo

I guess I'm just so shocked at how fast this is happening. I don't understand. Was there anything that could have been done to catch this sooner? I feel immense regret for not pushing further. I couldn't go in with him to appts or emerge or anything. I feel so guilty. And I feel like they're giving up on him. :(

Second opinion on Monday via Zoom meeting with a different hospital.

Thank you for reading this ❤️

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Stage IV Maybe? With Mets to bone, peri, lymph?

Postby Claudine » Sat Jan 09, 2021 10:35 pm

Hello fork, and welcome to the forum - I hope it can help you like it has so many of us here.
I’m very sorry about your partner’s situation (and yours). It is so distressing to feel that something is profoundly wrong, yet being dismissed or brushed off... I am sure being proven right was very hard, but do not blame yourself - it’s too easy in insight to think « i should have done this, pushed that »...
As you can see from my signature, my husband is also someone who did not have a primary; his cancer was diagnosed from a very painful lumbar vertebrae met. Between the biopsy and his history of Crohn’s disease, it was assigned to colorectal cancer. He was « lucky » that at the time of discovery, the cancer had not spread elsewhere (it did later though).
My question is - why did the one oncologist think that chemo would kill your partner? Was he too weak to withstand it? Chemo is indeed rough (that’s an understatement), but what is the alternative?
I’m glad you’re seeking a second opinion. Hang in there - diagnosis is a brutal shock and the first few weeks can feel surreal, but as time goes by, and a treatment plan gets in place, it does get a little better...
Take care,
Claudine
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

fork
Posts: 4
Joined: Sat Jan 09, 2021 7:01 pm

Re: Stage IV Maybe? With Mets to bone, peri, lymph?

Postby fork » Sat Jan 09, 2021 11:18 pm

Claudine wrote:Hello fork, and welcome to the forum - I hope it can help you like it has so many of us here.
I’m very sorry about your partner’s situation (and yours). It is so distressing to feel that something is profoundly wrong, yet being dismissed or brushed off... I am sure being proven right was very hard, but do not blame yourself - it’s too easy in insight to think « i should have done this, pushed that »...
As you can see from my signature, my husband is also someone who did not have a primary; his cancer was diagnosed from a very painful lumbar vertebrae met. Between the biopsy and his history of Crohn’s disease, it was assigned to colorectal cancer. He was « lucky » that at the time of discovery, the cancer had not spread elsewhere (it did later though).
My question is - why did the one oncologist think that chemo would kill your partner? Was he too weak to withstand it? Chemo is indeed rough (that’s an understatement), but what is the alternative?
I’m glad you’re seeking a second opinion. Hang in there - diagnosis is a brutal shock and the first few weeks can feel surreal, but as time goes by, and a treatment plan gets in place, it does get a little better...
Take care,
Claudine


Hi Claudine!

So sorry to read about your hubby. I guess we are in the same boat.

My partner unfortunately shared his beliefs that he had cancer with me earlier last year, but I truly believed that they did every test possible and would have caught it if it was there. It makes the guilt even worse. I held him while he cried about how it was likely cancer and he was being ignored :( Of course, as the partner, you never think it will *actually* be cancer.

It's just crazy to me. Two clear scopes in June and October, but as you say, maybe the mets were just more "noticeable."

Even so, they saw "bone islands" in October, now they see "extensive mets" bah!!!

I guess they believe because he looks like he's disappearing, he's too weak. I say give him some nutrition through the PICC and throw everything at him! He's 31 and he fought so hard for help for this response!? I'm severely disappointed in his oncologist. When we told him we wanted a second opinion, he basically laughed us off and asked what we hoped to gain from that. Ouch! He offered no other alternative. Hospice I guess.

Nothing is set in stone either. That's what's so frustrating. The reports say things like "consistent with bone mets," "consistent with peri mets" but nobody is making a firm diagnosis. They've done nothing exploratory. Just a couple x-rays, bone marrow aspirate, CTs, and a bone scan. According to one CT, it is likely mucinous adenocarcinoma. According to his discharge package, it is cancer of unknown primary. Ayeeeeeee.

Thanks for your reply!

User avatar
Green Tea
Posts: 290
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

"Where there is no oncologist"

Postby Green Tea » Sun Jan 10, 2021 1:35 am

fork wrote:... I'm severely disappointed in his oncologist. When we told him we wanted a second opinion, he basically laughed us off and asked what we hoped to gain from that. Ouch! He offered no other alternative...


"Where there is no oncologist: Manual of practical oncology in resource-limited settings"
https://www.researchgate.net/publication/236964244_Where_there_is_no_oncologist_Manual_of_practical_oncology_in_resource-limited_settings/citation/download

Eguzo, Kelechi & Camazine, Brian & Umezurike, Chisara & Jacobs, Charlotte. (2012). Where there is no oncologist: Manual of practical oncology in resource-limited settings. 51 pp.

June 2012

Publisher: Earthwide Surgical Foundation

Project: Where There is No Oncologist: Manual of Practical Oncology in Resource-Limited Settings 2nd Edition

Authors:
Kelechi Eguzo, University of Saskatchewan

Brian Camazine, Nigerian Christian Hospital

Chisara Umezurike,

Charlotte Jacobs

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Stage IV Maybe? With Mets to bone, peri, lymph?

Postby Claudine » Mon Jan 11, 2021 12:06 pm

I'm severely disappointed in his oncologist. When we told him we wanted a second opinion, he basically laughed us off and asked what we hoped to gain from that. Ouch! He offered no other alternative. Hospice I guess.


Huh! What kind of answer is that!! I remember when my husband was first diagnosed, a good friend told me, "you'll need two things in this battle - a good oncologist/medical team, and an advocate". Advocating for treatment, for support, is (unfortunately) a big part of the fight. Even though we've been happy with the oncologist so far, when DH started losing right leg control last year, he just suggested physical therapy. After a few visits, it seemed clear to me (and the PT) that it wasn't enough, so I messaged a close friend who's PA to a neurosurgeon; they looked at my husband's chart right away and scheduled him for surgery within a couple of weeks. I think that without that, he'd be paralyzed by now (he still has a much weaker right leg, but can walk and cycle).
Don't take no for an answer, keep pushing! Your partner has youth for him, that counts for a lot. Even though he's very weak, that could be addressed, so he can receive additional chemo. Hang in there XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Stage IV Maybe? With Mets to bone, peri, lymph?

Postby Claudine » Mon Jan 11, 2021 12:32 pm

The reports say things like "consistent with bone mets," "consistent with peri mets" but nobody is making a firm diagnosis. They've done nothing exploratory.


That is very surprising too. One of the first thing they did was biopsy my husband's bone met; that became even more important when they failed to find a primary tumor. because the biopsy is consistent with a CRC/GI origin, that helped target treatment. They were also able to get mutations from the biopsy - something you'll want to ask about (particularly KRAS, BRAF, and MSS vs MSI status).
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

fork
Posts: 4
Joined: Sat Jan 09, 2021 7:01 pm

Re: "Where there is no oncologist"

Postby fork » Tue Jan 12, 2021 10:04 am

Green Tea wrote:
fork wrote:... I'm severely disappointed in his oncologist. When we told him we wanted a second opinion, he basically laughed us off and asked what we hoped to gain from that. Ouch! He offered no other alternative...


"Where there is no oncologist: Manual of practical oncology in resource-limited settings"
https://www.researchgate.net/publication/236964244_Where_there_is_no_oncologist_Manual_of_practical_oncology_in_resource-limited_settings/citation/download

Eguzo, Kelechi & Camazine, Brian & Umezurike, Chisara & Jacobs, Charlotte. (2012). Where there is no oncologist: Manual of practical oncology in resource-limited settings. 51 pp.

June 2012

Publisher: Earthwide Surgical Foundation

Project: Where There is No Oncologist: Manual of Practical Oncology in Resource-Limited Settings 2nd Edition

Authors:
Kelechi Eguzo, University of Saskatchewan

Brian Camazine, Nigerian Christian Hospital

Chisara Umezurike,

Charlotte Jacobs


Thank you, Green Tea. That looks very similar to the regimen he was offered, but advised against :(

fork
Posts: 4
Joined: Sat Jan 09, 2021 7:01 pm

Re: Stage IV Maybe? With Mets to bone, peri, lymph?

Postby fork » Tue Jan 12, 2021 10:07 am

Claudine wrote:
I'm severely disappointed in his oncologist. When we told him we wanted a second opinion, he basically laughed us off and asked what we hoped to gain from that. Ouch! He offered no other alternative. Hospice I guess.


Huh! What kind of answer is that!! I remember when my husband was first diagnosed, a good friend told me, "you'll need two things in this battle - a good oncologist/medical team, and an advocate". Advocating for treatment, for support, is (unfortunately) a big part of the fight. Even though we've been happy with the oncologist so far, when DH started losing right leg control last year, he just suggested physical therapy. After a few visits, it seemed clear to me (and the PT) that it wasn't enough, so I messaged a close friend who's PA to a neurosurgeon; they looked at my husband's chart right away and scheduled him for surgery within a couple of weeks. I think that without that, he'd be paralyzed by now (he still has a much weaker right leg, but can walk and cycle).
Don't take no for an answer, keep pushing! Your partner has youth for him, that counts for a lot. Even though he's very weak, that could be addressed, so he can receive additional chemo. Hang in there XXXXX


Hi Claudine :wink:
We had our second opinion. The oncologist was very nice, but still insistent that my partner will not have much to gain from chemo and in fact, it will actually weaken him. So now he has rhe tough decision to make.

But what if he is one of those people who become stable with chemo?

You're absolutely correct about needing the proper oncologist and an advocate!

I'm so glad your hubby had the surgery and retained use of his right leg.


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