Stage IV Maybe? With Mets to bone, peri, lymph?
Posted: 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.
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 ❤️
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.
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 ❤️
