The Colon Club

We just got a call from Dr. Kemeny who apparently had forgotten that she had told me on Friday that she wanted to see my husband today. I had uploaded the CT w/o contrast report to her office this morning expressing the concerns that I expressed here. Thankfully, she called us in regard to this and said that she was unable to view the Albany Med Center scan (CT WITH contrast) because the MSK urgent care (their equivalent of an ER) did not have the CD that was sent down with my husband in the ambulance last Tuesday. I am hoping that MSK's radiology department has it and is doing their own review, which they do whenever they receive a "foreign" scan. Their own radiologists will analyze the images and provide their own report. In the meantime, Dr. Kemeny said she wanted bloodwork. I told her we had already had an appointment today at MSK-Westchester at 3:45 for labs and then treatment anyway so it makes sense for us to go in this afternoon for that. She agreed. She also said that she would like to see my husband's body absorb the blood more and do a repeat scan at MSK. Makes total sense. We leave in about an hour for MSK-Westchester. Hoping his hemoglobin is not only steady but improved.

gina, I would have loved to meet you as well. Alas, it looks like we won't be there today.

Are you doing okay? Is your husband feeling shitty or is he hanging in there? Wtf are all the masses showing up on CT? That would scare the crap out of me!

We are doing well, especially after going to MSK-Westchester yesterday afternoon for a blood draw that showed excellent progress with his hemoglobin. It is up to 10.3!!! That is higher than Sunday last week when first in the ER in Vermont. With relief from that news, I got a great night's sleep last night and my husband is still sleeping as it's only 5:49 am.

As far as all those masses seen on the CT w/o contrast, we got a call from Dr. Kemeny yesterday around 2pm and she apparently had forgotten that she had told me on Friday that she wanted to see my husband today. I had uploaded the CT w/o contrast report to her office yesterday morning expressing the concerns that I expressed here in this thread. Thankfully, she called us in regard to this but said that she was unable to view the Albany Med Center scan (CT WITH contrast) because the MSK urgent care (their equivalent of an ER) did not have the CD that was sent down with my husband in the ambulance last Tuesday. She said they had "lost" it, but I am hoping that MSK's radiology department has it and is doing their own review, which they do whenever they receive a "foreign" scan. Their own radiologists will analyze the images and provide their own report. In the meantime, Dr. Kemeny said she wanted bloodwork. I told her we had already had an appointment at MSK-Westchester at 3:45 for labs and then treatment anyway so it made sense for us to go to that scheduled appointment. She agreed. She also said that she would like to see my husband's body absorb the blood more and do a repeat scan (CT WITH contrast) at MSK to get a better read when his body is more equalized. Makes total sense.

The report from the interventional radiology procedure last Tuesday at MSK has finally arrived in the portal. Interestingly there is no mention of the embolization that was performed on the pancreas. At least that is a procedure that one of his nurse's mentioned to me that was done when I called the 18th floor early Thursday morning and pancreatic bleeding was confirmed by Dr. Kemeny when she and I spoke on the phone Friday. She provided an explanation for the pain being pancreatic bleeding (he was displaying pain in his back area when I saw him at Albany Med) and an explanation of how/why it occurred, although in my frenzy I didn't catch it. She also mentioned that she was testing his lipase level to survey the pancreas. I assume it's a biomarker for pancreatic damage. I wonder if that will be a separate report. I am so confused and have received such sketchy information from his medical providers.

mpbser wrote:We are doing well, especially after going to MSK-Westchester yesterday afternoon for a blood draw that showed excellent progress with his hemoglobin. It is up to over 10.3!!! That is higher than Sunday last week when first in the ER in Vermont. With relief from that news, I got a great night's sleep last night and my husband is still sleeping as it's only 5:49 am.

As far as all those masses seen on the CT w/o contrast, we got a call from Dr. Kemeny yesterday around 2pm and she apparently had forgotten that she had told me on Friday that she wanted to see my husband today. I had uploaded the CT w/o contrast report to her office yesterday morning expressing the concerns that I expressed here in this thread. Thankfully, she called us in regard to this but said that she was unable to view the Albany Med Center scan (CT WITH contrast) because the MSK urgent care (their equivalent of an ER) did not have the CD that was sent down with my husband in the ambulance last Tuesday. She said they had "lost" it, but I am hoping that MSK's radiology department has it and is doing their own review, which they do whenever they receive a "foreign" scan. Their own radiologists will analyze the images and provide their own report. In the meantime, Dr. Kemeny said she wanted bloodwork. I told her we had already had an appointment at MSK-Westchester at 3:45 for labs and then treatment anyway so it made sense for us to go to that scheduled appointment. She agreed. She also said that she would like to see my husband's body absorb the blood more and do a repeat scan (CT WITH contrast) at MSK to get a better read when his body is more equalized. Makes total sense.

This sounds positive though the masses are still a big concern.

Yeah, but from what I understand given advice from a couple of people in the medical profession, a CT w/o contrast for a bleed is essentially useless. Of course I am not going to be satisfied until we get a clearer picture.

Going by the only report we currently have, there are four areas of concern [my notes are in brackets and italics]:

1) mass located in the midabdomen anteriorly within the mesentery located just below the stomach. This mass measures approximately 13 cm longitudinal and 5 cm short axis diameter on coronal images by approximately 7 cm in AP diameter. This has some heterogeneous internal high density and some areas of low-density and could represent tumor or possibly a combination of tumor and hematoma. This large focus may have a mixed appearance of carcinomatosis because there could be necrotized tissue in there from possible chemo leakage of upwards to 21 days (14 days from cycle 1 and 7 days of cycle 2 when this disaster began). Upon review of his labs, it is possible that there was a miniscule leakage at the catheter-arterial juncture from the get-go as his hemoglobin never bounced back to pre-surgery/implant levels. In fact, he was borderline anemic between March 7th surgery and when he started chemo April 1st. In fact, the values are quite remarkable in hindsight as they vacillated between just under and just above the lower threshold during that period.

2) There is a second heterogeneous mass located in the upper abdomen anterior to the body of the stomach. This measures approximately 7 cm in diameter and is of similar density with areas of high density and interspersed lower density. There is a catheter traversing through this mass which connects to an electronic device in the anterior abdominal/lower chest wall. Same analysis as above applies.

3) several additional similar masses seen adjacent to the duodenal bulb and porta hepatis measuring 4 cm and 5 cm in diameter respectively. There are numerous surgical clips adjacent to the porta hepatis mass and the catheter tracks adjacent to this. This is quite interesting because this is in close proximity to the two lymph nodes that the post-implantation flow scan showed extra-hepatic leakage. If there was leakage, which could very well be a possibility, then that would explain the heterogenous nature of these cited masses.

4) irregular thickening along the anterior pararenal fascia and within the mesenteric fat which could represent additional hemorrhage or possibly carcinomatosis. At the time of this scan, my husband's pain started to ratchet up. From what I understand, this pain was related to pancreatic bleeding. This area of thickening could be simply additional hemorrhage as it is in the area of the pancreas which I think is behind the liver in the middle of the kidneys. I need to investigate this anatomical region for a clearer understanding.

I've been thinking of you and your husband today. I hope you are making progress on getting answers to your questions, or at least moving closer to getting that information. I can't imagine what all of this has been like for both of you. It sounds like you have a firm grasp of what you need to know, at least.

Thanks, Jannine. We got home yesterday. My husband thankfully can work out of home this week and is going to be sleeping as much as he possibly needs so he fully recovers. He had not had a good full night's sleep in over a week.

I have been following another case of catheter dislodge that is currently going on at MSK with another patient of Dr. DA's. His pump is implanted in the same place as my husband's. Last week, after four FUDR treatments, he became symptomatic of bleeding just like my husband. By endoscopy, it was discovered that the catheter was causing an ulcer in his stomach because the catheter had dislodged from the pump end. He happened to already be scheduled for liver surgery yesterday as he currently has a number of liver mets. When they went in, it was discovered that the loose catheter was also causing a bleed in the back wall of the duodenum. They removed the pump and also placed a stent in his hepatic artery (just like my husband) as a precautionary measure to avoid a pseudo-aneurysm (like my husband had).

I had messaged Dr. K and DA's teams through the portal on May 16th, while my husband was in the MSK ICU, after Dr. DA was talking about leaving the pump in there and my husband starting chemo in "two weeks": "Dead pumps left in bodies are almost always connected to the artery - I don’t like the idea of the catheter floating around in there where his small intestines are. That just sounds too risky."

We were told that my husband has a follow-up appointment with Dr. DA on Monday, the 27th, which is noted on his discharge paperwork. We got a call early yesterday morning from one of his nurses who said that they wanted repeat bloodwork this week. We informed her that it had already been done, per Dr. K, and results are in the portal. The nurse was going to call us back but didn't yet.

In the meantime, I am planning on calling a liver surgeon in Albany we consulted with when choosing between him, a local surgeon who operated on a friend of ours, and MGH a couple years ago for my husband's first liver surgery. If MSK is going to take too long for our liking to get him in for surgery to remove the pump and catheter, I want a back up plan.

I am shocked that he continues to work through this!

Wishing a speedy recovery and take care of yourself and family.

Perhaps consider taking time off work?

Darn it. The Albany surgeon's office has informed me that because the surgery was not done by their surgeons, they cannot do surgery on my husband unless he is in the ER.

Great. So in order to get my husband prompt care, in the event that MSK takes too long to follow-up, my husband has to be again in a life-threatening condition. What a great medical system we have.

I am so glad your husband has stabilized. Can they do a PET Scan to see if those other lesions are in fact tumors.

I would think that a PET scan would be in order. That's what our surgeon friend (formerly chair of a particular dept at Mt Sinai) said should be done. Haven't heard a word about it from MSK yet, though.

My connection at the National Institute of Health is very curious about all this.

https://clinicaltrials.gov/ct2/show/NCT ... cer&rank=8

Primary Outcome Measures :
1. number of patients requiring stent replacements [ Time Frame: 1 year ]
2. % frequency liver toxicity

I never caught this when I first saw this study info. Stent replacements??? We were not advised of the possible need for any stent at all, ever.

UPDATE: now that I think about it, that must be a reference to biliary stents

After looking at other similar studies and comparing them to this one, my NIH connection says that Dr. Kemeny low-balled the outcome measurements.

So where do you guys go from here? What's the next step?