Anyone pass out after abdominal cramping??? ER time

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mpbser
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Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby mpbser » Thu May 16, 2019 1:53 pm

It's a shitstorm that seems to have no end. At least that is how it feels.

What had actually happened was that the catheter dislodged from my husband’s artery. (We had been emphatically assured that that was a rare event by Dr. D'Angelica. Ugh.) He is so very lucky to be alive as when this happens people can bleed out and die. The interventional radiologists went in through his femoral artery and patched it up. Amazing that they can get into the hepatic artery and do what would otherwise be surgery. They drained the pump of chemo and left it empty during the procedure so the pump died. They turned it off yesterday so it doesn't beep. There is no resurrecting it, nor would we want it to be! His catheter is now free floating out from the pump around his small intestines. GREAT!

His hemoglobin bounced a bit after his procedure, from MSK arrival value of 7.9 (to high of 9.2) but then dropped to 7.7 and then up to 7.8 yesterday night. I was frantic to discover this as it did not make sense to me and called to see if I could get some information that would help me understand. The nurse said that they would keep testing and should it get to their threshold of 7, he would get a transfusion. This still didn't reassure me because it sounded like treating a symptom instead of a cause.

Dr. Kemeny believed that he could be experiencing hemodilution. They were supposed to lower the saline IV drip rate to try to counteract this but according to my husband, they did this for a short while, then put it back to where it was. He was confused as this was all happening in the middle of the night. He was/is completely exhausted so I don't really have a good picture of what went on.

After a night of very little sleep, I checked the portal and saw that it was now 7.1. I got a call this morning from one of Dr. D'Angelica's fellows who explained that this could be a natural variation given the circumstances. (Or could maybe not be!) What they do at this point is give a unit of blood and see how his hemoglobin and hematocrit responds. If it rebounds to 7.9 or above, they will be cautiously happy and will watch to make sure it steadies. However, if it only jumps to 7.3, stays the same, or drops, they will be concerned. He said that they would then do another CT with contrast to see if they can see what is going on.

I also found out this morning from a nurse that the interventional radiologist embolized his pancreas which was bleeding. (The radiologist DID NOT SAY A FUCKING THING ABOUT THIS AT THE DEBRIEF MEETING WE HAD AFTER THE PROCEDURE. Nor did Dr. D'Angelica when I saw him yesterday for his explanation of what was going on.)

Ok, so getting back to the conversation I had a couple of hours ago with the fellow, I'm always concerned about CTs not getting an accurate picture of what is going on with my husband, so I wasn't terrifically reassured. This is especially because what I really think has happened, despite both Dr. D'Angelica and Dr. Kemeny's attempts yesterday to assure me that chemo leakage could not have caused significant damage (including Dr. D'Angelica saying that FUDR is administered into the abdominal cavity as a chemo treatment), is that there was extra-hepatic perfusion into those liver lymph nodes that the post-implantation flow scan test radiologist said was present. (Dr. Kemeny overrode that opinion. Dr. D'Angelica deferred to her on this and in that conversation said that liver lymph nodes are not considered "blood vessels" when I asked him about the paper he and Dr. Kemeny authored on the subject of extra-hepatic perfusion.) I suspect that there was indeed leakage as his Hgb started to decline as of April 1st, the date he started his first round of FUDR. I think the FUDR entered those two lymph nodes and into his blood stream. The FUDR corroded the hepatic artery and weakened the connection to the point where it gave way on Sunday night when all this started. It probably also leaked into the pancreas.

Yeah, shitstorm is a nice way of putting this living hell.

There is going to be a huge price to pay.... and I am taking no prisoners.
Last edited by mpbser on Mon May 27, 2019 6:07 am, edited 2 times in total.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Anyone pass out after abdominal cramping??? ER time

Postby LPL » Thu May 16, 2019 2:23 pm

Oh my world :shock: :cry: I am so sorry to hear this news!
Will they now (have to) remove the HAI pump that you say has ”died”? If so why wasn’t it removed during the procedures? Please forgive me if that is a stupid question - it’s just that I hear that you are worried about ’something floting around his small intestines’. Both of you must be totally exhausted!!
I’m going to try my best to send strengthening vibes and I hope you will hear good news soon!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby ginabeewell » Thu May 16, 2019 2:48 pm

This sounds like such a terrible ordeal.

In reading this, I recall that from the get-go you have been concerned about complications, particularly with the new pump / old catheter not being proven. And now here you are having experienced exactly what you were worried about.

I hope you get to better clarity regarding what happened, and that the doctors are successfully able to continue to resolve the current issues and get your husband healed.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby mpbser » Fri May 17, 2019 5:18 am

Hi Gina,

Indeed I had many a concern, not only about the pump--catheter being investigatory but about the pump generally in terms of the risks of HAI FUDR. If I am correct that the particular Codman catheter used in this adaptation is the same model that MSK has used for many years with the old Codman pump, then it turns out that the fact that my husband's pump was Medtronic did not make a difference in what caused the problem to happen. The "problem" I am still trying to analyze, but one thing is for certain, the artery eroded to the point where it gave way to the implanted (delivery) end of the catheter where it was attached to the liver and bleeding is a known side effect of FUDR.

Hi Lena,

So, because the catheter is no longer connected to anything on the liver end, it is "free floating" in a sense that it is only tethered on one end right now: at the pump end where it comes out of the pump. I do not feel this is safe to leave like this.

It was not removed because he has not had surgery to deal with any of this. The only procedure he has had this week was the interventional radiology stent placement and embolization of the pancreas. That is done via the arterial system that the interventional radiologist enters with a catheter they place through the femoral artery.
Last edited by mpbser on Fri May 24, 2019 7:03 am, edited 1 time in total.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Anyone pass out after abdominal cramping??? ER time

Postby Pyro » Fri May 17, 2019 12:21 pm

It’s terrible you both have to go through this, this cancer business is tough. I’ve often thought the treatment can be worse than the disease, and you’re seeing it upfront and personal. I remember signing a bunch of documents before my surgeries, possible side effects of surgery, some of them seemed impossible but yet they happened. He’ll get through it!
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby NHMike » Fri May 17, 2019 3:33 pm

This has been a really rough journey for both of you. I hope that they can fix the leak issue.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby mpbser » Mon May 20, 2019 6:24 am

I started a new thread titled "HAI pump nightmare" that has received not one comment. Interesting.

So, there is far too much to type if I was to provide an update on this forum now. I don't have the time at the moment as there has been so many events and developments.

The one major concern I am is the answer that I received to my question about following up to see the extent of the damage that has happened or could still be going on. In short, I was blown off with one exception. After speaking with Dr. Kemeny on Friday about my concerns that they could be being discharging him too early (long story, will fill in a far longer narrative later when I compile complete documentation), she said she wanted to see him Monday (today).

When I read this yesterday, I nearly lost my shit (going from NED to this within 6 weeks is just overwhelming....and I know there is a possibility that all *could* be hemorrhagic, but I am disconcerted by the fact that there even is the possibility of carcinamotosis in what was being seen 17 hours after the catheter gave way and became completely dislodged from the gastroduodenal artery):

[RELEVANT] FINDINGS:
There are multiple masses within the abdomen. One is 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.

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.

There are 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.

There is irregular thickening along the anterior pararenal fascia and within the mesenteric fat which could represent additional hemorrhage or possibly carcinomatosis. It would be helpful to compare to older studies however none of the old studies from this institution (most recent CT chest 11/5/2018) show any of these abnormalities.

LIVER: The liver is mildly heterogeneous. There are clusters of metallic densities within the RIGHT lobe and within the LEFT lobe which are presumably related to tumor therapy. There is a 3 cm hypodense rounded mass located at the junction of the RIGHT and LEFT lobes which does not have any associated metallic clips.

IMPRESSION:
1. There is moderate free intraperitoneal high density fluid seen in the RIGHT abdomen and within the pelvis consistent with hemoperitoneum.
2. There are multiple peritoneal masses located anterior and also inferior to the stomach and adjacent to the porta hepatis which are likely metastatic lesions. A catheter traverses one of these lesions and passes close to several of the other lesions. These presumably represent tumor however heterogeneous high density also suggest at least a portion of each mass could represent hemorrhage and likely is the source of the free intraperitoneal hemorrhage.
3. There is a component of retroperitoneal hemorrhage tracking along the anterior pararenal fascia which is also likely from the same source.
4. There are metallic clips within the liver in the RIGHT and LEFT lobe which are presumably related to treated metastases. There is one hypodense mass located between the RIGHT and LEFT lobes which likely
represents an additional metastatic lesion
5. Small LEFT pleural effusion.
6. It would be helpful to obtain copies of previous CT scans or the reports of previous scans to help determine how much of these peritoneal masses are likely tumor and how much hematoma. A CT with intravenous contrast may also be helpful in further characterizing these abnormalities.

So, the above-referenced helical axial CT was done without contrast at our local hospital at 9:00 pm Monday night, which I briefly mentioned above was 17 hours after the time it appears that the catheter finally gave way from the artery (1:30 am or so, which was following the 11:00 pm to 1:00 am severe cramping that alerted us that something was wrong). I have not yet seen the CT with contrast that was done at Albany Medical Center at around 7:00 am Tuesday morning. I am praying that it ruled out carcinomatosis in ALL these very worrisome spots.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby mpbser » Mon May 20, 2019 6:35 am

I have been reading about aneurysms and pseudo-aneurysms (which is how I would characterize what happened) of the gastroduodenal artery and apparently the mortality rate is 40%.

He is so very lucky to be alive. My logical side has a very hard time believing in God or a Higher Power, whatever one wants to call it, but it's times like this that restore my faith.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Re: Anyone pass out after abdominal cramping??? ER time

Postby radnyc » Mon May 20, 2019 8:05 am

The Albany scan is not what you need to be looking at. It has to be an MSK scan for proper analysis.
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April 2011
HAI Pump removed Dec 2015

User avatar
ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby ginabeewell » Mon May 20, 2019 8:50 am

mpbser wrote:I started a new thread titled "HAI pump nightmare" that has received not one comment. Interesting.



My sense is that almost all of the active members here were tuned into your original thread and commented here vs there. I did read it but thought better to keep the dialogue on this one. Hopefully you aren’t ascribing intent where none exists. I think we are collectively very sorry this happened to your husband and all pulling for his continued healing.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby NHMike » Mon May 20, 2019 8:56 am

ginabeewell wrote:
mpbser wrote:I started a new thread titled "HAI pump nightmare" that has received not one comment. Interesting.



My sense is that almost all of the active members here were tuned into your original thread and commented here vs there. I did read it but thought better to keep the dialogue on this one. Hopefully you aren’t ascribing intent where none exists. I think we are collectively very sorry this happened to your husband and all pulling for his continued healing.


That's my feeling too.

I've only read success stories on the HAI pump (in that the extended life or improved things greatly).
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby mpbser » Mon May 20, 2019 9:04 am

radnyc,

Yeah, well, the only scans there are that I am aware of between the time of the catheter dislodge and now are those from our local hospital in Vermont and Albany Med. I do not know what scans may have been done when he was in interventional radiology Tuesday night at MSK. I do not believe that they keep real time scans of what they perform but I am not sure. So far, MSK has blown off my multiple requests for scans to see what could be still in there and going on. Obviously, I will find out more from Dr. Kemeny never that might be. (Freudian slip..... whenever that might be is what I meant to type)

gina,

Intent? Haven't given it consideration but that's an interesting idea.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby ginabeewell » Mon May 20, 2019 9:23 am

mpbser wrote:gina,

Intent? Haven't given it consideration but that's an interesting idea.


Maybe I misunderstood your statement that you found it “interesting” that nobody commented. It seemed you were interpreting that as a sign that people didn’t care, and I wanted to say I don’t think that is the case.

I’m at MSK today for treatment if you would like to connect live. I’m in jeans and a white tunic top with a navy print and a (fake) ponytail, hanging on 5 waiting for my infusion to start.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

Milk Tea
Posts: 29
Joined: Wed Feb 13, 2019 1:14 pm

Re: Anyone pass out after abdominal cramping??? ER time

Postby Milk Tea » Mon May 20, 2019 10:36 am

Mpbser,
I am so sorry this happened to your husband. Please know that I read all your update posts and am thinking of you and rooting for you and your husband. {{ Hugs }}
Wife to DH
09/2016: Dx at 50, CC Ascending colon, 10+ liver Mets
KRAS-Mut G12V, MSS, CEA 8
09/2016: Nearly blocked, Emergency colon surgery (LAR)
FOLFOXIRI+Avastin: 6 before and 6 after liver resection
01/2017: Liver resection, open, both lobes, 40% total liver cut, tumors either cut out or microwave ablation burn, all tumors are out
02/2017-01/2019 : Clean CT every 3-4 months, CEA between 2-3
06/2017-Present: Maintenance Chemo: Xeloda + Avastin

Chimney
Posts: 22
Joined: Sun Nov 08, 2015 10:38 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby Chimney » Mon May 20, 2019 11:00 am

I’m so sorry this is happening to your Husband. You must be frantic with worry. I have no advice, just commiseration.

(Btw I read both your HAI pump update and this thread and I thought, as I’m sure many others did, to keep the conversation on this thread since it seemed to be where you were posting updates. )
Dad, diagnosed CC age 70
T3n1m0 5cm tumor in sigmoid
Resection Mar 2014, fever, endocarditis of aortic heart valve. 2 months of IV antibiotics
5FU continuous infusion 6months
Post chemo scan clear Feb 2015, port removed
2016- clear scan
2017- clear scan
2018 - clear scan, serious prostate infection, aortic valve replacement via TAVI
April 2019 - clear scan, but with mild ascites around liver. Scan again in 6 months
Oct 2019 - clear scan, ascites reduced to negligible


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