MSK patients with HAI pump - prep for Dr K meeting

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

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby mpbser » Thu Jan 17, 2019 4:10 pm

Here's a question for Dr. K patients. Why are the scan reports sometimes so delayed in getting into the patient portal for us to see?

The CT-angiogram (didn't show anything unusual, just things we already knew were there but not sure what they were) was available almost immediately.

The PET scan was available the day after one of her assistants called us to say that it was inconclusive/indeterminate, which was three business days later.

Now, we got a call on Tuesday from one of her assistants saying that the MRI from Friday (January 11) reports that at least one of the questionable spots is indeed a met and set up an appointment for a consultation with the surgeon for Monday. MRI report still isn't up there. Could it be because they meet and discuss before the final report is issued? Maybe because of all the complications with determining what the spot is, especially at this critical juncture, it is being perused by a number of people first? I think I am on the right track.... just ANXIOUS!!!

OMG... I just went to edit what I wrote here and see it's coming from a very very very anxious place! The MRI did not get done until 4:30 last Friday. It has been nearly 4 business days. But if it isn't online by tomorrow I think I'm just going to go a little insane.
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: MSK patients with HAI pump - prep for Dr K meeting

Postby LPL » Thu Jan 17, 2019 4:40 pm

mpbser,
I have saved a quote from CRguy..
BREATH ....... repeat as needed

This is what I will be doing until our doctor appointment on monday when we will be getting the PET result. (OK I might be thinking.. making a list of questions for different possible scenarios!)
Please try to relax. Will be thinking about you on Monday.
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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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby juliej » Thu Jan 17, 2019 4:50 pm

mpbser wrote:Here's a question for Dr. K patients. Why are the scan reports sometimes so delayed in getting into the patient portal for us to see?

The CT-angiogram (didn't show anything unusual, just things we already knew were there but not sure what they were) was available almost immediately.

The PET scan was available the day after one of her assistants called us to say that it was inconclusive/indeterminate, which was three business days later.

Now, we got a call on Tuesday from one of her assistants saying that the MRI from Friday (January 11) reports that at least one of the questionable spots is indeed a met and set up an appointment for a consultation with the surgeon for Monday. MRI report still isn't up there. Could it be because they meet and discuss before the final report is issued? Maybe because of all the complications with determining what the spot is, especially at this critical juncture, it is being perused by a number of people first? I think I am on the right track.... just ANXIOUS!!!

OMG... I just went to edit what I wrote here and see it's coming from a very very very anxious place! The MRI did not get done until 4:30 last Friday. It has been nearly 4 business days. But if it isn't online by tomorrow I think I'm just going to go a little insane.

You're correct. Often times the report isn't posted online if it's still being discussed by the team and hasn't been officially discussed with the patient. If there is something inconclusive Dr. K will pull in additional experts (I'm sure she has them on speed dial!) for a consultation about an MRI, CT, or PET report. She also looks over every report in detail herself and compares all the data from the three types of scans. Then the team reassembles with the new info and has a round-table discussion of your case.

I've had her disagree with the radiologists/technologist's report about something that showed up on my scan. One hundred percent of the times she has been right, which isn't to say she is incapable of being wrong. Also, the docs at MSK are research scientists first, docs second, so complex cases can trigger ad-hoc meetings that run way past regular office hours. You husband's scans are probably being evaluated more than you can imagine.

Just be glad his case is being discussed in detail and no one is making a snap judgement on what it means. And try to distract yourself with something (movie? friends? a martini? :D ) until next Monday!

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby mpbser » Thu Jan 17, 2019 6:25 pm

Yeah, I have no doubt that we are in good hands. I just like to have as much information as possible. I cannot imagine meeting with the surgeon on Monday without seeing the MRI report first. There will be no way to be provided all the details of the report at the consultation. How is my husband to provide informed consent to the process that is suggested without full information?
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: MSK patients with HAI pump - prep for Dr K meeting

Postby mpbser » Thu Jan 17, 2019 6:27 pm

PS A martini sounds damn good right now! However, I stopped drinking as a New Year's resolution for a "six month cleanse." It's been excruciatingly difficult to abstain!
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: MSK patients with HAI pump - prep for Dr K meeting

Postby ginabeewell » Thu Jan 17, 2019 7:14 pm

mpbser wrote:PS A martini sounds damn good right now! However, I stopped drinking as a New Year's resolution for a "six month cleanse." It's been excruciatingly difficult to abstain!


Wow, that is an aggressive goal you set for yourself at this point in your life. As my therapist would tell me, "Now is the time to be gentle with yourself." Just make sure you have ways to nurture yourself through this journey, and a glass of wine every now and again seems like it might be a worthy compromise to your cleanse.

Saying that as someone who is panicking when she heard "no alcohol with the HAI pump." But I have a summer vacation planned to Italy! Wah!
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: MSK patients with HAI pump - prep for Dr K meeting

Postby mpbser » Fri Jan 18, 2019 3:09 pm

Thanks for the heads up about no alcohol with the the pump. Sounds like common sense but you know....
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: MSK patients with HAI pump - prep for Dr K meeting

Postby Pyro » Mon Jan 21, 2019 11:36 am

Del
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!


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