No longer NED - DEVASTATED

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

Re: No longer NED - DEVASTATED

Postby mpbser » Sat Dec 15, 2018 6:04 am

I don't know what you mean by "Was it difficult to get the appointment?"

The intake person at MSK is wonderful and very helpful. She is the only person you deal with at first until MSK receives all the records it needs, reviews them, and decides you are a candidate to see Dr. Kemeny and agrees to schedule a consultation.

The process involves gathering and sending all the records they need: original procedure report/notes e.g. colonoscopy when CC first found, all pathology reports, all operative notes, all scan reports, most recent bloodwork results, and consultation notes from most recent visit with oncologist. The one difficulty for me was the fact that I did not have a copy of the doctor visit consultation notes. I had put a records release request to central records at MGH for them to send the record over to MSK. Imaging scan requests get processed - from a different department - very quickly and I get the CDs within a week which means that they act on it within a couple days to get them in the mail. I had hoped the records department would act just as quickly but when a couple days had passed and MSK still had not received them, I was concerned. Apparently, MGH can take up to 21 days to get to the requested destination. We were very fortunate to get the appointment at MGH with his oncologist on Thursday, so I got a copy of the consultation notes from his (awesome) nurse practitioner when I was there. I emailed them over to MSK that night when we got back from Boston.

MSK reviewed his documents yesterday and did have a couple of questions, so you may get some phone calls during the process with follow-up questions. By the end of the day, they called and offered an appointment. There is no wiggle-room or negotiating the appointment. It's take it or leave it. Luckily, I happened to be in the same building as my husband at the time the call came in and I was able to rush to him to see what he wanted to do. Normally, our lives with my legal practice and his work as the COO of a large business are so busy that we usually only get to see each other for an hour every night. Being a Friday, we were lucky not to have had to wait until Monday to get back to them and who knows if that appointment would still have been available.

I hope this description gives a good idea of what it's like to get an appointment. I answered your question the best I could.
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

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

Re: No longer NED - DEVASTATED

Postby NHMike » Sat Dec 15, 2018 11:04 am

mpbser wrote:I don't know what you mean by "Was it difficult to get the appointment?"


Many of us have had a hard time getting appointments at hospitals. I would say that getting my initial appointments at Dana Farber and Brigham and Women's was a nightmare. I think that it took me two weeks to schedule the appointments - and I was really eager to start treatment. I was trying to get a hold of them as was my local oncologist. It usually went like this:

- Call and leave a message as I could never get someone on the phone
- They might call you back a few days later. If they call you back and you don't answer or are not around, then they leave a message. Then you call back and leave a message and so on.

My problem was that my mobile phone didn't work in the office back then. So I gave them my office number. But I'm not always in the office.

Once you are a patient, it's easy to make appointments.
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

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

Re: No longer NED - DEVASTATED

Postby NHMike » Sat Dec 15, 2018 11:04 am

It's great to get an appointment so quickly at this time of the year.
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

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: No longer NED - DEVASTATED

Postby heiders33 » Sat Dec 15, 2018 11:15 am

Getting my appointment at MSK was exactly as mpbser described. The intake person managed the logistics with paperwork, etc., and after that was done I got my appointments very quickly. The hardest part was communicating with the other non-MSK surgeon (her office staff was terrible!) and getting my records sent from my old hospital, which took a while. Getting into MSK for me was a breeze.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

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

Re: No longer NED - DEVASTATED

Postby mpbser » Sat Dec 15, 2018 12:13 pm

Yeah, I was fortunate to already have had copies of pretty much everything so I could send them directly myself to MSK. I keep on top of that because I know how important record-keeping is (the lawyer in me).
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

WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: No longer NED - DEVASTATED

Postby WarriorSpouse » Sat Dec 15, 2018 2:18 pm

I love the purposeful effort...Go get it done!
It is so empowering to witness others who take control of their own treatment plans and maintain control of their ship's direction. Being proactive and purposeful takes deliberate effort...I love witnessing this on this forum.
Thank you for sharing.
Wishing you guys great success at MSK in NYC:)
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

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

Re: No longer NED - DEVASTATED

Postby LPL » Sat Dec 15, 2018 6:17 pm

Mpbser,
I haven’t been active here for a while. Very sorry to see these latest news about your DH’s scan result and the way you found out - but it sounds as you will be in good hands to treat it !
It was nice to read about the routine at MSK...
Foggyocean wrote:
”you get your scans and your results in the same day! ”

DH has his next scan in Januari and it is the same routine at my husband’s hospital; the scan and doctor appointment, including the result, the same day.
Really bad that your Onc didn’t call you!
Whishing you all the best.
Kind regards /LPL
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

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: No longer NED - DEVASTATED

Postby Koreysue » Sun Dec 16, 2018 1:34 am

Yes, thanks mpbser, that answers my question.
Please keep us posted
Thinking if you guys,
Korey
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan


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