Just got diagnosed - advice appreciated

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annieliz
Posts: 52
Joined: Fri Jul 26, 2019 5:13 pm

Re: Just got diagnosed - advice appreciated

Postby annieliz » Wed Jun 03, 2020 7:55 am

If you live in the NYC area I highly recommend MSK. I am very happy with the treatment I am receiving there. My oncologist is Dr. Geoffrey Ku.
Hope this helps a little. I am happy to answer any other questions you may have.

Anne
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19-1.9, 12/6/19-2.3, 2/28/20-1.7
8/16/19 - 11/23/19 FOLFOX - 8 rounds
10/9 flex sig ~30% shrinkage 11/27/19-a bit more shrinkage
Neulasta 9/29/19, 10/27/19, 11/24/19
25 days Xeloda and radiation 12/17/2019 - 1/22/20
Robotic LAR 4/14/20 - clear margins - 0/15 nodes
Temp ileostomy

Mugenabe
Posts: 16
Joined: Sat May 30, 2020 6:38 am

Re: Just got diagnosed - advice appreciated

Postby Mugenabe » Wed Jun 03, 2020 3:53 pm

annieliz wrote:If you live in the NYC area I highly recommend MSK. I am very happy with the treatment I am receiving there. My oncologist is Dr. Geoffrey Ku.
Hope this helps a little. I am happy to answer any other questions you may have.

Anne


Thanks Anne. MSK just called back today. I was able to get an appointment next Thursday. It was supposed to be further out but I asked if anything way I can meet w/ the Dr that I was looking to see. They reached out to the Dr to see if he can squeeze me in somewhere and got me in next week! The initial experience so far w/ MSK has been great. Trying to set up an appointment, getting all the paperwork done, follow ups, etc. Customer service 10 out of 10. I hope the rest of the experience stays the same. Once I get more information on what's next, I'll let you know if I have questions.

Cancer is definitely teaching me to have patience. I need to learn how to manage all the waiting since I was told waiting times gets even worse. I feel like every pain, headache, or abnormal feeling I experience, is the cancer is spreading. I know there's not much I can do about it but trying to stay calm and positive is tough...

Actually, I just thought of a question. Have they given you issues meeting w/ a significant other? I've had my wife w/ me for most of the appointments I've had and I've been reading where some places are restricting being accompanied by someone (because of Covid). Has MSK allowed you to have someone w/ you during appointments?
5/13/20 colonoscopy, CT Scan - 5cm tumor found in sigmoid colon, no evidence in other organs, confirmed cancer
5/21/20 colectomy (partial resection) - waiting for staging
6/2/20 Pathology results 7/25 nodes positive Stage 3C T4aN2b
6/25/20 CAPOX 4 rounds CEA 2.5

annieliz
Posts: 52
Joined: Fri Jul 26, 2019 5:13 pm

Re: Just got diagnosed - advice appreciated

Postby annieliz » Wed Jun 03, 2020 5:09 pm

Yes, I agree about the great customer service. I was always able to get most appointments scheduled at my convenience. Just yesterday morning I was worried about the skin around my stoma so I emailed photos to the surgeon's office and the office manager forwarded the email to the appropriate people and by 10:30 a.m. I had an appointment to get taken care of at one of their satellite facilities closer to my home than the NYC office!

I don't think you will be able to have anyone accompany you to the oncologist visit, but you can bring a device so that you can video conference with your wife during the appointment. The last time I was at the 53rd Street building, nobody but patients and staff were allowed in the building. Their hospital policy is different; they have recently changed their visitor policy for hospital patients and are now allowing one visitor, so it's possible they may change their policy for visitors in other offices. I would call a couple of days before your appointment and they will tell you the latest policy. They also post visitor policy updates, so you may want to check that, too.
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19-1.9, 12/6/19-2.3, 2/28/20-1.7
8/16/19 - 11/23/19 FOLFOX - 8 rounds
10/9 flex sig ~30% shrinkage 11/27/19-a bit more shrinkage
Neulasta 9/29/19, 10/27/19, 11/24/19
25 days Xeloda and radiation 12/17/2019 - 1/22/20
Robotic LAR 4/14/20 - clear margins - 0/15 nodes
Temp ileostomy

Basil
Posts: 270
Joined: Thu Mar 16, 2017 12:33 pm

Re: Just got diagnosed - advice appreciated

Postby Basil » Thu Jun 04, 2020 9:22 pm

I don’t have any specific advice (other than get Ativan in your infusion; they asked if I wanted it and I accepted) - fusions were easy.
40 y/o male, kids 8&11
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear

boxhill
Posts: 591
Joined: Fri Apr 06, 2018 11:40 am

Re: Just got diagnosed - advice appreciated

Postby boxhill » Sat Jun 06, 2020 11:38 am

I'm glad you got your pathology results, but sorry that they weren't as good as you hoped.

I think you have a great mindset. We can all identify with what you've been feeling. :) Uncertainty is one's constant companion with cancer, and I found that the trick for me is to become as informed as possible without freaking out about things that might never apply to me.

BTW, check your pathology report and see if it has the basic genetic results: KRAS/BRAF/MSS or MSI. Try to find out if CEA was considered a marker for you. ( If it isn't, one less thing to obsess about. :) ) If it's not on your portal, ask your doctor about it.

You've got this. And we and other CRC veterans are here to help you.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

Mugenabe
Posts: 16
Joined: Sat May 30, 2020 6:38 am

Re: Just got diagnosed - advice appreciated

Postby Mugenabe » Fri Jun 12, 2020 5:41 am

Hi everyone, just an update. I spoke to my oncologist today and it looks like I’ll be on CAPOX. He said that there are new studies that show 3 months is sufficient and do not need to go on the usual 6 months treatment. He wants me to get started next week. I’ll be doing bloodwork and a chest scan also before I start. Hoping for good results!!
5/13/20 colonoscopy, CT Scan - 5cm tumor found in sigmoid colon, no evidence in other organs, confirmed cancer
5/21/20 colectomy (partial resection) - waiting for staging
6/2/20 Pathology results 7/25 nodes positive Stage 3C T4aN2b
6/25/20 CAPOX 4 rounds CEA 2.5

Claudine
Posts: 410
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Just got diagnosed - advice appreciated

Postby Claudine » Fri Jun 12, 2020 10:54 am

Fingers crossed! Doing 3 months instead of 6 will also reduce your chances of peripheral neuropathy.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

DarknessEmbraced
Posts: 3489
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Just got diagnosed - advice appreciated

Postby DarknessEmbraced » Sat Jun 13, 2020 11:50 am

I hope it will be 3 months instead of 6 months and that your chemo will go well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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