Finally consults in the works

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beach sunrise
Posts: 250
Joined: Thu Mar 05, 2020 7:14 pm

Finally consults in the works

Postby beach sunrise » Thu Sep 17, 2020 4:46 pm

Hi all, navigating consultations with oncologists has been like driving a spaghetti junction interchange. So confusing and hard during covid. But got two consults nailed down. So I feel like I am making progress with more discussions and information to go forward. Ya, its been a pretty good day.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Lee
Posts: 6134
Joined: Sun Apr 16, 2006 4:09 pm

Re: Finally consults in the works

Postby Lee » Mon Sep 21, 2020 7:03 pm

Sorry no one has responded sooner, sometimes threads get buried. Anyway glad you got 2 consults nailed down. Good luck with both. Let us know. Yes it is a whole new world out there now. I hope & pray they get a vaccine soon.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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beach sunrise
Posts: 250
Joined: Thu Mar 05, 2020 7:14 pm

Re: Finally consults in the works

Postby beach sunrise » Tue Sep 22, 2020 8:40 pm

Thank you, Lee!
I'm wondering if anyone here has had a consult or is a patient of Dr. Raymond Chang (Meridian Medical Group). I have a consult with him and just wondering if anyone has any tips on how he is.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

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beach sunrise
Posts: 250
Joined: Thu Mar 05, 2020 7:14 pm

Re: Finally consults in the works

Postby beach sunrise » Thu Sep 24, 2020 7:01 pm

Takeaway from consult today was onc is not for maintenance like ADAPT or chronomodulation type. He said they are interesting in theory.
On subject of immune system his thought is your immune system is what it is. I could try to build it but biologically I own it for what it is. So, not a fan of supplements.
His thoughts on cancer treatment as a whole was its unknowns and unfortunately patients are the ones who suffer.
He felt best approach was to do nothing at all and call back when cancer comes back. But had no problem with continuing xeloda for a while if that was my decision but he would never recommend it.
It was an interesting conversation.
On to the next!
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Vana3
Posts: 42
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: Finally consults in the works

Postby Vana3 » Thu Sep 24, 2020 10:15 pm

Hi beach sunrise,

Glad to hear your first consult went well. I have had several opinions and it has surprised me sometimes how different the doctors can be.
Wishing you a good 2nd consult.

Kind Regards,
Vana
Dx 36 yr, F, 7/19
T4aN2M1 Cea 5.1
5 cm tumor in cecum removed, 17 out of 45 LN
1 cm omental deposit removed
LVI +
Cea post surgery 4.2
MSS, KRAS g12d, Braf WT
MT: 10.9
8/20/19 MRI & PET small liver spots
9/19 - 3/20 FOLFOX
1/02/20 CEA 3.6, 2/15- 4.4 3/15- 4.6, 6/05 4.6
Liver resection 4/15/20
6/20 Ct scan clear
7/20 Cea 8.6
8/20 Cea 12.4, suspicious ovarian cyst
9/20 Hysterectomy SOB (Ovaries and uterus positive for CRC)
post surgery cea 2.6

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beach sunrise
Posts: 250
Joined: Thu Mar 05, 2020 7:14 pm

Re: Finally consults in the works

Postby beach sunrise » Thu Sep 24, 2020 10:53 pm

Hi Vana, it was a good consult overall (great practice for me with future consultations). He let me know he is SOC all the way. That was disappointing. I don't want an onc stuck in the SOC regime. I need real support so on the hunt for it.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

User avatar
beach sunrise
Posts: 250
Joined: Thu Mar 05, 2020 7:14 pm

Re: Finally consults in the works

Postby beach sunrise » Mon Sep 28, 2020 11:55 pm

Second consult summary of my case was more promising but not sure if he is really quit right for me. I will have a follow up face to face with this one hopefully this week. The first consult taught me a few things so will be better prepared for this second one as far as getting a bigger bang for the buck!!!!
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

rachelfromnyc
Posts: 57
Joined: Fri Oct 04, 2019 11:32 am

Re: Finally consults in the works

Postby rachelfromnyc » Sun Oct 04, 2020 12:40 pm

I'm wondering if anyone here has had a consult or is a patient of Dr. Raymond Chang (Meridian Medical Group). I have a consult with him and just wondering if anyone has any tips on how he is
.

I consulted with Dr. Chang last year, his practice is in midtown Manhattan. This was pretty early in my diagnosis so we talked about how Sloan Kettering (i.e., conventional medicine) works since he trained there and I'm being treated there. He is ok with combining different modalities with conventional therapies like chemo if it make sense for the patient. We talked about lentinan injections, dendritic cell therapy and some other things. Since it was early in my diagnosis and I just started chemo, I didn't act on his recommendations. He also wrote a book so that'll give you an idea of how he approaches treatments.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

User avatar
beach sunrise
Posts: 250
Joined: Thu Mar 05, 2020 7:14 pm

Re: Finally consults in the works

Postby beach sunrise » Mon Oct 05, 2020 12:28 am

First consult with him was pretty good. I will have a follow up consult with him more indepth.
Thank you for the book recommendation!
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

User avatar
beach sunrise
Posts: 250
Joined: Thu Mar 05, 2020 7:14 pm

Re: Finally consults in the works

Postby beach sunrise » Wed Oct 07, 2020 6:06 pm

Interviewing 3rd oncologist went well. I learned new things and he gave me some research subjects to study.
I wouldn't mind being his patient as he is located on the beach in sunny FL :)
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"


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