Made it almost 2 years, now it’s back. Any MD Anderson advice?

Please feel free to read, share your thoughts, your stories and connect with others!
Tdubz
Posts: 152
Joined: Sun May 07, 2017 11:01 am

Made it almost 2 years, now it’s back. Any MD Anderson advice?

Postby Tdubz » Fri Feb 22, 2019 5:39 pm

I haven’t been here in a while because honestly I have been feeling great and hardly even thought about cancer anymore. I was first diagnosed in March 2017 as stage 3b. Surgery and chemo all went fine and I was cancer free ever since. I went to my PCP for a regular physical last year and he noticed some high liver numbers in my bloodwork so my onc decided to do a pet scan. The ct part of the scan didn’t show anything, however the pet did show a very small area with very slight uptake. This lead to an mri which showed a 5 mm spot on my liver. It was too small to biopsy so we monitored it to see if it would grow. The next mri was a month later and there was no change. I was pretty happy about that but obviously we kept monitoring it. I had my next round of scans this week. I logged on to my portal and saw my ct scan results didn’t find anything. I was pretty hopeful after seeing that, however my mri results hadn’t been updated yet so I got those at my appointment with my onc. Those results weren’t what I was hoping. The spot had tripled in size. So I’m guessing surgery and chemo are in my future again. I love my local cancer center and I’m meeting with a surgeon from there soon, however I’m only a few hours from MDA and now that I could be stage 4, I feel like I might as well go to one of the best. My onc said he’d go ahead and send my records there. What are the next steps I need to take? Is there a really great onc or liver surgeon I should be looking for? Is it easy to work with both MDA and your local cancer center? Any other tips or advice about MDA?

rp1954
Posts: 1526
Joined: Mon Jun 13, 2011 1:13 am

Re: Made it almost 2 years, now it’s back. Any MD Anderson advice?

Postby rp1954 » Fri Feb 22, 2019 6:19 pm

We found our best options by getting better data and more opinions. MDA doctors (alums) more galvanized me, they didn't have the all the answers we wanted.

Most people ignore me on this, but I will say it again, information is power, and survival - get better blood data and let's discuss it.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

User avatar
ginabeewell
Posts: 414
Joined: Wed Oct 24, 2018 10:30 am

Re: Made it almost 2 years, now it’s back. Any MD Anderson advice?

Postby ginabeewell » Sat Feb 23, 2019 1:57 am

Have you looked into the HAI pump? Now might be the time given that this may have progressed to your liver and is the most common site for recurrence.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

stu
Posts: 1343
Joined: Sat Aug 17, 2013 5:46 pm

Re: Made it almost 2 years, now it’s back. Any MD Anderson advice?

Postby stu » Sat Feb 23, 2019 5:01 am

rp1954,
Actually think we are in awe of your knowledge but not quite sure how to go about it .
You have been amazing .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: Made it almost 2 years, now it’s back. Any MD Anderson advice?

Postby hopie » Sat Feb 23, 2019 5:49 am

rp1954 wrote: Most people ignore me on this, but I will say it again, information is power, and survival - get better blood data and let's discuss it.


Just wanted to say that the linked part didn't work--for me at least, and as someone else who's listening wholeheartedly but is not equipped enough to digest every piece of information you're so kind to provide, I agree with stu!

stu wrote:rp1954,
Actually think we are in awe of your knowledge but not quite sure how to go about it .
You have been amazing .
Stu
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

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

Re: Made it almost 2 years, now it’s back. Any MD Anderson advice?

Postby LPL » Sat Feb 23, 2019 6:15 am

hopie wrote:
rp1954 wrote: Most people ignore me on this, but I will say it again, information is power, and survival - get better blood data and let's discuss it.


Just wanted to say that the linked part didn't work--for me at least, and as someone else who's listening wholeheartedly but is not equipped enough to digest every piece of information you're so kind to provide, I agree with stu!

stu wrote:rp1954,
Actually think we are in awe of your knowledge but not quite sure how to go about it .
You have been amazing .
Stu

I also agree with Stu. Wish I could order tests myself here in France, like you can in USA (via Lifeextension) - we do get CA 19-9 tested in the regular check-ups and I have managed to add Crp and LD. Sorry rp1954, the hyperlink didn’t work for me either.
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

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

Re: Made it almost 2 years, now it’s back. Any MD Anderson advice?

Postby Pyro » Sat Feb 23, 2019 8:17 am

MD Anderson surgically took out 13 tumors and later ablated a recurrence, still hasn’t come back a few years later. Cut that sucker out and move on. Call MD Anderson and tell them to expect a package from your onc, they’ll look it over and, if they can help you, set up a consult. They may tell you to do chemo first, ay other option leaves that crap in your liver.
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!

rp1954
Posts: 1526
Joined: Mon Jun 13, 2011 1:13 am

Re: Made it almost 2 years, now it’s back. Any MD Anderson advice?

Postby rp1954 » Sat Feb 23, 2019 9:07 am

Yeah, I'm having trouble with the link, too. Page with my three comments, was:
Initial Recommended Blood Tests, by 3suns, Nov 23, 2015 viewtopic.php?f=1&t=53111

Where we really need to get to is our own summary pages, equal to a spreadsheet of all data, linked to our signature. Then we could do things that would mine the power of our tests. For example, I talk about CA199, which is noisey, especially on standard chemo and other inflammatory treatments. For us, we were are to remove the noise by metronomic immunochemo AND vitamin/nutritional supplements and holding variables like HgbA1C, TSH, hsCRP relatively constant for long periods. Mining group experience, we would begin to be able to decode the noise somewhat more than is possible from perfunctory or missing papers.

Some of these panels I dug out of the literature because of people here getting totally blindsided. "I'm ok" when they were on the brink of total disaster and could have seen it coming. Often medicine will dismiss early warning or better data as having no "proven" survival value, which I view as several failures of "standard" that can be hot wired around.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

radnyc
Posts: 432
Joined: Tue Apr 06, 2010 6:32 pm

Re: Made it almost 2 years, now it’s back. Any MD Anderson advice?

Postby radnyc » Sat Feb 23, 2019 9:37 am

MSKCC
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
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 '11
HAI Pump removed Dec '15

Cmarie03
Posts: 29
Joined: Sat Feb 16, 2019 6:35 pm

Re: Made it almost 2 years, now it’s back. Any MD Anderson advice?

Postby Cmarie03 » Sat Feb 23, 2019 11:06 pm

I don’t have any advice as far as doctors or treatment but I can tell you it’s been very easy and streamlined for me to work locally with my onc for chemo and md Anderson for my scans/treatment plan. I have been able to get appts easily around when I will be at md for my scans and I have been impressed with their doctors. It’s worth a shot to go and get a second opinion in my opinion
Diagnosed stage IIIC rectal cancer 12/20/18 in ER
4 rounds FOLFOX January 2019-February 2019
Xeloda/Radiation March 2019-April 2019
4 more rounds FOLFOX 6/5-7/17
Surgery sched 8/20/19

User avatar
O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: Made it almost 2 years, now it’s back. Any MD Anderson advice?

Postby O Stoma Mia » Mon Feb 25, 2019 1:15 pm

hopie wrote:
rp1954 wrote: Most people ignore me on this, but I will say it again, information is power, and survival - get better blood data and let's discuss it.

Just wanted to say that the linked part didn't work--for me at least ...


Try this link instead: Initial Recommended Blood Tests

benben
Posts: 314
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Made it almost 2 years, now it’s back. Any MD Anderson advice?

Postby benben » Fri Mar 01, 2019 9:30 pm

Tdubz wrote:I haven’t been here in a while?


Tdubz, I just wanted to say I'm sorry to hear about this. I was just recently wondering about you, as I recalled the elevated liver enzymes awhile ago.
You know our diagnosis and treatments were just a week or two apart. I hope they can get the tumor out and that you'll never have to deal with it again.

Best wishes.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
6/19 CT - NED (2 years!)

Tdubz
Posts: 152
Joined: Sun May 07, 2017 11:01 am

Re: Made it almost 2 years, now it’s back. Any MD Anderson advice?

Postby Tdubz » Sat Mar 02, 2019 11:08 am

Thanks benben. I’m still kinda in shock about it all. I’ve never felt better in my adult life than I do now, so how can i be in this situation? I’m still working on getting into md Anderson. My insurance requires referrals from my PCP for everything so that’s been fun to deal with. Hopefully they will get it all worked out in the next week or two. I have my regular colonoscopy next week so hopefully I can get some good results on that. Good news is my work seems like they are on board to accommodate me again like they did the first go around so that helps to alleviate some stress.

mymom
Posts: 1279
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: Made it almost 2 years, now it’s back. Any MD Anderson advice?

Postby mymom » Sat Mar 02, 2019 1:45 pm

Look into if MD Anderson does the HAI pump.
if you are willing to go to NYC, Dr. Kemeny at MSKCC does the HAI pump- she pioneered it. I thank her for saving my mom's life. My mom started out in May 2011 with one liver tumor and after the HAI pump, a few remissions she is in her longest remission. She has been NED since October 2015. I would at least send your records to Kemeny. My understanding is if it is only in your liver (no lung or other involvement) you are a very good candidate.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Mugenabe and 36 guests