Still here tchan8888

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
tchan8888
Posts: 208
Joined: Mon Mar 25, 2013 8:41 pm
Location: San Francisco Bay Area

Still here tchan8888

Postby tchan8888 » Wed Apr 19, 2017 4:04 am

On pembro clinical trial since 11/15. Seems that it has stopped working. Stayed away from board because it is so hard to read about people who I met on board since 2012 are gone. Struggling mentally and emotionally. Will ask onc about next steps given growth of lymph node tumors. Depressed thinking I may need to go back to traditional chemo regimens and/or let's see what works regimens.

T
Tom, 49 now
12/12 Right Hemicolectomy 2X (29 days in hospital)
12/12 Stage IV: multiple distant LN; no organs
20X: FOLFIRI (stopped working)
8X: 5FU
8X: FOLFOX and Avastin
2016: Clinical trial pembrozilumab MSI high

LMighty
Posts: 40
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Re: Still here tchan8888

Postby LMighty » Wed Apr 19, 2017 6:42 am

Hi tchan8888,

We never interacted but I just want to say I am sorry to hear about your tough situation. The ups and downs are difficult. Is there no option other than chemo?

Hang in there and keep up the fight. Don't lose hope.
Supporter to my mom (64 yr); KRAS wild type

2012: DX Stage I, rectal cancer; resection and colostomy, no chemo
5/16: DX Stage III, mets found; right groin lymph node and soft tissue nodules
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid, NO visible tumour on scan
7-12/16: Xelox + Avastin X 6 rounds
1/17: Clean PET scan, NED
2/17: Pleural effusion; cancer cells found in fluid AGAIN
3/17: Pleural tap + pleurodesis
4/17: Starting Irinotecan + Erbitux

stu
Posts: 521
Joined: Sat Aug 17, 2013 5:46 pm

Re: Still here tchan8888

Postby stu » Wed Apr 19, 2017 12:38 pm

Good to see you posting . I am sorry it's stopped working and hope you have a different treatment option other than chemo. You have done so well enduring all that treatment and totally understand it's hard when people pass you have connected to. We are still here to support you though.
Take care,
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

User avatar
ktwmn
Posts: 323
Joined: Tue Aug 02, 2011 9:41 am

Re: Still here tchan8888

Postby ktwmn » Wed Apr 19, 2017 3:13 pm

Tom,

Good to see you again, although sorry to hear of the roller coaster. There have been so many new immuno combos that have come out in the past year, I am sure there is another non-chemo option out there. Check DK37's curated clinical trials list, also on Maia's signature.
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

kiwiinoz
Posts: 1060
Joined: Thu Jan 03, 2013 11:44 pm

Re: Still here tchan8888

Postby kiwiinoz » Wed Apr 19, 2017 6:10 pm

Tom
Good to see you and I have tried searching for you and your blog, to see how you were doing but could not find you.
I am glad to hear that you are still here, but can completely understand that you are now facing a difficult situation.
OK, I guess exercise is not on your list of priorities at the moment, but you always were an avid gourmet. What and where have you been recently?
I have not had Ramen since my diagnosis, but my wife loves Ramen, and there is a new ramen bar that has opened up around the corner. I went there yesterday with her for lunch and I must admit I had some serious food envoy as I was eating Tofu Salad, and she was eating Tonkotsu Ramen (they only make 10 per day).
I am glad you posted Tom.
Kiwi (I graduated from the school of 2012 as well)
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 27 March 2017
Port Out 26 March 2015

DarknessEmbraced
Posts: 2529
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still here tchan8888

Postby DarknessEmbraced » Wed Apr 19, 2017 7:43 pm

I'm sorry that the trial stopped working.*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 01/21/2016
NED 11/10/16

jdepp
Posts: 473
Joined: Sun Sep 28, 2008 7:53 pm

Re: Still here tchan8888

Postby jdepp » Wed Apr 19, 2017 8:37 pm

Great to see you back! Hope you're still livin' large. I've been holding on and slowly getting worse myself. I hope you'll find another trial that works, or a tolerable maintenance regimen.

Old timers of the world, unite!

All best, jdepp
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16

Jacques
Posts: 301
Joined: Sun Dec 28, 2014 10:38 am

Re: Still here tchan8888

Postby Jacques » Thu Apr 20, 2017 4:00 am

Tom -
It was so nice to see your post. I have been thinking about you lately and wondering how you are doing.

However, I'm sorry to hear that your Keytruda® (pembrolizumab) trial seems to have stopped working. How many cycles have you had so far -- around 25? How many quarterly follow-up scans have you had so far -- around 6? And when did they first start noticing a diminished response?

According to the protocol, you can have up to 35 cycles (about 2 years) of treatment, so they could conceivably continue treatment until this November. But are you saying that they might be stopping your participation before the 35th cycle? If so, I hope they can line up another trial appropriate for MSI-H patients in your situation.

Apparently no preliminary results have been posted for your trial so far, but I was wondering if your oncologist might have some informal comments on how other patients in the trial have been doing. Does it look like Keytruda® might hold promise for eventual approval in the case of colorectal cancer? Right now, Keytruda® is an approved treatment and is stocked in hospital pharmacies, but it is only officially approved for use with four indications -- advanced melanoma, advanced non small-cell lung cancer, head and neck squamous cell cancer, and Hodgkin lymphoma. I know there are some people here who are eagerly awaiting the results of the Keytruda® trial with colorectal cancer.
DX(2012): RC
Stage II, T4 N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0
----
Info links:
Create Your Signature
List of Forum Features
Colorectal Cancer Stages (TNM)

Achilles Torn
Posts: 44
Joined: Fri Dec 16, 2016 2:41 pm

Re: Still here tchan8888

Postby Achilles Torn » Thu Apr 20, 2017 1:29 pm

Tom,

Glad to see you post. You don't know me but I am an avid 'back reader' of these boards and as a fellow Lymph node met's type I have read most of your posts.

I'm sorry for the difficulty with seeing people pass on the boards, and I have to admit having watery eyes reading some posts from up to 10 years ago myself.

However, I must tell you for a new person like me, reading fresh posts from long term survivors like you (and Jdepp) gives a boost of hope and some inspiration to educate myself even more from past postings.

I'm sorry to hear you seem to have had growth, immunotherapy can sometimes work in strange ways and I hope your next treatment proves effective.

Thanks for coming back to the board.

AT
40 yo Male. DX By Surgeon Dec. 8 2016
Sigmoid Colectomy Dec. 9 2016
Pathology T3N2b?MX 19 of 24 Nodes Positive.
peri colonic tumor deposits 8cm from Tumor. Perineural invasion positive.
PET scan shows Para-Aortic and Iliac Lymph node spread.
Moderately differentiated. MSS. KRAS/BRAF Wild
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after 1st round

TXLiz
Posts: 110
Joined: Thu Sep 22, 2016 3:31 pm

Re: Still here tchan8888

Postby TXLiz » Thu Apr 20, 2017 3:14 pm

I am sorry you find yourself here again.

I hope your onc can help you sort this out.

Prayers for you, and good wishes.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1


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



Who is online

Users browsing this forum: BIG ROB 69, Bing [Bot] and 39 guests