Tim - how is he doing?

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mariane
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Tim - how is he doing?

Postby mariane » Fri Jan 06, 2017 11:14 pm

I often think about Tim. I hope he is doing well. His last scans were good. I keep my fingers crossed for him. Did somebody hear from him???
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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Green Tea
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Joined: Mon Oct 24, 2016 10:48 am

Re: Tim - how is he doing?

Postby Green Tea » Mon Jan 09, 2017 3:42 am

mariane wrote:I often think about Tim. I hope he is doing well. His last scans were good. I keep my fingers crossed for him. Did somebody hear from him???

Which Tim are you asking about? There are several members here named "Tim".

Is this the one you had in mind?

Tim (Bowel Cancer Awareness VIDEO) UK

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Maia
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Re: Tim - how is he doing?

Postby Maia » Mon Jan 09, 2017 4:29 am

If it is Tim UK, I heard from him yesterday, it sounds like he's doing well : )

mariane
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Re: Tim - how is he doing?

Postby mariane » Mon Jan 09, 2017 1:19 pm

Thank you so much Green Tea and Maia!

I meant Tim UK. I was so happy with his good scans after beginning the trial. It is one of trials may be the one to make change for us.
The very sad message from Vilca about the trials that do not bring any change and are just a pain for patients made me think even more that there must be something working. In my own eyes I saw the big change for AIDS patients, than for leukemia patients, the melanoma patients just recently. I think it is time for the crc patients - right now. Maybe Tim's trial is the first one which will make the so much needed change for MSS crcs.

Thank you so much Maia for the good news about Tim!!! :):) Some more sunshine today! :)
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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Maia
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Re: Tim - how is he doing?

Postby Maia » Mon Jan 09, 2017 1:28 pm

mariane wrote:Thank you so much Green Tea and Maia!

I meant Tim UK. I was so happy with his good scans after beginning the trial. It is one of trials may be the one to make change for us.
(...) I think it is time for the crc patients - right now. Maybe Tim's trial is the first one which will make the so much needed change for MSS crcs.


Absolutely! There is at least other patient at MSK, at that same trial, that is doing well --even if it's early to tell. And it's already a whole new game for those MSI.

mariane
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Re: Tim - how is he doing?

Postby mariane » Mon Jan 09, 2017 1:43 pm

I didn't know it was for MSI patients and that Tim was MSI.

I thought it was for all solid tumor patients with positive CEA.... :(

Of course good, Tim is MSI and it is working for him. I only thought there is already something showing promise for MSS.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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Maia
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Re: Tim - how is he doing?

Postby Maia » Mon Jan 09, 2017 1:54 pm

No, no, no --Tim is MSS!
My comment is that for MSS (like Tim, Celine and some others) we are just starting to see promising good results AND that for MSI it was *already* a new whole game :)

mariane
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Re: Tim - how is he doing?

Postby mariane » Mon Jan 09, 2017 1:55 pm

Hooray!!!!! :):):):)
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

Stanfordmom
Posts: 612
Joined: Wed May 14, 2014 1:32 am

Re: Tim - how is he doing?

Postby Stanfordmom » Mon Jan 09, 2017 7:55 pm

That is great news, Maia!

Which trial is Tim UK on?
Thanks a lot,
Sha
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Tim - how is he doing?

Postby DarknessEmbraced » Mon Jan 09, 2017 8:01 pm

I'm glad Tim is doing well! :)
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! :)

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Tim - how is he doing?

Postby lpas » Mon Jan 09, 2017 8:13 pm

Stanfordmom wrote:That is great news, Maia!

Which trial is Tim UK on?
Thanks a lot,
Sha


Yes, I'd like to know too. So glad to hear he's doing well!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

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Maia
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Joined: Fri Aug 24, 2012 8:00 am

Re: Tim - how is he doing?

Postby Maia » Mon Jan 09, 2017 8:48 pm

He's doing the trial #NCT02650713

I pointed to his post in my first post in this thread. viewtopic.php?f=1&t=56553#p447107 I'll quote him fully:

Tim UK wrote:https://clinicaltrials.gov/ct2/show/NCT02650713

I moved onto Phase 1 trials a couple of months ago. I and my oncologist liked the science behind this one (above). It's a combination of bispecific antibody plus pd-l1 inhibitor. Previously I did 8 months on the (Phase 2/3) braf/MEK/egfr triplet which had amazing results until resistance occurred. I'm 7 weeks into this one and seeing good early results: several tumour sites have disappeared, sharp drop in SUV numbers in others, biopsies showing substantial necrosis. The docs seem excited. Side effects totally tolerable (nothing compared to the folfoxiri + avastin last summer, or even the triplet). Most importantly for me, I feel great ... totally unencumbered and kind of light / fresh / relaxed. I see they are recruiting at a few US sites.


The trial is called A Study of the Safety, Pharmacokinetics, and Therapeutic Activity of RO6958688 in Combination With Atezolizumab in Participants With Locally Advanced and/or Metastatic Carcinoembryonic Antigen (CEA)-Positive Solid Tumors

If you click on the link in my signature, you will get to a MSS immuno trial finder. If you put the number of the trial (NCT02650713) or, for example, the drug (RO6958688 ) in the search box (the magnifying glass), you will get the entry for that trial. If you click over it, you will have more information and links to literature about it, all what we know about it. I'll transcript here:

Drug RO6958688 + PDL1
"Im"/"Tw" Im (Im = Immunotherapy; "Tw" = treading waters --it means a trial that it has chances of, at least, buy some time; it has some at least preclinical activity for CRC. The immuno ones are the ones aiming for complete responses/cure)
Locations (as of 12/2016)
California, Connecticut, Massachusetts, New York, North Carolina, France, Netherlands, Spain
NCT#
NCT02650713
NCT# Link
https://clinicaltrials.gov/ct2/show/NCT02650713
Comments (how it is supposed to work, the mechanism of action)
Membrane Bound CEA-CD3 Bifunctional + PDL1 combo
Allow prior PD-1? (it means if the trial accepts people who already did a trial with an anti PD-1 (which is and will be more and more common... going for an immuno trial after the other, instead of standard of care. In this case, yes, it allows previous PD-1, therefore the "OK"
PD1-OK
Publication?
http://clincancerres.aacrjournals.org/c ... 6.full.pdf
Publication #2?
http://www.tandfonline.com/doi/full/10. ... 16.1203498

Tim UK
Posts: 76
Joined: Fri Jun 12, 2015 1:05 am

Re: Tim - how is he doing?

Postby Tim UK » Sat Feb 04, 2017 3:55 pm

Hi guys -

I've been offline for a while, sorry. By way of an update, especially for those of you actively pursuing immunotherapy trials (and keeping an eye on mine), latest scans show I may have some progression. CT shows an apparent liver lesion, new. I've been on the programme for 4 months, with great results until now. The docs are surprised and disappointed. I'm meeting early next week to validate the results and discuss options.

Tim
https://youtu.be/qoQbY4A5RNA
05/15 L hemi-colectomy
05/15 Dx st 3 T4N2M0 @43
kids: now 13, 10
BRAFm mucinous - KRASw
06/15 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
11/15 CRS+HIPEC
1-8/16 BRAF triplet (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: range 16;650 to 1;36 back to 4;135
8/16 progression
10/16-6/18 : NCT02650713
7/18-9/18 : anti-GITR; ERK inhib
10/18-4/19: folfoxiri+avastin
7/19-9/19 enco+cetux+Bini
10-19 starting regonivo

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: Tim - how is he doing?

Postby mariane » Sat Feb 04, 2017 7:04 pm

Tim,
Thank you for posting
I am sorry that this trial med stopped working. You have very smart oncologist. I am sure he will find something good. As Tom said sometimes we need several swings.
Good luck and lots of prayers!
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Tim - how is he doing?

Postby DarknessEmbraced » Sat Feb 04, 2017 7:28 pm

I'm sorry your trial didn't work out and hope your oncologist will find another trial that will help!*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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