NCT02650713 - RO6958688 plus Atezolizumab

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Tim UK
Posts: 70
Joined: Fri Jun 12, 2015 1:05 am

NCT02650713 - RO6958688 plus Atezolizumab

Postby Tim UK » Sat Dec 16, 2017 5:16 pm

Hi

I realise I haven't posted for a while and thought it might be helpful to circulate the answer to a PM I received from a fellow member recently. Please follow up with other questions and I'll be happy to try and answer.

Best wishes,
Tim

My experience has been positive. I've been on the trial for 14 months (since Oct 16). My tumours did start shrinking after about 4 weeks. It has not been a straight line however ... There have been some that grew a little, and some that shrank. On balance though, my disease has been stable to slightly lower.

It certainly hasn't cured me (of course). My doctors have an interesting view: unlike chemo, where the outcome is pretty binary (it either works or does not), this is more nuanced ... I feel as if I am living with the disease in a kind of balance. The side effects are much much less than chemo. I live a good life, I hike, run, play sports, hang out with my kids, friends, family, eat, drink as I wish. And yet ... the disease is still there on scans, biopsies etc.

The logistics are a bit tiring. I fly each week from London to Barcelona, where I spend a day and a night. But it's worth it.
https://youtu.be/qoQbY4A5RNA
05/15 L hemi-colectomy - robotic, laparoscopic
05/15 Dx st 3 T4N2M0 @43
kids: 11,7
BRAFm mucinous - KRASw
06/15 2 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 therapy (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: 1/16 16;650 | 2/16 3;690 | 3/16 1;36 | 4/16 2;46 | 5/16 1;29 | 6/16 1;42 | 7/16 2;44 | 8/16 3;72 and 4;135
8/16 progression (PET)
10/16 Trial: NCT02650713

veckon
Posts: 128
Joined: Thu Jul 27, 2017 7:44 am

Re: NCT02650713 - RO6958688 plus Atezolizumab

Postby veckon » Sat Dec 16, 2017 6:56 pm

wow, it feels like you have read my mind! :D I am on pembrolizumab and my experience feels very similar overall, especially about existing in a strange state of balance. Good luck, let’s beat this disease.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

User avatar
Robino1
Posts: 451
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NCT02650713 - RO6958688 plus Atezolizumab

Postby Robino1 » Sun Dec 17, 2017 9:21 am

Tim UK wrote:Hi

I realise I haven't posted for a while and thought it might be helpful to circulate the answer to a PM I received from a fellow member recently. Please follow up with other questions and I'll be happy to try and answer.

Best wishes,
Tim

My experience has been positive. I've been on the trial for 14 months (since Oct 16). My tumours did start shrinking after about 4 weeks. It has not been a straight line however ... There have been some that grew a little, and some that shrank. On balance though, my disease has been stable to slightly lower.

It certainly hasn't cured me (of course). My doctors have an interesting view: unlike chemo, where the outcome is pretty binary (it either works or does not), this is more nuanced ... I feel as if I am living with the disease in a kind of balance. The side effects are much much less than chemo. I live a good life, I hike, run, play sports, hang out with my kids, friends, family, eat, drink as I wish. And yet ... the disease is still there on scans, biopsies etc.

The logistics are a bit tiring. I fly each week from London to Barcelona, where I spend a day and a night. But it's worth it.



I really glad that the therapy you're on gives you that balance and your able to really live in spite of having this disease.

I do have a question as I've been debating internally over it. Do you feel that HIPEC was worth going through? Did it help in the long run?
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Tim UK
Posts: 70
Joined: Fri Jun 12, 2015 1:05 am

Re: NCT02650713 - RO6958688 plus Atezolizumab

Postby Tim UK » Sun Dec 17, 2017 7:29 pm

Hi

re HIPEC, I have very mixed feelings. When I did it, the triplet therapy and immunotherapy programs weren't really an option ... so I did it, and was told afterwards that it hadn't gone as planned. (As I'm sure you know, they have to be confident that all macroscopic disease can be eliminated, leaving the hot chemo to get the micro - in my case there was more macro than thought and they only got 90-95% out). So it was quite a depressing period ... the recovery is brutal, and I was wondering the whole time was it worth it.

Knowing what I know now, and speaking specifically about my own case, I would have done the immunotherapy trial first, and also the triplet combo. The HIPEC left me with a much shortened gut and a scar that healed badly, which caused new metastases along the scar line. So I guess I would have left out as a later option. But who knows? Maybe it did more good than the docs thought at the time.

Best wishes

Tim
https://youtu.be/qoQbY4A5RNA
05/15 L hemi-colectomy - robotic, laparoscopic
05/15 Dx st 3 T4N2M0 @43
kids: 11,7
BRAFm mucinous - KRASw
06/15 2 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 therapy (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: 1/16 16;650 | 2/16 3;690 | 3/16 1;36 | 4/16 2;46 | 5/16 1;29 | 6/16 1;42 | 7/16 2;44 | 8/16 3;72 and 4;135
8/16 progression (PET)
10/16 Trial: NCT02650713

User avatar
Robino1
Posts: 451
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NCT02650713 - RO6958688 plus Atezolizumab

Postby Robino1 » Sun Dec 17, 2017 10:02 pm

Tim UK wrote:Hi

re HIPEC, I have very mixed feelings. When I did it, the triplet therapy and immunotherapy programs weren't really an option ... so I did it, and was told afterwards that it hadn't gone as planned. (As I'm sure you know, they have to be confident that all macroscopic disease can be eliminated, leaving the hot chemo to get the micro - in my case there was more macro than thought and they only got 90-95% out). So it was quite a depressing period ... the recovery is brutal, and I was wondering the whole time was it worth it.

Knowing what I know now, and speaking specifically about my own case, I would have done the immunotherapy trial first, and also the triplet combo. The HIPEC left me with a much shortened gut and a scar that healed badly, which caused new metastases along the scar line. So I guess I would have left out as a later option. But who knows? Maybe it did more good than the docs thought at the time.

Best wishes

Tim


Thank you for the details. Exactly what I need to research. :)

I'm sorry they weren't able to get everything. This is such a tough decision and not one to be made lightly. Better to have more input from those that have gone through it.

I hope your cancer continues to be controlled!
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

006w
Posts: 1
Joined: Tue Jan 16, 2018 2:44 pm

Re: NCT02650713 - RO6958688 plus Atezolizumab

Postby 006w » Fri Jan 19, 2018 2:28 am

Tim UK wrote:The logistics are a bit tiring. I fly each week from London to Barcelona, where I spend a day and a night. But it's worth it.

Hi, Tim. Cant write p.m. yet. Do you have your trial in Vall d’Hebron Institute of Oncology (VHIO)? Can you give me your e-mail for some questions? Or please answer me on sokolovy81@gmail.com /Thank you.

katy161
Posts: 1
Joined: Tue Dec 19, 2017 1:03 pm

Re: NCT02650713 - RO6958688 plus Atezolizumab

Postby katy161 » Tue Jun 12, 2018 11:32 am

Hi Tim UK are you still on this trial? I have been doing it since January 2018 and am at a similar point. Cancer is basically the same. I never got much shrinkage but it hasnt gotten worse.


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