The Colon Club

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.

wow, it feels like you have read my mind! 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.

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?

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

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!

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.

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.

Hi Tim,
Natalia here. Looking fro trial options for hubby (36yo, dx Apr 2019, currently 3rd line).
New to ColonTalk but saw a couple of posts in colontown mentioning you've done RO6958688 plus Atezolizumab.
We're looking into the new version of this trial that now adds an anti-CD20 antibody -NCT03866239
We live in Ireland, hoping to be able to do it in Vall d'Hebron Bcn, either travel or relocate for a while if accepted. I'm having trouble getting any response from them, would you mind sharing some advice for first contact?
Hope the Rogonivo is working for you!

Natalia

Natalia -

Welcome to Colon Talk, and thank you for taking the time to set up a signature before your first post !

Concerning the Phase 1 clinical trial you mentioned (NCT03866239), it looks like among the 18 study locations there are no active centers in Ireland. Apparently, the closest ones to you are in Spain or Denmark:

https://clinicaltrials.gov/ct2/show/NCT03866239#contacts

If you want to see what Phase 2 and Phase 3 clinical trials are currently available to you there in Ireland, you can go to the European Union Clinical Trials Registry and search for trials using "Ireland" and other relevant words as keywords. For example, for Ireland Phase 2 and Phase 3 clinical trials for "colorectal cancer" use:

https://www.clinicaltrialsregister.eu/ctr-search/search?query=Ireland+colorectal

(The Clinical Trials Registry doesn't show Phase 1 clinical trials)

- - - -

Clinical trials director at Val d'Hebron:
https://www.vallhebron.com/en/professionals/josep-tabernero-caturla

Contact form:
https://www.vallhebron.com/en/contact/

- - - -

HAIP pump trial in the Netherlands:
https://www.chemopomp.nl/english

Thanks for the info JJH.
I'm aware of the database and searched it many times. Nothing coming up in Ireland that suits hubby unfortunately. We have cousins in Barcelona a location for NCT03866239 trial. Onc seems to agree it could be his best chance right now that's why I'd like more info on how to contact them. With family around it should be easier for us.
Tnx
N