Stage 4 mCRC with 8 mets on lungs - Information please

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Mayogirl
Posts: 3
Joined: Wed Jun 14, 2017 5:39 pm

Stage 4 mCRC with 8 mets on lungs - Information please

Postby Mayogirl » Wed Jun 14, 2017 5:41 pm

Hello,
My sister (age 44) was diagnosed two years ago with Stage 4 colonrectal cancer with lung mets. Since then has been on Folfox and Folfiri (with Avastin). The cancer on rectum cleared within months of chemo however the mets have only reduced in size. The mets are 10mm or less in size. The most recent scan shows that the mets are beginning to grow and her consultant has said that she should consider clinic trails. She is due to start Regorafenib in the coming days. Any guidance on where to start looking for clinical trials would be great. Also, if anyone has tried other treatments for mets on lungs please let me know. Thanks

Lee
Posts: 4821
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stage 4 mCRC with 8 mets on lungs - Information please

Postby Lee » Thu Jun 15, 2017 9:20 am

Hi and welcome,

My advice, get opinions from major cancer treatment centers. Because of her young age, they should be treating her aggressively, beyond just chemo. Just my opinion.

Two members here, Maia and DK37 have put a trial finder together.

http://colorectalmsstrials.org/

Maybe a place to start. Hopefully Maia or DK37 will chime in soon.

All the best to to you and your sister,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Mayogirl
Posts: 3
Joined: Wed Jun 14, 2017 5:39 pm

Re: Stage 4 mCRC with 8 mets on lungs - Information please

Postby Mayogirl » Thu Jun 15, 2017 4:21 pm

Thanks Lee, appreciate your response. Absolutely agree, we need opinions from major research/treatment centres for CRC. We are based in Ireland so need to spread the net wider and look at clinical trails abroad and get an opinion from a centre of excellence. Where are the main centres for CRC ?

behconsult
Posts: 203
Joined: Fri Jul 04, 2014 4:53 pm

Re: Stage 4 mCRC with 8 mets on lungs - Information please

Postby behconsult » Thu Jun 15, 2017 7:55 pm

Mayo county I take it. I was there last year with family and loved it. I am undergoing cryo-ablation for my lung mets. Three have been frozen gone and have one more next month. Reducing tumor burden is the best way to go in my opinion. There is cryoablation, microwave, and radio frequency in addition to various laser surgery and Davinci system. Best of luck to you.
Stage 3B Age 52
T4; 2/16; spot on perit
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to three spots- Collapsed lung/chest tube 5/17. One more spot to go.

User avatar
Maia
Posts: 2328
Joined: Fri Aug 24, 2012 8:00 am

Re: Stage 4 mCRC with 8 mets on lungs - Information please

Postby Maia » Fri Jun 16, 2017 3:43 pm

Hello, Mayogirl, nice to meet you, despite I'm sorry for the reason you are here. How great that your sister has got you as her advocate!

Mayogirl wrote:Any guidance on where to start looking for clinical trials would be great.


As Lee has said, a fellow of this board, DK37 --Tom Marsilje--, who is a stage IV patient and a scientist, has put together a CLINICAL TRIALS FINDER FOR MSS- CRC, that curates/ selects data from clnicaltrials.gov. I help him. But the updated link to that finder would be:
http://trialfinder.fightcrc.org/
You can read a bit about the history of that finder, and other useful links here https://coloncancersupport.colonclub.co ... =1&t=57950
I'm *assuming* your sister is MSS. If she has not been tested for MS status --MS stable or MS Instable High--, that is absolutely important, because treatments have changed during the last *months*, about what is pertinent right now for MSS or MSI. So be sure to ask her doctors about her microsatellite status --MSS or MSI.

Said all that... in Ireland there is only one immunotherapy trial for mCRC --both: MSS and MSI-H--, only one but a very promising one, IMHO:
https://clinicaltrials.gov/ct2/show/study/NCT02060188 Investigational Immuno-therapy Study of Nivolumab, and Nivolumab in Combination With Other Anti-cancer Drugs, in Colon Cancer That Has Come Back or Has Spread (CheckMate142)

If you put 'Ireland' as location in the Late Stage Clinical trial finder, you'll access a record for that trial. If you click over the Trial Title --not over the number--, you'll see an emergent window with information about the trial, that includes scientific literature you can print and share with your sister's doctor.

Also, if anyone has tried other treatments for mets on lungs please let me know. Thanks


As you probably know/ has been told, 8 lung mets are considered unresectable, because too much lung tissue would be lost in a normal surgery, that uses wedge resections. However, there is a technique only available in Europe, so far, that allows to certain trained surgeons to excise dozens of metastases: LAPM "Laser Assisted Pulmonary Metastasectomy". It is possible only if the disease is confined in the lungs. Several fellows from this board undergone that; for some, it meant added months of life, but they departed later; for a fellow who tried --is trying-- and strategy to prevent recurrence, it is working so far --she's NED --not evidence of disease-- 3 years after surgery with both, the German and the British specialists. You can read about all that in the several pages of these threads: viewtopic.php?f=1&t=43840 and Lung laser surgery + ADAPT and still NED: viewtopic.php?f=1&t=57644
I dare to suggest this because one of the specialists works at the Royal Brompton Hospital, London, which might be accessible to you.
Let me add that this is mainstream medicine, not just some 'alternative'/ experimental technique.

***************
GERMANY

The inventor of the technique and the machine (laser) used for this is a thoracic surgeon, Dr. Axel Rolle (Coswig, Dresden, Germany) http://www.ctsnet.org/home/arolle
He receive in 2004 an award for this; you can see him at the hospital and describing the technique in this video: http://www.youtube.com/watch?v=H3VH4fQ9Mks
He retired recently but those who him trained continuing working at several hospitals in Germany.

******************
UNITED KINGDOM

During some years, Dr. George Ladas (UK), other thoracic surgeon, trained with Dr. Rolle and in 2010 he started to use the technique at the Royal Brompton Hospital, London.
This is him: http://www.rbht.nhs.uk/healthprofession ... nts/ladas/
(contact info there)

Some newspaper/press articles about this is the UK:

http://www.dailymail.co.uk/sciencetech/ ... stamp.html
http://www.rbht.nhs.uk/media/press-rele ... ?locale=en

I don't know of course if your sister would qualify for this, but thought it was worth mentioning.
Best wishes for you!

Mayogirl
Posts: 3
Joined: Wed Jun 14, 2017 5:39 pm

Re: Stage 4 mCRC with 8 mets on lungs - Information please

Postby Mayogirl » Sat Jun 17, 2017 6:31 am

Thanks a million for the comprehensive reply, plenty to research into, I am meeting her Consultant on Tuesday and will ask about MSI etc. At this stage we are also open to seeing if she can get onto clinical trails in US, so if there at any ideas please let me know and I will investigate. None of the family are in the medical field so it's all learning for us. Thanks again


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