Lung mets, update and new trial on the horizon

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Cb75
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Location: Ontario, Canada

Lung mets, update and new trial on the horizon

Postby Cb75 » Mon Sep 09, 2013 4:13 pm

I met with a thoracic surgeon today. My case went to the tumor board this morning. It was decided that I have too many (5) lung mets and they are all too small (most only a few millimetres). The decision is that my best bet is chemo, folfiri and avastin then see how things go. Surgery or sbrt may be an option later. However, something interesting is that this particular surgeon is starting a clinical trial for lung mets where chemo is delivered just to the lungs, similar to the HAI pump for the liver. He said I would be the ideal candidate for this trial, but it doesn't until next fall. He also said there is done other interesting stuff happening, but didn't comment any further.

So now my question is, when do I start chem? I was given the option if starting now or waiting for another scan in three months and reassessing then. What gave others done? The doctors don't have much to say either way. These lung things were stable for a year. Now in the past four months have showed growth. I'm a bit lost.
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

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juliej
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Re: Lung mets, update and new trial on the horizon

Postby juliej » Mon Sep 09, 2013 4:53 pm

I think it depends on how much they grew. Scans aren't perfect and borderline increases are often just a slightly different view of the same nodule. Is your CEA increasing? Have you had a PET scan?

I'm curious about the clinical trial for lung mets (where chemo is delivered straight to the lungs like an HAI pump). I wondered about that exact possibility but thought the vascular structure of the lungs might not lend itself to a central infusion. Let us know what you find out, okay?
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

Re: Lung mets, update and new trial on the horizon

Postby very worried husband » Mon Sep 09, 2013 5:28 pm

interesting stuff. I have nothing useful to say. It looks like your nodules have a slow growth, which is a fantastic news.
best of luck with whatever plan of action you take.
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

missjv
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Joined: Tue Sep 12, 2006 10:38 am
Location: FLORIDA

Re: Lung mets, update and new trial on the horizon

Postby missjv » Mon Sep 09, 2013 6:02 pm

what about radiofrequency ablation for the lungs?

missjv

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Lung mets, update and new trial on the horizon

Postby ams5796 » Mon Sep 09, 2013 6:05 pm

Wow, that clinical trial is so interesting. Please keep us updated. As for the chemo, I would hold out if it were me.


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: Lung mets, update and new trial on the horizon

Postby Cb75 » Mon Sep 09, 2013 6:47 pm

missjv wrote:what about radiofrequency ablation for the lungs?

missjv

I was told too many and too small.

I will keep you updated about the clinical trial. I wish it was an option now. Rather than a year from now.
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: Lung mets, update and new trial on the horizon

Postby Cb75 » Mon Sep 09, 2013 6:50 pm

[quote="juliej"]I think it depends on how much they grew. Scans aren't perfect and borderline increases are often just a slightly different view of the same nodule. Is your CEA increasing?

My cea is normal and always has been.

No pet, just a ct. I'm in Ontario Canada. Pet scans are rarely used. I think it is a coverage issue from our provincial medical coverage. I haven't asked about getting one. I'll have to ask at my next appointment.
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: Lung mets, update and new trial on the horizon

Postby dianne052506 » Mon Sep 09, 2013 9:51 pm

Your recurrence sounds similar to mine. It was found in Oct 2007, after just 8 months off chemo. I've never heard an exact count, but they tell me between 20 and 30 lung nodules. All but a few are sub-centimeter. I consulted with thoracic surgeons at MDA and at MSKCC and both said the same thing. Too many, too small, too spread apart for surgery, and that ablation would not be feasible for so many.
Everyone is different, and this may not work for you, but my onc took the approach that since this was inoperable, and chemo-for-life was a necessity, then I should have just as little chemo as absolutely necessary to hold things at bay. After we found the nodules in Oct, I had monthly scans until we were sure things were growing, then started back on FOLFOX after 3 months. I had just 4 rounds at every 2 weks, and then when a scan proved the chemo had knocked things down quite a bit, then we stretched out the FOLFOX to every four weeks with Avastin every 2 weeks, along with the FOLFOX and in-between. I was able to keep that up for several years (actually went to every 6 weeks with Avastin every 3), before I finally had a reaction to oxaliplatin. Then we did the same thing with FOLFIRI/Avastin.
The key was frequent scanning to be sure that, even though we were stretching out the time between treatments, we were still keeping the nodules at bay. Maybe something like that could work for you until the trial is ready.
Obviously, there are a lot of people here who are like me with lung mets and the thought of such a trial is very interesting. Any information you could provide would be really appreciated.
Best wishes,
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: Lung mets, update and new trial on the horizon

Postby Cb75 » Tue Sep 10, 2013 8:42 am

Dianne thank you for your post. It is helpful to hear from someone with a similar circumstance regarding the lung nodes. I will ask my oncologist about this approach. It seems to make sense, if the nodes respond. In your case, have any of the nodes actually gone away and seem to be dead? This is my ultimate hope, although I am not sure how realistic it is. All of the doctors have said its may be possible.

I will keep everyone posted about the clinical trial.

Carm
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: Lung mets, update and new trial on the horizon

Postby dianne052506 » Tue Sep 10, 2013 9:01 am

Cb75,
I can't say for sure because the radiologists never seem to do a full count. Most of the nodules are so small that they would fit "between" slices on a CT scan, so they wouldn't be captured at all. Since I've been on a clinical trial, the radiologists only note the size of the few that have been above 1 cm, since those are the only ones whose measurements can be used for the trial.
I guess the big kicker is how well things respond to chemo. It seems to have always kept things in line for me; once I started back on chemo, the nodules shrank significantly then seemed to stabilize. As long as they stayed stable, my onc was comfortable in stretching things out. I managed to get 2 additional years out of oxaliplatin, and 2 more out of irinotecan before I had an allergic reaction to each. I firmly believe that if I had tried doing maintenance at an every 2 week schedule, either the side effects would have done me in, or I would have had the allergic reactions a lot sooner. I've just been buying time. The same with the clinical trial I've been on this last year. Things went down a little, then stabilized. When I finished the trial, things grew a little again, so they are tentatively allowing me to stay on the study drug as long as things don't grow even more. Again, just buying time, but I have another scan this week and will know more on Monday.
Maybe something like that would work for you.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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Patience
Posts: 834
Joined: Fri Dec 09, 2011 10:26 am

Re: Lung mets, update and new trial on the horizon

Postby Patience » Wed Sep 11, 2013 6:52 am

If you do certain chemos now, will it eliminate you from qualifying for the trial? That would be something I'd look in to before making a decision. My husband (the patient) interviewed for a trial, and previous chemo treatment was an important component of the screening.

Another consideration is the size of the tumors. Sometimes when they get too many, or too large, it knocks you out of eligibility. So, doing something to keep things a bit under control in the meanwhile, while waiting for the trial, might be an important.

I guess what I'd be asking is for contact info on the upcoming trial, and then getting details on criteria for eligibility, etc, so that I could be putting that into the mix when trying to make a decision. (If it is the thoracic surgeon you already saw, then he should know the details of the trial, making it easier for you to get the info.)
"Sweet dreams till sunbeams find you.
Sweet dreams that leave all worries behind you."

stevieb
Posts: 407
Joined: Sat Feb 09, 2013 12:26 am

Re: Lung mets, update and new trial on the horizon

Postby stevieb » Fri Dec 26, 2014 3:05 am

Carm, any news on this trial you were considering last year?
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

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singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: Lung mets, update and new trial on the horizon

Postby singingholly » Fri Dec 26, 2014 3:34 am

Carm, aren't you on folfiri right now? Or are you off chemo at the moment?
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

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Jack&KatiesMommy
Posts: 633
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Lung mets, update and new trial on the horizon

Postby Jack&KatiesMommy » Fri Dec 26, 2014 9:05 am

Dr Solomon has done RFA on 5 and 6 nodules PER lung (at one time) for me with some as small as 2mm. I have had 6 RFA procedures on my lungs and my last scan showed nothing new and nothing growing so praying that we have rfa'd everything out!
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: Lung mets, update and new trial on the horizon

Postby KWT » Fri Dec 26, 2014 10:27 am

That's great news I'm meeting with an interventional radiologist next week to talk about rfa


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