Seeking advice re: recurrence – multiple lung spots

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ForDad
Posts: 84
Joined: Mon Feb 03, 2014 4:13 pm
Location: California

Seeking advice re: recurrence – multiple lung spots

Postby ForDad » Thu Feb 18, 2016 7:57 pm

Hello and sorry that we are all here.

My dad’s latest CT scan showed 5 to 6 tiny spots in the lungs. His oncologist said that if there were fewer spots, he would suggest surgery, but with this number of spots, he’s recommending mild chemo instead. He said that we pursued aggressive treatment after the original diagnosis (4 liver mets) because we had a curative intent, but he no longer thinks my dad’s cancer is curable and would prefer to focus on maintaining QOL for as long as possible.

I don’t currently have the CT scan report, so I don’t know much about the location of these spots and their exact sizes.

I’m not quite sure what to think. I feel like we are giving up by not exploring ablation or surgery or more aggressive chemo, but at the same time, I want to be realistic. From this forum, I have read about laser lung surgeries in Germany & UK, but I am not sure if we can afford that or if my dad would even be willing.

My dad has been enjoying NED status since early 2015, taking road trips to national parks and living fully. He says he feels great. He still has several trips planned, so he asked for a re-scan in two months and start chemo then. The doctor is fine with that.

I would appreciate any advice, encouraging words, your experience with lung mets. I’m looking for hope — my tears don’t seem to stop.
Daughter to Dad age 67 @dx, Dec. 2013 (now 73)
Stage IV cecum, 4 liver mets, CEA 21.8
MSS, KRAS mutant (G13D), MLH1 mutant (V384D), and TP53 mutant (G245S)
1/14 FOLFOXIRI, 2x
2/14 FOLFOX, 1x
3/14 Right hemicolectomy, 2/38 nodes
4/14 FOLFOX, 4x
8/14 Liver resection
9/14 Liver tumor growth: microwave ablation
10/14 FOLFIRI, 6x
1/15 NED
2/16 8 to 10 lesions in lungs
3/16 Avastin + 5FU, 72x
4/19 Growth in lungs, lymph nodes. FOLFIRI + Avastin, 4x (CEA 12.4)
7/19 Started Stivarga + Opdivo
10/19 Start Hospice

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juliej
Posts: 3080
Joined: Thu Aug 05, 2010 12:59 pm

Re: Seeking advice re: recurrence – multiple lung spots

Postby juliej » Thu Feb 18, 2016 8:14 pm

I'm sorry to hear about your dad's new lung nodules, but I'm glad to hear he's feeling so well! :D

With lung nodules, it's all about location. Five to six is a larger number, but it's still possible for them to be treated with either surgery, RFA, immunotherapy, or all three. But it all depends on where they are located, if they are scattered or closer together, etc. The first thing though is to try and control them with chemo. If they shrink from the chemo AND are in a good location, then it's worth asking a thoracic surgeon what he might be able to do. See if you can get a copy of the CT scan report. And, of course, ultimately, it's up to your dad. See how he feels about pursuing a more aggressive approach. It doesn't necessarily have to mean a reduction in QOL.

You seem like such a loving and caring daughter that I'm sure this is hitting you hard. Take care of yourself, okay?

Hugs to you!
Juliej
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

rp1954
Posts: 1523
Joined: Mon Jun 13, 2011 1:13 am

Re: Seeking advice re: recurrence – multiple lung spots

Postby rp1954 » Thu Feb 18, 2016 10:27 pm

I would be looking for doctors that could help me with off-label stuff, like ADAPT and extra modulations, the Life Extension stuff, and/or other natural immune therapies to try to slow the beasts down and improve QoL, or just maybe shrink and dissolve some of the mets. IV vitamin C (+ K2 or K3) may make some chemo (xeloda, or Folfiri) better with fewer side effects.

If you know his peak CEA and CA19-9 and / or Kras, that might help with the off-label stuff.

Simultaneously, I would look for an affordable laser lung surgery site. Perhaps a doctor less fussy about acceptance criteria than Rolle. Rolle, the excellent originator in Germany, sounded like the best financial deal unless someone in Eastern Europe or Asia has come online with a better deal.

We take a more aggressive view of existing technologies. One dr, or even 5 doctors saying "no", or "no hope", doesn't make it so unless it diverts effective actions by the patient, as it often does. We find somebody that knows, paper or flesh, and does better, higher up the pyramid of knowledge.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

ForDad
Posts: 84
Joined: Mon Feb 03, 2014 4:13 pm
Location: California

Re: Seeking advice re: recurrence – multiple lung spots

Postby ForDad » Fri Feb 19, 2016 1:29 am

Thank you Juliej and rp1954 for your replies. Much appreciated.

Hmm, it seems that I've been away from these boards a little too long. I guess I got complacent while my dad was NED. I'm going to have to get up to speed on immunotherapy and Life Extension. I thought ADAPT was for folks only on maintenance, but if my dad is a candidate, then I'll look more into it. Sounds like a good idea to look more into laser lung surgery as well.

This board is such a good source of info. Thank you for sharing.
Daughter to Dad age 67 @dx, Dec. 2013 (now 73)
Stage IV cecum, 4 liver mets, CEA 21.8
MSS, KRAS mutant (G13D), MLH1 mutant (V384D), and TP53 mutant (G245S)
1/14 FOLFOXIRI, 2x
2/14 FOLFOX, 1x
3/14 Right hemicolectomy, 2/38 nodes
4/14 FOLFOX, 4x
8/14 Liver resection
9/14 Liver tumor growth: microwave ablation
10/14 FOLFIRI, 6x
1/15 NED
2/16 8 to 10 lesions in lungs
3/16 Avastin + 5FU, 72x
4/19 Growth in lungs, lymph nodes. FOLFIRI + Avastin, 4x (CEA 12.4)
7/19 Started Stivarga + Opdivo
10/19 Start Hospice

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ANDRETEXAS
Posts: 630
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Seeking advice re: recurrence – multiple lung spots

Postby ANDRETEXAS » Fri Feb 19, 2016 2:00 am

I have a friend who has lung spots after being diagnosed with rectal cancer two years ago. I do not know the locations, but there are "several." She (in her 50's) and her medical team have tried various mixtures of chemo drugs. The earlier ones were not too successful. She has now finished 8 of 12 chemo sessions of her latest combinations, and the spots have either shruck or have remained stable following her PET scan two weeks ago. I guess what I'm trying to get across is that you need to make sure chemo could be an option before deciding it can't be done.
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

stevieb
Posts: 405
Joined: Sat Feb 09, 2013 12:26 am

Re: Seeking advice re: recurrence – multiple lung spots

Postby stevieb » Fri Feb 19, 2016 12:02 pm

I had 5-6 lung spots pop up in Dec. 2014 after laser lung surgery in the UK with Dr. Ladas in Oct and Nov 2014. We treated with Folfiri and Avastin for a few months and 5 out of the six completely disappeared on CT scan. I began maintenance 5FU and Avastin and two of the nodules reappeared (very small) and drew about 1mm/month. This past November, i was able to have both of them cryoablated at MDA and am currently NED. Seek out a large cancer institution for possibly more options if you haven't already. Don't give up!

Stephen
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

User avatar
Rob in PA
Posts: 2001
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Seeking advice re: recurrence – multiple lung spots

Postby Rob in PA » Fri Feb 19, 2016 4:32 pm

I agree with StevieB., seek out a large cancer center and get a second opinion. I had liver mets, had it resected, then had lung mets treated twice with SBRT (two different years) which got rid of most....then had lung mets again and had VATS. Currently NED. Had five lung mets treated with SBRT one time, and three treated the other time.

UPMC hospital in Pittsburgh.
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

ForDad
Posts: 84
Joined: Mon Feb 03, 2014 4:13 pm
Location: California

Re: Seeking advice re: recurrence – multiple lung spots

Postby ForDad » Fri Feb 19, 2016 6:33 pm

Thank you Andretexas, Stephen, and Rob for your comments. Very happy and encouraged to hear of your successes. Continued best wishes to all of you.

My dad is currently at a large cancer center in California (City of Hope). So far, we’ve been extremely happy with all the doctors and nurses. I didn’t accompany my dad to his last appointment, so I wasn’t able to ask the oncologist any questions. Our next appointment is two months from now. Is that too long to wait to ask about options, etc.?!

Do the lung mets have to be a minimum or maximum of a certain size to be candidates for VATS, SBRT, and cryoablation, or is it all about location? I’ll do more research on these procedures as I clearly have a lot to learn. What were your recoveries like from your lung procedures? I wonder if my dad's age is a significant factor in determining whether these procedures are appropriate. He turns 70 this year.

Again, thank you for sharing.
Daughter to Dad age 67 @dx, Dec. 2013 (now 73)
Stage IV cecum, 4 liver mets, CEA 21.8
MSS, KRAS mutant (G13D), MLH1 mutant (V384D), and TP53 mutant (G245S)
1/14 FOLFOXIRI, 2x
2/14 FOLFOX, 1x
3/14 Right hemicolectomy, 2/38 nodes
4/14 FOLFOX, 4x
8/14 Liver resection
9/14 Liver tumor growth: microwave ablation
10/14 FOLFIRI, 6x
1/15 NED
2/16 8 to 10 lesions in lungs
3/16 Avastin + 5FU, 72x
4/19 Growth in lungs, lymph nodes. FOLFIRI + Avastin, 4x (CEA 12.4)
7/19 Started Stivarga + Opdivo
10/19 Start Hospice

User avatar
Rob in PA
Posts: 2001
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Seeking advice re: recurrence – multiple lung spots

Postby Rob in PA » Sun Feb 21, 2016 12:40 pm

When I had SBRT it was because I did not qualify for VATS, and then when I did have VATS, it was because I did not qualify for SBRT! Location, location, location.

My first SBRT was part of clinical trial. I had 5 mets and at the time, there was only approval for up to 3 mets....hence the trial.

Recovery from VATS was not a piece of cake (although some on here reported very easy recovery), I had pain for a couple weeks and to this day (VATS was 1.5 years ago) I still have numbness on outside of my chest). BUTT, it all worked so far, so I'm happy with results and choices I made.

Best to you and your Dad.
Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

ForDad
Posts: 84
Joined: Mon Feb 03, 2014 4:13 pm
Location: California

Re: Seeking advice re: recurrence – multiple lung spots

Postby ForDad » Sun Feb 21, 2016 7:29 pm

Thank you for the info, Rob. Great to hear that you're happy with your decisions and results. That's all we want, too — to be comfortable with our decisions and not have any regrets later. Continued successes to you.

Sue
Daughter to Dad age 67 @dx, Dec. 2013 (now 73)
Stage IV cecum, 4 liver mets, CEA 21.8
MSS, KRAS mutant (G13D), MLH1 mutant (V384D), and TP53 mutant (G245S)
1/14 FOLFOXIRI, 2x
2/14 FOLFOX, 1x
3/14 Right hemicolectomy, 2/38 nodes
4/14 FOLFOX, 4x
8/14 Liver resection
9/14 Liver tumor growth: microwave ablation
10/14 FOLFIRI, 6x
1/15 NED
2/16 8 to 10 lesions in lungs
3/16 Avastin + 5FU, 72x
4/19 Growth in lungs, lymph nodes. FOLFIRI + Avastin, 4x (CEA 12.4)
7/19 Started Stivarga + Opdivo
10/19 Start Hospice

stevieb
Posts: 405
Joined: Sat Feb 09, 2013 12:26 am

Re: Seeking advice re: recurrence – multiple lung spots

Postby stevieb » Sun Feb 21, 2016 8:55 pm

I have been very lucky with my procedures! Both if my VATS surgeries went well and was back at work in three days. The laser resections took a little longer but was back to work in two weeks. My cryoablations were smooth and was back at work in two days. I have been very lucky! Best wishes!
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

ForDad
Posts: 84
Joined: Mon Feb 03, 2014 4:13 pm
Location: California

Re: Seeking advice re: recurrence – multiple lung spots

Postby ForDad » Mon Feb 22, 2016 4:32 pm

Wow, Stephen, back at work so soon after your procedures! That's awesome. Continued NED to you.
Daughter to Dad age 67 @dx, Dec. 2013 (now 73)
Stage IV cecum, 4 liver mets, CEA 21.8
MSS, KRAS mutant (G13D), MLH1 mutant (V384D), and TP53 mutant (G245S)
1/14 FOLFOXIRI, 2x
2/14 FOLFOX, 1x
3/14 Right hemicolectomy, 2/38 nodes
4/14 FOLFOX, 4x
8/14 Liver resection
9/14 Liver tumor growth: microwave ablation
10/14 FOLFIRI, 6x
1/15 NED
2/16 8 to 10 lesions in lungs
3/16 Avastin + 5FU, 72x
4/19 Growth in lungs, lymph nodes. FOLFIRI + Avastin, 4x (CEA 12.4)
7/19 Started Stivarga + Opdivo
10/19 Start Hospice


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