Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

Postby Maia » Tue Apr 04, 2017 12:26 pm

So happy to see you here, Stephen! Great to know about the insurance!

Cee Cee/ Maia

stevieb
Posts: 401
Joined: Sat Feb 09, 2013 12:26 am

Re: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

Postby stevieb » Tue Apr 04, 2017 1:08 pm

Maia wrote:So happy to see you here, Stephen! Great to know about the insurance!

Cee Cee/ Maia


Thanks Maia, I am currently NED as of last scan on 1/23/17 and am currently on Adapt protocol. I have my next scan coming up at the end of April!! I have no side effects from the xeloda and celebrex. I have been feeling great, almost back to normal, whatever that is now!!
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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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

Postby Maia » Tue Apr 04, 2017 1:26 pm

More than happy to hear that : ) : ) : )

That's right, the regimen should be almost imperceptible, it's metronomic, very low dose chemo. Just enough to keep any potential baddies at bay : )

rp1954
Posts: 1390
Joined: Mon Jun 13, 2011 1:13 am

Re: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

Postby rp1954 » Wed Apr 05, 2017 2:57 am

....currently NED as of last scan on 1/23/17 and am currently on Adapt protocol. I have my next scan coming up at the end of April!! I have no side effects from the xeloda and celebrex. I have been feeling great, almost back to normal, whatever that is now!!


That's great Stephen. There seems to be some large variations in the Xeloda dose people have been getting for Lin's Adapt protocols. Any insights or dose history you could share?

Also you've mentioned cimetidine use on or off in previous years. Any timeline of cimetidine use or CA19-9 background results you could comment on? For pancreatic cancer, 37 units of CA19-9 is the important single use cutoff at dx for pancreatic cancer. For colon cancer, ~19 units of CA19-9 is potentially a stickiness factor that is notable and shouldn't be ignored but it doesn't necessarily show CRC either.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

stevieb
Posts: 401
Joined: Sat Feb 09, 2013 12:26 am

Re: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

Postby stevieb » Wed Apr 05, 2017 12:52 pm

Everyone that I have spoken to (including Dr. Lin) regarding dosage of Xeloda on Adapt is 1000mg twice a day or 2000mg/day while on the Celebrex. I have tried to use cimetidine before and after my surgeries but haven't had any luck with it so far. I have had several lung reoccurances every time. The last two being one spot on each lung twice so maybe it is keeping the quantity down but no way to know for sure.
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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Sophy
Posts: 250
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

Postby Sophy » Sat Jun 17, 2017 5:50 am

I had this surgery in January, June and August 2014. It was difficult lonely and expensive but I have been NED since.

Sophy
dx T3N1M0 Feb 11 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
Oct 2018 CT shows still NED
Continuing ADAPT

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Sophy
Posts: 250
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

Postby Sophy » Sat Jun 17, 2017 5:55 am

And should say - started ADAPT August 2014 after last surgery
dx T3N1M0 Feb 11 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
Oct 2018 CT shows still NED
Continuing ADAPT

zephyr
Posts: 141
Joined: Thu Aug 18, 2016 7:31 am

Re: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

Postby zephyr » Sun Oct 07, 2018 5:57 am

Happily, I’m part of the club. 11 mets removed, 8 in the right lung, 4 in the left.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed

stevieb
Posts: 401
Joined: Sat Feb 09, 2013 12:26 am

Re: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

Postby stevieb » Mon Oct 08, 2018 2:32 pm

So happy for you zephyr! Hope all does well and a speedy recovery. Which Dr. did your surgery?
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
Sophy
Posts: 250
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

Postby Sophy » Tue Oct 09, 2018 3:03 am

So happy to hear that, Zephyr, great result! Hope you will be continuing NED :D

I had routine CT last week and I am still NED since last lung laser surgery August 2014. Hope you are doing well too Stevieb.
dx T3N1M0 Feb 11 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
Oct 2018 CT shows still NED
Continuing ADAPT

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

Postby stu » Tue Oct 09, 2018 3:10 am

Great to see you all doing so well . Amazing results coming through .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

zephyr
Posts: 141
Joined: Thu Aug 18, 2016 7:31 am

Re: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

Postby zephyr » Tue Oct 09, 2018 7:13 am

stevieb wrote:So happy for you zephyr! Hope all does well and a speedy recovery. Which Dr. did your surgery?


Dr. Kern did my right lung and Dr. Drewes did my left lung. Dr. Drewes was ill at the time of the first surgery so Dr. Kern took over. They are both beyond wonderful!

Stevieb: if you don’t mind sharing, would you mind PMing me more information about what you wrote to your insurance company? I obviously didn’t get pre-approval and don’t have a lot of hope but it’s a lot of money and worth a shot.

Sophy: if you happen to see this, Cindy (PT) and Carla (nurse) are still there. What treasures. They remember and speak well of you.

Anyone who would like more information, please free to PM me. I’m so happy to be part of the LAPM club.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed

~WorriedDaughter~
Posts: 3
Joined: Wed Sep 26, 2018 1:07 pm

Re: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

Postby ~WorriedDaughter~ » Fri Nov 16, 2018 1:51 pm

Hi Zephyr,

I would love to know more information regarding the laser surgery you had done. My father is stage 4 with multiple bilateral mets in his lungs. He is currently finishing up chemo (last round will be in December) with positive results (lung nodules along with primary tumor have all shrunk). Unfortunately, his oncologist told him his "type" of cancer is extremely aggressive and the mets will be back at some point, most likely earlier than later. I would like to know of alternative methods other than another go at chemo or potential immunotherapy (which most likely won't work for his mutation). My parents currently live in the US, but coincidentally have both lived in Germany and speak German. So travel and language would not be an issue for us (father is also in very good health, active every day).

Unfortunately, it won't let me PM you (I think it's because I haven't been active enough on the site?) but I would really like to have a side bar with you regarding the specifics of what documents need to be sent, the process, etc. I have done some basic research into it, but it would be nice to hear from someone who has gone through it. Perhaps we can figure out a way to get in contact.

Thanks!
Daughter to father with stage 4 colorectal cancer/lung mets

5/18 - Initial diagnosis
6/18 - Dx Stage 4 with multiple bilateral mets to lungs
7/18 - 5FU + Avastin begun
9/18 - First round (6 weeks) of chemo complete with optimistic CT scan results. Will continue with additional 12 weeks of chemo

zephyr
Posts: 141
Joined: Thu Aug 18, 2016 7:31 am

Re: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

Postby zephyr » Fri Nov 16, 2018 6:14 pm

~WorriedDaughter~ wrote:Hi Zephyr,

I would really like to have a side bar with you regarding the specifics of what documents need to be sent, the process, etc. I have done some basic research into it, but it would be nice to hear from someone who has gone through it. Perhaps we can figure out a way to get in contact.


Hi WorriedDaughter - I sent you a PM with my contact info.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed


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