Looking for Options for un-resectable lung Mets

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RobM
Posts: 24
Joined: Wed Nov 05, 2014 4:29 pm

Looking for Options for un-resectable lung Mets

Postby RobM » Tue May 14, 2019 1:38 pm

Hello All,

It has been awhile since I have posted. I have been doing treatments for my lung mets since April of 2016. I have been through all the typical chemo treatments i.e.. Irinotecan with Avatin, and Cetuximab and even tried Oxaliplatin at a reduced dose due to anaphylaxis in 2014, only to be spend 4 more days in the hospital due to another reaction. My Dr. is now trying me on Strivarga , I should be starting in a couple of weeks, we are currently waiting for insurance approval. My mets are not resectable as there are too many ( 8 at last scan with 3 of them 3 cm or a little larger) bilateral.

I have read that there are some doctors that can perform laser surgery. Does anyone have any experience with this?or know where to go? I heard Germany and London but I am not sure who to contact? Or does anyone have another recommendations for other treatments? I am running out of options.
Rob 43
DX August 2014 T3n1m0
CEA 27
10/30/2014 6 wks chemorad 5-fu
CEA19
APR December 18th 2014 6/10 nodes positive
CEA Down to 5.3 / 5 weeks post op
FOLFOX 1/27/2015
Reaction to 2nd Round Oxi 2/10/2015 3 days in the hospital
5-fu only CEA down to 3.2
5/5/15 CEA 2.6
6/17 CEA 2.2
7/14 CEA 1.8

Claudine
Posts: 124
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Looking for Options for un-resectable lung Mets

Postby Claudine » Tue May 14, 2019 3:33 pm

Hello RobM,
Did your doctor mention SBRT (Stereostatic Body radiation Therapy) as an option? My husband had the procedure done for a lumbar spinal met that was resistant to standard radiation. It is so focused that it does not affect adjacent healthy tissue like standard radiation does.
Best of luck,

Claudine
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Krohn's disease)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, 17, 10, 6.4, 5, 4.8, 4.2, 3.6, 3.2, 3.3, 3.2, 3.7, 4.3, 4.2, 4.2,
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

Claudine
Posts: 124
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Looking for Options for un-resectable lung Mets

Postby Claudine » Tue May 14, 2019 3:36 pm

Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Krohn's disease)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, 17, 10, 6.4, 5, 4.8, 4.2, 3.6, 3.2, 3.3, 3.2, 3.7, 4.3, 4.2, 4.2,
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

stu
Posts: 1193
Joined: Sat Aug 17, 2013 5:46 pm

Re: Looking for Options for un-resectable lung Mets

Postby stu » Tue May 14, 2019 3:50 pm

Hi ,
If you use the search function ( small magnifying glass on the top right ) and type in “Any surgeons doing laser surgery “. All the contact information is there . Sophy has included the contact phone number for Dr Drewes in Germany and you can read the feedback from the people who have had the surgery .
Take care,
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 .

JulesW
Posts: 14
Joined: Thu Jun 21, 2018 1:48 pm

Re: Looking for Options for un-resectable lung Mets

Postby JulesW » Tue May 14, 2019 4:07 pm

Hi Rob,
I had bilateral lung mets removed using laser-assisted pulmonary metastatectomy in Germany in October 2018 and November 2018. I had four mets in my right upper lung and three mets in my left lower lung and was told they were not resectable. I sent my latest CAT scan images to Dr. Drewes in Coswig, Germany and he said they were resectable but they would probably need to take most of the left lower lobe. In short, the procedures were successful and I spent six weeks in Germany. There are two spots in my lungs that we are following now which are thought most likely to be post surgical change but I am back on chemo, getting regular surveillance CAT scans. I’m prepared for the next step if they grow.
Best wishes
Jules W
Dx at 46 rectal ca. 12/16
CT scan 1/17 4 spots R upper lung largest 8 mm
f/u CT scan 4/17 showed spots in lung stable
LAR 1/17 rectal tumor stage 2b, 0/30 nodes pos
Xeloda x 6 mos
CT 6/18 - 4 nodules right upper lung had inc. in size, also 3 new spots in left lower lung
6/18 folfiri + Avastin x 5 cycles
radiation onc and surgeon say too many nodules
LAPM Germany 10/18 - 10 nodules removed right lung, 4 cancer
11/1/18 R pneumothorax - chest tube placed surgically
11/6/18 planned LAPM for L lung

Faith42
Posts: 31
Joined: Mon Sep 01, 2014 4:37 am
Location: New Mexico

Re: Looking for Options for un-resectable lung Mets

Postby Faith42 » Thu May 23, 2019 2:16 am

Hola, I hardly ever post, but I’ve had both lungs resected and then little spots showing up. I’m a MD Anderson patient and I’ve had cyrtoabeltion twice which is freezing it. It’s been in the same spot with cyrtoabeltion and the second time we iced more of it. That was back in Dec. of 17 last time and just got a clean scan. It was new, but I believe that insurance pays now so I’d call and check.
Mom 42 at Dx
Child 11 yo
Dx 1/12 Stage IIIT N2b. 11/57 nodes
Chemo 3/12
Dx 8/14 Stage IV to lung
10/14 2 lung mets surgically removed. 2 VATS left and right
Chemo 4/15
Rising CEA and met to right lobe of liver 1 cm. surgery in 6/15
Rising CEA and cryoabeltion 10 mm on left lung in 12/16
Rising CEA and met to liver. Surgery 10/17
Cryoabeltion 12/17
NED 2/14/18
Warrior and Fighter

zephyr
Posts: 250
Joined: Thu Aug 18, 2016 7:31 am

Re: Looking for Options for un-resectable lung Mets

Postby zephyr » Thu May 23, 2019 5:51 pm

I also had "inoperable" lung mets removed in Coswig last year. As Jules mentioned, you need to contact Dr. Drewes and send a DVD of your most current CT scan. Don't just send the written report - he will want to review the scan "film" himself. Depending on location and other stuff, the YAG laser can remove 80-100 lung mets. Among the conditions I had: no chemo for 6 weeks prior to surgery, no flying for 4-6 weeks after surgery because of the risk of lung collapse, and no cancer currently anywhere outside of the lungs.

Here's the contact information:

http://www.fachkrankenhaus-coswig.de/leistungspektrum/thoraxchirurgie.html

I think it was a UK patient who told me that the surgery is no longer available in London.

Hope this helps.
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, MSS, 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
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

rp1954
Posts: 1521
Joined: Mon Jun 13, 2011 1:13 am

Re: Looking for Options for un-resectable lung Mets

Postby rp1954 » Sat May 25, 2019 9:41 am

One Plan B, might be to try to stop cell clusters' circulation and seeding with some metronomic/maintenance scheme until you got to Germany. One example, might be Lin's ADAPT formula extended with PSK and/or baby aspirin. My wife actually took a lot more stuff to achieve/keep chemo sensitivity.

A previous problem with the Germans is that they have given up on lung surgery in the past, if there are other met sites out side the lungs. I think that is a conceptual mistake if one does enough metronomic chemo to make cumulative progress with multiple surgeries, a multimodal plan.
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


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