Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

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

Postby Maia » Wed Jan 22, 2014 9:00 pm

Just bumping this so maybe our Lung Trailblazers Carm (Cb75) and Sophy (just read about your recent surgery... congrats!) update us. How are you doing!!?? :) Best thoughts heading your way.

User avatar
Sophy
Posts: 261
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

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

Postby Sophy » Thu Jan 23, 2014 12:58 am

Hi, it is thanks to Maia and CB75 that I heard about this surgery and CB was so helpful sharing her experiences.

surgery on 14th Jan went well. Four mets removed from my left lung, one was too small to see on scan but surgeon found it during op.

Nine days on I feel pretty good, been outside for a walk in the snow and doing lots of breathing exercises. According to my smily face blowing exercise machine my lung capacity is almost what it was before op and is improving each day. Painkilling tablet twice daily.

Cost to me is quite high as insurance didnt contribute - although it is lower than if I had the surgery privately in New Zealand without insurance paying for it.

The food is not great. I asked if they had some vegetables on my first day and got into big trouble with the nurse. Lots of pasta, bread and cake but also fruit.

Dr here not sure spots in my right lung are cancer so will have them scanned every two months to see what they do. If they are cancerous I will come back for op on right lung.

It would have been incredibly difficult here if I didnt speak some German.

The people are mostly kindly and it is a very clean but spartan hospital.
dx T3N1M0 Feb 2011 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)
June 20 CT shows nodule, bronchoscopy confirms is scar tissue, still NED
Dec 20 stopping Xeloda continue celebrex, cimetedine
Aug 21,March 23 scans show still NED
March 2023 CURED - discharged from Oncology, no more scans or follow up

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Next task...

Postby rp1954 » Thu Jan 23, 2014 3:56 am

I notice all the restrictions that are being placed on this lung procedure, like "cancer spread is strictly restricted to lungs."

No, no, NO! The problem here is that the surgeons often give up too soon, even for well prepared, good risks. Some patients have gone under treatment(s) for the multisite/multiorgan mets, multiple surgeries road to good effect - substantial life extension or curative surgery, good quality of life with less chemo afterwards. The thin skinned, unprepared, or shrinking violets will not get this worm.

The real deal is how far are you willing to go to stop metastasis before surgery, and during surgery. For example, did you use cimetidine early on, continuously, if you are one of the biomarked majority of advanced CRC that it can help reduce or even help stop metastasis? Or did you have a chemo program that you could use close to (+ a day or two), or even during surgery, that will shift the odds of success and prevention of metastasis ?

We must constantly challenge their assumptions, and thinking, even thwack medical egos, to prevent poorly or unfounded denials of life-saving treatments. The challenge starts when you do your own homework, search the medical literature, get more outside opinions and competitive offers.
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

User avatar
GreenMonkey
Posts: 336
Joined: Wed Jun 12, 2013 5:43 am
Contact:

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

Postby GreenMonkey » Thu Jan 23, 2014 8:47 am

Thank you Maia! Now, where to put this so I don't lose it. oh....perhaps if I copy all and put in a word doc.

I've got two spots on my lungs that they have been watching via CT scans since June. The good news is that my most recent scan (1/9) showed that the spots stayed the same size during chemo.

When initially diagnosis sloan wanted to treat my lungs first with 5 months of chemo upfront. I elected not to do that. I'd love to prove them wrong but I need to stay informed on my choices.

YOU are fabulous!!!
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED
greenmonkeytales.blogspot.com

User avatar
Mastan
Posts: 433
Joined: Sat Feb 19, 2011 11:12 am
Location: Albuquerque, NM

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

Postby Mastan » Tue Feb 25, 2014 7:16 am

Hello everyone,

Maia asked me to post my experience with the laser ablation thoracotomy here. I had the procedure done in Freiberg at the Univ Medical Center by Dr. Berward Passlick. I had the right lung done and I will come back to have the left done in a couple of months. This is a large Med Center that does many things among them is thoracic surgery. Last year they did about 1200 thoracic surgeries. They are very expert in thoracic surgery performing lung transplants as well. You can pm me with more questions.

Mark
Dx 6/2010 rectal CA

janderson
Posts: 679
Joined: Tue Mar 27, 2012 11:46 am

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

Postby janderson » Tue Feb 25, 2014 8:16 am

Maia, you are awesome. This is another potential weapon that I will keep in my war chest should I need it one day.
DX 10-05 stage IV
liver resection 12-05 Folfox1-05 to 7-06
Liver resection 8-07 Folfiri 9-07 to 3-08
Liver resection 12-11
Recurrence 2/7/2014, liver, chestwall mets, 16 rounds chemo
7/3/14, y90 radioembolization, steady shrinkage
12/8/14, cryoablation to liver and chest wall
6/1 to 6/26 SBRT radio surgery
7/2 more cryo ablation to right lung
7/16 lung infection drain tube installed
9/4 chest wall resection to remove 2 ribs

nkoske
Posts: 442
Joined: Fri Feb 22, 2013 2:00 pm
Location: California

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

Postby nkoske » Tue Feb 25, 2014 2:32 pm

rp1954 wrote:As for future availability in the US, anyone know how much the FDA new device regulations are a stumbling block like for foreign drugs, where years go by if ever ? NIH also stands for Not Invented Here.


[soap box]
I can comment on this to some extent as a medical device engineer for a company whose product is available in most of the EU, but not in the states. I'm probably biased...but my bias lies in the fact that I want to increase technology faster and the US system is designed against increasing technology. Increasing technology faster decreases safety, that's just simple math, but I think the overall good of technology outweighs the bad. On top of that I believe that if I make a decision and want something done to me and I've decided to release liability of the others involved I should be able to do that. Call me old fashioned, but I believe in liberty. I also do not place false trust that the FDA is going to keep me safe and therefore have no responsibility to make sure something someone does to me is the correct thing. The FDA just said trans fats are bad for you after papers since the late '60s have said the same thing (one of many examples). What's the saying fool me once shame on you fool me twice shame on me. Anyways...

FDA regulations are quite tough especially for new therapies/devices (stuff invented after 1976). It likely to get this approved in the states it would require a clinical trial. Clinical trials are incredibly expensive. Someone has to do the ROI calculations on whether to bring a tech like this to the states. I know right now many companies (even companies based in the US) are developing device purely for the EU because their regs are easier to work with. Then they hope to get acquired by a 'big guy' (J&J, Medtronic, etc...) to let them deal with the FDA. This is where the FDA actually hurts patients. Because the 'big guys' may already actually have a technology in the same space. It may not be quite as good, but good enough. So the 'big guy' isn't incentivised to develop/acquire new technologies because in the end they will just be cannibalizing the sales of their current technology. So US patients don't get access to the new technologies.

In a nut shell in the US the FDA focuses on both safety (does the thing harm the patient) and efficacy (how the thing works) and you need to prove both before allowed to market your thing. In the EU the regulators focus on safety. They leave the efficacy part up to the doctors judgment. Safety is a relatively easy thing to determine efficacy is much more challenging and typically requires large clinical studies. I'd say in Europe medical technology is 5 to 10 years beyond that in the states.

The even more frustrating thing is a technology could have been used for years and years in the EU and treated 10s of thousands of patients. The FDA could care less. The EU has similar adverse event reporting standards as the US does, so if a technology didn't work or doesn't work the FDA could find out, but they just don't care. They want to see a completely scientific study with controls. Which isn't a bad thing, but what data is better a couple hundred patient study with controls (where only the best patients are selected to enter the study) or the 10s of thousands of patients that have been treated in the EU with the same technology in a market release.

In the end the FDA is not in an enviable position, they get hammered in the media if they miss once. The fact they miss so little shows that industry really wants to do the right thing. Medicine is not a perfect science there will always be bad outcomes no matter what. Unfortunately the American public has gotten into their heads that if something goes wrong it's someone else fault and they must pay. So we get the system we ask for and will continue to pay more for less.

As far as going over seas to have stuff done...I would not hesitate. Germany is one place I'd go for a number of things. I went to Stanford to have my cancer removed because the surgeons at Stanford remove cancer everyday, the local guy does not have as much experience. There's a reason why everyone gets paid more when they have more experience, they're less likely to screw up and more likely to do things right. It's no different with doctors. The surgeons in other countries have been working with certain technologies years longer in some cases than their US counterparts, so I would expect them to be better.

[/soapbox]
Nick, DX @ age 34, IIIB Rectal Cancer 10/2012
ChemoRad IMRT 11/2012
Laparoscopic LAR 1/2013 (No Ileo)
Post Surgery Path IIIB (2/15 LN)
Chemo 2/2013 (XelOx)
Currently NED, Graduated from Med Onc 10/2017

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

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

Postby KWT » Thu Feb 27, 2014 5:10 pm

Bumping this up for gracelinedesign

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

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

Postby Maia » Sat May 30, 2015 11:01 am

bumping for DK37 and others.

User avatar
DK37
Posts: 510
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

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

Postby DK37 » Sat May 30, 2015 11:09 am

Thanks Maia!!
6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
7/12 FOLFOX/FOLFIRI
2/13 NED!
8/13 Enlarged lymphs - Stable
10/14 Stage IV. Lung & Lymph mets. 5-FU+bev
3/15 Cetuximab
11/15 FOLFIRI + bev
11/16 Signs of FOLFIRI resistance (Lymph mets)
1/17 Palliative radiation for resistant mets
2/17 FOLFIRI + bev + Maraviroc (off-label)
3/17 FOLFIRI + Erbitux + Maraviroc (off-label)
MSS-CRC Clinical Trial Finder: http://trialfinder.fightcrc.org/
2016 Colondar 2.0 Model
DK37 Science Posts List

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

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

Postby Maia » Sat May 30, 2015 9:49 pm

Videos playlist. Dr Rolle (Coswig, Germany), Dr. Passlick (Freiberg, Univ Medical Center), Prof. Pastorino (Istituto Nazionale del Tumori, Italy) are there. Warning: not in the first video (Rolle) but quite graphic, laser surgeries are shown on the rest of the vids.

WifeOfMike
Posts: 1495
Joined: Thu Dec 20, 2012 9:53 pm
Facebook Username: https://www.facebook.com/vbass123
Location: San Diego, California

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

Postby WifeOfMike » Sun May 31, 2015 1:06 am

I have seen many posts here on CT.
THIS post is one of THE Best option/ plans, for anyone with "Lung Thingies".

I only wish my dear hubby would have granted MY wish......
I would have GLADLY traded in some of our 35 years together's hard work/ savings & spent it on a trip to Germany & a shot at eliminating/ reducing his lung tumor load. He, opted to not spend so that his family would not want for anything when he was gone. It was truly the ONE time in our lives I hoped he would be a little selfish. I actually pleaded, to no avail and never asked again. It was his journey & I was but a loving co-pilot.

I truly believe in my heart of hearts, that this is THE best route at having a shot at the brass ring of extending LIFE and perhaps even better- becoming NED
I only wish that in this day of high tech/ information sharing..... that these Dr's would perform these miraculous procedures televised to other DR's worldwide so more would learn to be able to bring HOPE to cancer patients Faster & more efficiently/ proficiently. If I were a surgeon, I would offer my services free, to be able to assist the pros & up my abilities/ knowledge. I also wish they would bend the rules at the FDA, when it is a life threatening eminent ending, and allow patients the option to be part of experimental procedures here in the US using these procedures. It is our lives we are gambling with after all. Instead, we were turned down flat, multiple times at multiple clinics for different procedures. They only agreed at the last minute for palliative reasons & waited till the eleventh hour to say yes. Alas, it was too little, too late & in the "Blink of an Eye", that option was off the table.........Heartbreaking.

MAIA, you are my heroine! :lol:

Best wishes for anyone considering this option.
Vicki
Bad Ass WIFE
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS

behconsult
Posts: 264
Joined: Fri Jul 04, 2014 4:53 pm

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

Postby behconsult » Tue Apr 04, 2017 8:17 am

Thanks for this info. If I hit the lottery, I will be going there. I wonder if anyone has ever had insurance cover the procedure?
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
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 four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT

sdino
Posts: 85
Joined: Tue Mar 28, 2017 5:32 pm

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

Postby sdino » Tue Apr 04, 2017 9:15 am

Thank you for the **Bump**. I'm very concerned with my Wife's Lung mets (total 14). We have seen shrinkage on the colon tumor and some shrinkage on lung mets. However, the latest CT scan on 3/20/17 the mets have stayed the same in size and shape. To be honest that is currently my deepest concern. Both Oncologist at Roswell and Sloan have not addressed these yet ? Is it too early to address ? We have been thru 9 of 12 treatments of FolFox (Oxi) + Avastin. Thx !
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: 25+ Bilateral ranging 4mm-5.0cm
MSS, KRAS-G12D; TP53
iTCR TIL Trial NCT03412877 4/19 to 7/19 Off trial, - Sept. 2019 TIL trial NCT01174121
CT Scans: 7/2020 lung met shrinkage 36%, 3 lung mets left, two Liver mets destroyed by TILs
Brain tumor removal 3/2020
CEA:16-11/16; 5 -9/18; 63 -8/19; 1 -1/20; 0.8-5/20

stevieb
Posts: 410
Joined: Sat Feb 09, 2013 12:26 am

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

Postby stevieb » Tue Apr 04, 2017 11:25 am

My insurance reimbursed me after the procedures were completed.
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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot] and 112 guests