The Colon Club

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.

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.

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.

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!!!

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

Maia, you are awesome. This is another potential weapon that I will keep in my war chest should I need it one day.

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]

Bumping this up for gracelinedesign

bumping for DK37 and others.

Thanks Maia!!

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.

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!

Best wishes for anyone considering this option.
Vicki

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?

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 !

My insurance reimbursed me after the procedures were completed.