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Lung metastasis - any suggestions or advice?

BGNor's picture
BGNor
Posts: 29
Joined: Feb 2018

Hi all

Greetings from Norway!

 

I am researching options to what my oncologist has presented to me as treatment (which isn't the most promising). The only treatment I will be offered is more chemotherapy to hold the cancer back a long as possible. Not the best forecasts.

 

Quick background on my cancer - Colorectal cancer with recently 8 mets on lungs discovered:

- Adenocarcinoma in the recto-sigmoid area. Removed with laparoscopic surgery 2 years ago.

- T4aN2bM1 (no metastasis diagnosed at time of surgery, so originally it was M0)

- Chemo after surgery: 9 rounds of FLOX (5-fluorouracil, Oxaliplatin & Leucovorin). Similar to FOLFOX

- Cancer has spread through the blood, not lymph’s. Liver is fine.

- 2 years after surgery I have been diagnosed with 8 growing moduli on the lungs, 4 in upper left lobe, 3 in lower left lobe and 1 in the upper right lobe. 7 of 8 are very small tumors, only a couple of millimeters. 1 larger nodule, about 7 mm.

- No surgery or radiation(SBRT) to remove the tumors is possible according to the radiation and surgical specialists in Norway (too many suspected metastases and too distributed across the lungs).

 

I know there are a number of treatment options out there, such as proton therapy, cyberknife, nanoknife, regional chemo etc. These are not available in Norway currently and I am hoping any of these could help or improve my condition.

After researching this a bit online, I have found 2 possible solutions:

  1. A new round of chemo to suppress and possibly remove some of the small tumors/nodules in the lungs and Cyberknife treatment to the rest. Then possibly surgical resection of anything left.
  2. If the my cancer has the MSI-H characteristics I could benefit from Immunotherapy using Keytruda. The Keytruda drug has not been approved for CRC lung metastasis treatment(will have to dig into my own pockets for that), but promising results have been obtained.

 

If anyone has any experience or input or suggestions to me that would be greatly appreciated.

 

 

Best regards, BG

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I have four mets in my left lung. I am not a candidate for surgery because I'm on blood thinners and had a previous serious blood clot. I will be on chemo for the rest of my life just to keep it under control and my doctor says I have about 8 or 9 years left, but of course they don't really know. I live in Canada and I'd like to have the ablation done for the mets but they don't do that here in Canada and we don't have the means to send me to the states for it.

My colon tumour turned out to be vulnerable to Vectibix when they tested it so that's what I'll be on twice a year. It's an immunotherapy chemo. I wonder if Keytruda is similar? It worked quite well for me.

Jan 

BGNor's picture
BGNor
Posts: 29
Joined: Feb 2018

Hi Jan

I assume your oncologist/physician has looked into multiple options, but one thing that strikes me is that you could be a candidate for Cyberknife treatment. That's a non-invasive treatment that would be suitable for patients that can't have (or run a great risk with) surgery. Maybe this has already been considered for you. Just thougth I'd mention it - sometimes we need to push things ourselves to have procedures done. I guess Canada and Norway aren't that different in this respect. I know that Norway will in some cases pay for tretment abroad, as long as it's a proven/well documented effect. I don't know how Canadian rules for this type of procedure is.

The Keytruda is a quite new immunotherapy that uses PD-1 inhibitors to enable T-cells in the immune system to kill cancer cells. So it's a bit different from Vectibix. Keytruda will only work on certain types of cancer cells and from what I understand only about 10% of CRC cells are of this type. But if they are, I have read pretty encouraging results. Norway hasn't approved it for CRC metastasis treatment yet, so we may end end up paying for that ourselves. 

I see that Vectibix can be an option here Norway. I will check this with my oncologist. Thanks for the tip.

Keep figthing and keep spirits up.

BG

 

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks BG! Cyberknife, hey? I'll ask my oncologist when I see her on Thursday.

Jan

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

If possible, what kind of CEA, CA199, MCV, ESR and LDH did you have at diagnosis, post-surgical nadir, and now?  Also peak MCV on chemo is important.

In other countries, the Rolle laser technique (Germany) has been used to remove up to 100 lung mets.

Are you able to make supply runs or connections to pick up supplies elsewhere for supplements and cheap generic drugs not available in Norway? e.g. US, India, etc 

We were able to stop and cut out some mets, then slowly reverse metastases with cheap drugs and supplements that aren't common in many countries but are not especially difficult to use, even without continued medical support. 

Our experience is that it is possible to use cocktail approaches that are far nicer, and have exploitable advantages e.g. use around or during surgery, antimetstatic, use longer than conventional chemo before they stop working.

BGNor's picture
BGNor
Posts: 29
Joined: Feb 2018

Thanks. Lots of good tips.

At present I only know that my CEA is within the normal range and that it never really was very elevated. I don't get any printouts of my bloodtests, but I know that I can have them if I ask. I will get those the next time I visit my oncologist. 

I looked up a little on the Rolle laser and that sounds really interesting. I will definately look more into that. Thanks again for the good tip.I am able to go about anywhere to get drugs an other supplies, so if you have any spesific tips that be worth checking out I would be very grateful.

Many thanks, BG

 

tstrawberry
Posts: 1
Joined: Feb 2018

My husband started with colon cancer in 2012 had the 6 months chemo and for a year looked fine. Showed up in 2014 in lungs after a biopsy. Chemo was making him miserable and looked bad each time we had a scan. I researched a lot of hospitals, doctors etc., and one night located EnVita Medical in Arizona. We decided in 2016 to go as they test your blood with the chemo to see what works (sent blood to Greece and another lab) We found a lot of interesting things out about his cancer. We went there for 3 months and during received immune boost, and radiation from a fantastic doctor. When he came home he was able to start on Stivarga and has been on it for one year with good results except he is tired a lot. I would rather have a tired husband than lose him.  He obtains a scan every 2-3 months and we are holding it down for now. With all I know we are not finding a cure only a submission of the disease. I pray for all who have died, all who fight with it and most of all the ones yet to be told they have it. 

Travelmom's picture
Travelmom
Posts: 14
Joined: Dec 2017

Wow..glad to hear he's still alive in well since 2012! I never heard of Stivarga. What exactly is it? No Folfieri? I am stage IV Colon with mets to lungs. Doc says no surferscause they're small and shrinking due to treatment. Never know what's arnd the corner tho! Thanks for sharing.

Travelmom's picture
Travelmom
Posts: 14
Joined: Dec 2017

Doc says no surgery..*

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