Colon Cancer with Lung Mets

If it isdoable for you I would also get opinion on lung mets form The Lung Specialty Hospital in Coswig Germany for Rolles Laser surgery.

More details on your case would be helpful to readers.

I am guessing you had colon resection?

If so, what did path report show?

 I am male, early 60s and now in my 10th year of dealing with Stage IV CRC.  I have mets everywhere - spine, lymph nodes, lungs.  I also have the KRAS mutation, plus it is MSS.  Initially I had one met (that was seen) and had part of my left lung removed in 2016. When I was DX, the 5 year year survival rate was about 10-14%.  

Then I had the cancer spread throughout my lungs, spine and lymph nodes.  In 2017 I was told it was inoperable and incurable.  I currently have about 6 dozen tumors in my lung (not a typo), 6 places in my spine and in lymph nodes.  In 2017, immunotherapy for KRAS MSS CRC was not available as an option- it would not work based on KRAS and MSS.  But I was told research had started and looked to be accelerating. 

In 2020 I was on Lonsurf, which worked to keep my cancer in check for 18 months.  Lonsurf was not approved for CRC until a year after my initial diagnosis.  

Fast forward to 2022 . I had my spine surgery, then some radiation on my spine. I then started my 4th drug trial.  Immunotherapy .  And it worked.  My cancer shrunk or remained stable.

Most of the time I do not even notice my lung mets. I have gotten upper respiratory infections since I was a kid, so I feel a bit short of breath at those times. But I am not sure it is worse than pre-cancer. When II started my 4th trial, I did have some difficulty breathing because a possible side effect of immunotherapy is inflammation. My lung tumors and lung were inflamed. Some signs of tumors are coughing up blood or having difficulty breathing. Note that some blood may be just normal irritation and difficulty breathing could be allergies. It is natural to think “Oh no, it is cancer,” when it may not be. Usually you will be scanned every 3 to 6 months depending on your situation and they will see the lung tumors before you will feel them. I would guess you are every 3 months at this point.

And as of a couple months ago a new treatment for CRC was approved by the FDA.

I started exercising in 2017 to stay healthy, and finished a half marathon a few months ago.  (I am not an athlete type ;) )

So basically there were three things that I benefitted from which were approved or researched after my diagnosis.  The stats are based on general things and are usually on a look-back basis.  Meaning that stats released today are probably inclusive of results up to a few years back.  Things change (improve) and everyone is different.  Research and results seems to be accelerating since I started.  Try to remain as positive as you can, though obviously there will be down days.  Try to avoid the internet “doomsday” information or snake oil pitches.  It does not help.  

Learn as you go along and ask questions.  Find out if you can get genetic testing on your cancer - it can show what treatments may work. Try to remain positive and try to keep moving - doesn’t have to be running, walking is fine.Post here whenever you need advice, need to vent or anything else.  A lot of good people here.

I am glad it helps :). Golf sounds great, walking around outdoors sounds like a perfect combination. Tired is part of the game and can vary depending on the treatment.

You will get used to when it is normal tired where it is getting past the inertia to start moving. There are times where it may take me an hour to get psyched up enough to put on a pair of sneakers and get on the treadmill, but it feels so good when I finish.

This is in comparison to the really really really tired and it is better to rest. My immunotherapy does knock me out. It is only once a month, and there are a few days during each cycle where I just sleep. I feel guilty about being lazy, but after the really really really tired stops, I then realize I was not lazy. I try to remember that when I hit the tired spots to limit beating myself too much mentally.

Listen to your body and do not get into the “no pain, no gain” headset. For example, if you walk 20 minutes a day it will be better than trying to run when you are not up for it and injuring yourself where you may be sidelined for awhile. Another thing that works for me is being a bit selfish (for lack of better word.) When I was on FOLFOX I found myself going to the local place for a cup of coffee and some cake or pie. Things I did not normally do. Helped me feel good getting out and about. Binging comedies are also a go-to for me.

Anyway, looking forward to reading your reports on how your golf game is improving.👍

That is great, regardless if the backend dropped off a bit. 12 minutes on a stepper and a round of golf sounds sounds like a good day of exercising. Then to throw another mile of walking on it, well done. As you keep doing that, it starts building and becomes easier to get up and go on the borderline tired days because of how you feel when you are done. Well, at least that is the way for me.

I have been lucky with my lungs. Other than pneumonia (most likely from surgery, which is not uncommon) and some infections, no real issues. I do not recall any scan report mentioning pleural effusion.

The oxaliplatin mainly caused neuropathy and I still have it. Keep an eye on it as you go. It apparently is something that is incremental then accelerates. They stopped the ox for me when my neuropathy did not totally resolve between treatments. My doctor at the time said he would not use it for 12 cycles because the risk of neuropathy was too high and that the incremental benefit between using it in 9 treatments or 12 treatments was somewhat negligible. (He said he liked to get at least 8 treatments in with it.)

It also caused cold sensitivity, which could be painful to the touch, but not the pain you are talking about. Some of my other treatments and drug trials did cause pain and muscle issues. So did my radiation treatments. It may be due in part because of dehydration or my spine tumors, but I also got some severe spasms/cramping. But not when I was on FOLFOX or FOLFORI. That is another place where I got lucky, my side effects have been relatively low compared to what people have had.