The Colon Club

I recently had lung surgery on my left lung in Germany to remove what I had hoped were the last signs of disease from my body. I had surgery on my right lung in November. Based on a CT scan taken at the end of January all looked well and I was given the go ahead by my doctors here in Canada and by the doctors in Germany. However, when the doctors in Germany opened me up they found further spread to my lung plura and to some local lymph nodes. This additional spread DID NOT show on the scan in January. The doctors were shocked, as was I. It was totally unexpected and the doctors in Germany had never seen something spread so quickly. I don't know if the spread was there in January, or if it had spread within the last month after the scan. As you can imagine I have had a nightmare of a few weeks while recovering from the surgery and being away from home. I just got back from Germany this past Saturday. I forwarded the report from Germany to my Oncologist in Toronto while I was in Germany. He seemed to suggest that I'm looking at Folfiri and Avastin. Which, is what I expected. It took me a while to post this update as I was dealing with this turn of events and I didn't tell some members of my family until I got home. This disease is incredibly sneaky. I was feeling very good going into the surgery and didn't have any signs of such progression. All of my blood work was good, everything looked good. My CEA has always been normal. I now anticipate chemo for life, but hold out hope for something better....as I think all of us do.

Any thoughts, encouragement or suggestions is greatly appreciated. No one can really understand this except for those who are also dealing with this awful disease.

I will say that Dr. Rolle in Germany has done so many wonderful things for people who are not given any hope. I do not regret my decision to seek a surgical option. My tumour burden has been reduced, which will hopefully help in the long run. Dr. Rolle has provided long term remission to so many who didn't even have a shot according to their doctors. It is amazing and I do recommend his surgery for those who qualify. He is a very caring and compassionate doctor, unlike many I have come across. He was visibly upset about my circumstance, but did offer me hope and kind words to keep me strong.

cb

I'm so sorry to read this news. You're right this is a sneaky disease. Unfortunately, we never know where it will pop up next. The most frustrating part is that all your testing came back fine. I still think having surgery and reducing your tumor load was a good move. I wish you the best going forward.




Ann

Carmen,
It's good to hear you're home with your family, I hope your doc. Can come up with something that works for you. I'm thinking more and more about the cannabis oil.
Kenny

CB, I wanted to let you know i'll be praying for you. I'm glad you are now home, sounds like Dr. Rolle is a wonderful doc and i have no doubt that you did the right thing. You gotta try, and you did. Now go kick it some more with chemo. Please keep us posted on your protocol.

Rob

I'm so sorry that the cancer had spread more than was thought! You're in my prayers. Folfiri is one the easiest chemos I've been on. I had headaches and nose bleeds on Avastin so I don't do that. I've had two tumors killed and shrinkage on the other two tumors while on Folfiri so there's huge hope for you that it will do for you what it's done for me.

God bless ~
Guinevere

I am so so sorry about this news Cb75. you will be in my prayers.

Cb75 wrote:Any thoughts, encouragement or suggestions is greatly appreciated. No one can really understand this except for those who are also dealing with this awful disease.

Sending POSI +++++ Vibes for moving ahead with a plan Carm, and swinging chickens for you !

If you are at PMH in TO, they do have some top lung specialists and with pleural / node involvement they might also look at some ideas which would also be used for a mesothelioma patient ( photodynamic therapy, other "nukem" methods IMRT, SBRT, microwave / laser ablations ) to complement the open surgeries you have had. Nothing wrong with getting some chemo going as well. Maybe check with lohidoc and Maia as they may be more up to speed with what is current in the Ontario scene.

Another point you might want to follow up on with your docs here and in Germany : if they got caught by surprise with the imaging missing active disease .... what would be their new recommendations for more current imaging now to keep track of things and for follow up ?????
MRI, enhanced CT, PET, PET added to enhanced CT or PET/MRI ????
You might want to push them on this point so things do not get missed again moving forward. They know something is there and now they need to find a way to assess it in situ without you having to have more surgeries.

Sincere best wishes for you moving forward
CRguy

Carm, you know I think is WONDERFUL that you have now less tumour burden (and thanks to surgery, nothing less). Reality is what it is, and it's better that you've found out what was going on (and that Dr Rolle took out a lot of it... that's not so clear in your post, I think). Knowledge is power. Maybe with a little chemo, or other strategy, but I'm positive you'll get to NED and you'll find your own strategy to keep in that status.
((((hugs)))

Carm
After all your hard work in getting the info, going to Dr Rolle in Germany, having one lung done and having so much hope you must feel pretty dashed at the moment.
I want to give you some positive words but do not have any to give, so I give you my best wishes, my thoughts and hope you can find the inner strength to pick up the pieces and pull through
Kiwi

Carmen,
I am so sorry to hear your news. I know that you were full of hope about Dr. Rolle getting rid of all the disease, because we were all full of hope right along with you.
I am still so proud to know someone willing to step out of the box and travel for such a surgery. I have learned that I am so miserable away from home that I'm not sure I could ever be that brave.
I hope your doctors find a way to deal with this discovery and find a plan that grants you lots of time -- blessed, pain-free time.
Best wishes,
Dianne

A few steps forward, a few steps back. One door closes, another door opens. Stay cool.

Carm, so very sorry to hear this update. Surely, not what everyone here expected to be "reported". Well, you've just went thru hell - physically, emotionally, mentally.... I can't even imagine how you woke up to learn the news and then to struggle with recovery away from home, on top of that. Now you are home, try to relux for a few days - just force yourself not to think about this whole ordeal - and then regroup. I am positive that this can be nicely polished up with Folfiri after the surgical reduction of the tumor burden. And the immunotherapy solution for colon cancer is coming within our time frame, we just have to hang in until then - no other choice but to hang in - give that task to every cell of your body.
Big hugs, Vilca

So sorry to hear this. You have already done so much with all the research and effort you have put into your treatment - and helping others by sharing your experiences.

I will be thinking of you and hoping that this setback won't take you off the path to a full cure that you have so determinedly been following.

Sophy

I know everyone is unique, but my father had something a bit similar. One met seen on liver ct-scan July 2013, during operation 6 (small) were found. Considered very aggressive, only chemo possible, hopefully 1-2 years. It's only 9 months since then but he responded very well on chemo, had a operation (all removed tissue was 100% dead) and is currently NED. It will come back, because some tiny mets were not discovered, but this period is wonderful and unexpected.

However the news we had 9 months ago was, after the first diagnosis, the most horrible we had. We were devastated and I just can't think back about that phone call from the surgeon. But you continue breathing, day by day. Here we are still alive and doing relatively well. It's not carpe diem here, but we say 'you should't die before you're dead' (in another language however, so the true meaning is not reflected I guess).

Wishing you all the best!

I'so sorry fot these uexpected bad news, my story is so similar... I really do partecipate your feelings.
Did dr. Rolle remove pleura met and the nodes he found anyway?