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Got PET scan results today...

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

...And not what I really wanted to hear.Appears my cancer has metatisized to lungs. Multiple 5-7mm nodules in lungs all new compared to my last scan. Most have mild FDG activity with a SUV max of approximately 2.
Onc basically said I'll be on indefinate chemo. Had already done 12 rds of 5/fu and now wanted to put me on folfuri (sp)

Man Im getting scared now, thought after having rectum removed I was doing better (and was, back to work ect) and now hit with this!
I told him no offence but I wanted a 2nd opinion so they are scheduling me a apt. for MD Anderson in Houston.
Dont know if they will tell me anything different or not. Has anyone gotten any different/better results by going there for a opinion?? Looks like I'll be be joining the lung forum next now to.

Annabelle41415's picture
Annabelle41415
Posts: 6249
Joined: Feb 2009

Sorry to hear that it has spread. It's good that you are getting a second opinion as they might have a different approach that they want to try. Maybe there is a chance that you could have surgery to remove it.

Kim

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Kim, I asked him about that or radiation but said could not this time is not just one tumor in one location. Though small but there are several in different locations. Have to wait n see what the folks at MD Anderson suggest.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hey Kenny

If you don't like what MD has to say....drive north up I-45 260 miles to Dallas. I go to UTSW and we're the MD Anderson of North Texas. We kick *** up here every day of the week and I point to myself as an example of exemplary care.

We've got the top-rated hospital in the metroplex and our cancer center is an NCI facility now as well.

My surgeon is rated in the top 3 for cardiovascular and thoracic surgeries. I've done 2 lung surgeries with him and trust him implicitly.

You can visit the lung forum, but that's mostly for primary lung cancer. I think you'll find good knowledge and help right here where you are at - especially since it's colorectal mets to the lung.

Myself, Phil, and Chip have all done 2 or more. I'm available if I can be of help to you.

Recurrence is a tough thing and why I think the real battle of cancer is fought right there; that's what makes cancer so tough. I've had 3 recurrences myself in 7 years, but I'm shining bright as ever. I worry about a 4th time, but know I've got one of the best medical teams that this country has to offer.

I know most of us think that it will be a one-time thing and then cancer will be a memory. I've seen in myself and through many others, where that is not the case. That's why cancer is so difficult - it's relentless in its pursuit.

But, you're on it early and the tide can be turned back....look at me, man. I've done it 3x now and 2x as a stage 4....it can be done.

I can get you my guys name is you need it. I'll be happy to PM it to you if you want to come to Dallas. You wouldn't be sorry, I can tell you that.

Take care and let's get ready to rumble!

-Craig

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I went to MD Anderson for my 2nd opinion. At that time I had 20+ mets scattered all over my lungs. They gave me less hope than what I got at home. Not trying to bum you out here but don't want you going there thinking because they are the #1 rated cancer facility that they have "miracle" answers. They do not. I left there with my heart stomped on. Reality smacked me in the face. But it put fire in my veins...and that was really the boost I needed to say "bet me.... I'm gonna the be the 1 that pulls thru"

I started Folfiri immediately and within 6 months.... I was NED. NO tumors anywhere in lungs! I have had a few recurrances since then.... all in my lungs...but when 1 pops up... I use Cyberknife to wipe it out. I have never had a cold knife surgery on my lungs.

I started a different drug a few months back called Vectibix. It has little to no side effects and does not touch your immune system so I was really hoping this drug would work for me. I just found out yesterday that it does seem to be working. Awesome news!

Wishing you best of luck with MDA and I say give that Folfiri a chance... It worked great for me...and many others. You take care.

Jennie

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Was thinking of you.
Am sorry you got this news! I would imagine it's only what could be called demoralizing...understatement.
However, as you can see, there is plenty of hope here and people who have come through it to tell you--fear not. It will be okay. Hard at first, maybe esp. getting used to the idea, but the procedures sound less invasive than most of us experienced.
You can do this. You can get through this. You are not alone.

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Thanks Craig, Jennie, Tommycat.
Ya it hit me like a ton of bricks today and Im thinking also at MD I'll just get the same news. Good to know the folfuri really worked. But did you have to stay on it it? Onc scarers me with "indefinate" chemo. And at such an early stage.

Lovekitties's picture
Lovekitties
Posts: 3332
Joined: Jan 2010

So sorry to hear that your news was not good.

Don't worry overly much about the 'indefinate' chemo. You may have excellent results with it. You know how stats are...just remember you can be on the up-side of those stats and be very successful.

Praying that treatments lead to better days for you.

Hugs,

Marie who loves kitties

laurettas
Posts: 372
Joined: May 2011

So sorry to hear that your scan was not a positive one. The one good thing is that you have lots of examples here that show how to just take that new burden on your shoulders and travel on down the path. Many good stories of chemo shrinking tumors down to the point of being surgically removed. Will pray for good results of Folfiri for you.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

kenny ask about ctc's i'd be interested what md andersen say.

see my post on it.

dam sorry to hear about the met.

just good luck.

hugs,
pete

ps i just posted this about lung mets
http://csn.cancer.org/node/231496

taraHK
Posts: 1961
Joined: Aug 2003

sorry to hear this news. I think it's great and very important that you are seeking a second opinion. They may not have "better" news/plan but at the very worst you will get confirmation of the current plan, which can be reassuring (for me, at least). Agree with previous comment that you shouldn't necessarily abandon us (!) for the lung cancer board. I'm sure you could get some great advise/support there but there are also folk here who have experience with colorectal cancer lung mets. Like me! 3 times! I can certainly understand why "indefinite chemotherapy" is bumming you out at the moment. Not the news anyone wants to hear, no matter how sugar-coated. But I am one of those -- as I prefer to call it -- 'chronic disease model' types. I will probably be on/off chemo for the rest of my life (let it be long!). I'm coming up to my 9th anniversary since diagnosis - yea!! I've had several surgeries and been on/off chemo but been fortunate to tolerate chemo reasonably well and to enjoy the non-chemo times immensely. I am currently on a "chemo break" (my onc and I both fully accept I'll be back on chemo again). During this period I've already hosted family and other visitors, travelled, and thrown myself into a major work project (woo hoo!). I don't mean to come over as a complete Pollyanna -- but it's do-able. I'm with you - -and others too.

Tara

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Tara. Wow thats a long time to go NED then have to go back on it. Do you have bad side effects from the folfiri?
My Onc said would not have the cold sensativity like 5fu but would gets lots of diarrea. Since I have a Ostomy bag now that will be easier to deal with than running to a toilet all the time i guess.

Pete: I'll ask them about that while there. I like what your doing and will be folowing your progress.

Thanks everyone for your input on this and no Im not "abandoning" the Colorectal board as I have more of you I can relate with in here and also getting the most info from here.Ive been riding this beast so long with all of YOU. I may not post alot but Im reading all the time.
Kenny.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Tara

Please forgive me:)

How could I have forgotten about all of those lung surgeries you did? I'm sorry. I blanked out when I was talking to Kenny.

I won't forget you the next time:)

-Craig

sasjourney
Posts: 395
Joined: Jul 2010

Hi Kenny,

I went on Folfori for a reoccurance in lymph nodes and it completely worked for me. I am on Xeloda now as a maintenance. I also went to MD Anderson for a second opinion and was completely disappointed. I may have just gotten a bad doctor as I am sure there are some brilliant ones there, but he offered no hope, suggestions, or recommendations. I was completely shocked! I then went to the extremely brilliant Dr. Lenz at USC and have followed his recommendation.

You can get through this--keep battling this beast.

Hugs,
Sara

relaxoutdoors08
Posts: 520
Joined: May 2011

Kenny,
Sorry to hear the news. Glad to read the support from others who have been there before you. Prayers for a good plan and good results. Thinking of You.
NB

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

FOLFIRI worked well for me and many other people I know to get things back under control after spread. Even if you don't qualify for surgery or radiation now, it doesn't mean that you won't ever qualify. If you have many small spots, the chemo might take enough out for you.

It is always good to get a second opinion to see if someone might through other options out to thing about. Please update us after you get the second opinion.

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

I'm so sorry to hear about the mets. I hope getting a second opinion brings you a clearer understanding of what is going on and some peace of mind.
Karen

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