Probable lung mets- scared

Lilmiss82 said:

Lung Mets

Hi I haven't posted in a long time but I saw you post and had to reply because I was in a similar situation 3 years ago minus the blood clots. I had three lung nodules in the left and right lungs. Dr said no surgery because I had both lungs with disease. I set out for a second opinion and was advised to try radiation. So I pushed for Cyber knife and it worked for 2 on my right lobe. The one on the left kept coming back so I was devestated and my option was chemo, so I tried it. I know chemo is not an option for you but maybe down the road it might be an option? I completed chemo but once again  it grew back, so I tried standard radiation and again it grew back. With no other lung involvement I again got a second opinion and 2 years had past by this time and surgery was suggested so this May I had an upper left lobectomey. I did do chemo 3 months before surgery and 3 months after. Again, I know you are not capable a doing chemo right now but I can suggest cyber knife as its less damaging as standard radiation and since it's so targeted it can reach hard to reach spots. Hope this is helpful:)

Thank you! I'm writing all this stuff down. I won't go into this uninformed. I feel great right now. And my CEA is 1.0. I'm hopeful that it's not cancer or will just disappear as a few people have told me happened to them. I even heard about a guy who has always been a heavy smoker who had spots on his lungs and had them removed because his doctor figured they had to be cancer and didn't bother doing a bipsy and it turend out they weren't.

I had a couple of bad days emotionally but now I'm ready to come out fighting. My next CT is Nov 16. Hopefully I'll get good news. If not I think I'll push for a PET scan next as well as a biopsy. They want to see if they've grown. I scar badly, they might groew and still be scars. Him saying they're round and that usually means cancer is concerning me but I'm still hopeful at this point. I don't want another Christmas ruined. The last one I was barely out of the coma and was still so sick.

DaveHereInFlorida said:

Even if it is,  getting on

Even if it is,  getting on FolFox 5 chemo regimen will attach those spots on your lungs just like it did mine.  There have disappeared.   I  hope yours will too.   This is a time of uncertainty for you and i remember the anxiety it brings ;  ive learned to throw myself into Gods capable hands and trust him for a good outcome .   Drawing close to him will give you some peace, hope,  and patience.

I've even heard of them disappearing on their own. My fingers are crossed. And congratulations!

PhillieG said:

RFA

Sorry to hear about your recurrence. The whole journey is nerve wracking to say the least. I've had several RFA (Radio Frequency Ablations) done over the past 7-8 years. I usually average 1 per year so I've had about 7-8 of them done. Prior to that I had wedge resections but after 2 of those I had too much scar tissue so we went the RFA route. 

My understanding if that depending on where the spots are located has a lot to do with whether or not they can do the procedure. I'm not 100% sure but I'm pretty sure that the further they are away from the center of your lung the better. It kind of makes sense (to me at least).

For roughly 6 out of the past 9 years I've been on Erbitux and Irinotecan which did a good job of slowing the growth of the spots. Of course, the rash and all of that wasn't a load of fun but over time it lessened quite a bit and personally, it wasn't a big deal. It was what I needed to do so I did it. For the past 2 years I've been on Xeloda and Avastin. Still doing 1 week on, 1 week off. I'm also on Xarelto, a blood thinner, because of a PE (Pulmonary Embolism) I developed maybe 3 years ago(?) so I'm not sure if that's important but I saw you mentioned blood clots so I'm guessing you've been on a blood thinner.

I can't say this enough but everyone reacts differently to treatments. That's not saying RFA's will not help you but it's no guarantee that they will either. It's certainly something to investigate for sure! As far as the procedure goes, it was a cakewalk for me. I went home the same day for every ablation except my first one. They wanted to keep me overnight to see how I did.
That's it in a nutshell.
Best of luck Jan
PM me if you want and I'll answer whatever questions I can answer.
-p

 Just a footnote here, on Sept 20th 2004 I did my first of about 5 surgeries. I had done 6 months of chemo prior to the surgery. Like many others I got the "6-9 months" speech. Here I am 11 years and 7 months later...Why so many "doctors" do that is beyond me. I really haven't done anything special except I was fortunate to find a great oncologist, I seem to have made good decisions when I needed to, drugs became available at the right time, I keep a (mostly) positive attitude, and have had a heII of a lot of good luck...

I know that many of us have been to hell and back, I've been no exception. While my health is far from being perfect I kayak at least once a week, usually more, I'm doing part-time work, I'm very politically active on a local level, and I enjoy naps! I have little doubt that one day the party will be over and I'll get hit hard - maybe by cancer or maybe by a truck. No one knows and I really try not to dwell on the "what if's" in life.

Bashakill Nature Preserve. NY

Thank you! I'm also on Xarelto for a pulmonary embolism and will be for the rest of my life. I'm concerned that the spots are not in an area they can do the ablation in. He said that if he were able to remove them he'd be taking most of my lung out. I've been going on the internet about this- I know, bad idea- but it sounds like often the spots aren't anything to worry about and can be kept at bay. I'm 52. I'm okay with not livng to be really old but I'd like to see at least 60. I have a daughter who is 26 and I'd like to see her married off to someone great so I dont have to die worrying about her. I'd like the dogs we have to die before me so I don't have to worry about them. And my horse has about fifteen years left in his life barring anything unforeseen and I don't want to worry about him, either. He's been with us since he was very young and he's my baby. He even visited me in the hospital when I had the blood clot and almost died.

Anyway, almost twelve years is fantastic! Thanks for the encouragement. If it means a lesser quality of life I'm okay with that. I can't emember what it's like to feel normal anymore, anyway.

DaveHereInFlorida said:

ok....

I had 4 small spots on my lungs....1 on the top and 1 on the bottom of each lung.  By the 3rd chemo treatment, they were gone .  Im on Folfox 5  treatment and it is doing remarkable good things on me ;    colon mass has shrunk to nearly nothing now and the liver mets  has been knocked hard  too.   No other spreading as of now.  Just had my 7 th  out of 12  treatments scheduled.    The side effects are getting worse  but i can put up with that .  Ill pray for your situation, but i wouldnt fall apart on whats been discovered so far with you.   Dave.    Stay close to God is my personal prescription ! 

Thanks Dave! I'm not sure if I;m still a candidate for chemo because the chemo is probably what caused the blood clot. I guess if it comes to that they'll tell me. I dont have the port anymore, though. And, yes, God is my strength. He got me through the blood clot when I had very little chance of surviving and the doctors told me I'd received a miracle. I have to count on that I'm still here for a reason.

Easyflip said:

Sorry Jan

about the lung spots. There is a clinic in Germany that takes difficult cases. Unfortunately you have to pay privately and I know it's not inexpensive. They also use some sort of radiation. If you're interested I can find the link And get it to you. Good luck!

Easyflip/Richard

Thanks Richard! I'd love to see the link but I know we couldn't afford anything costly. 

Easyflip said:

Jan,

let's hope those spots are benign. My friend that went to Germany saw Dr. Rolle. It was not covered by insurance and cost 12,000 euro per lung. She had a total of 16 spots. It seemed to work but unfortunately it has spread elsewhere, she's recovering from surgery now and is doing fine. Fingers crossed for you, it is odd to skip the liver and go straight to the lungs, let's hope it's nothing.

Easyflip/Richard

Thanks so much Richard!