scan didn't go well

ColoradoDani

Our hearts broke yesterday...

My husband (age 48) was dx with stage 3B NSLC 2/11. He had radiation and chemo (etopocide + cisplatin) and was NED until this last scan on 2/21/12. He has activity in lymph nodes again, but no signs of metastisis and there's no tumor except the scar tissue, which is not lighting up on the PET.

We're devastated in that the focus moves from cure to management. He's EGFR positive and a good candidate for Tarceva, but he's struggling with this whole idea of being constantly under medical care and patching together a variety of treatments to keep going. He's not giving up--kind of the opposite--he looks and feels great and is skiing and hiking and having a hard time wrapping his head around the fact that he would have constant side effects to keep going.

I hope he goes for the Tarceva, but maybe I'm being selfish. I want him around for as long as possible.


ps: He did tell the oncologist about his cold, which he'd recovered from over a week ago, and the oncologist felt it would be fine to proceed. He doesn't attribute this lymph node activity to anything but cancer and was willing to biopsy it to double check, but we said no since our doc is one of the rock stars in lung cancer research and treatment, we trusted his take.

z

Colorado
I'm sorry for the lymph nodes looking like they have activity. I don't know if you go on the Inspire website, but theres a whole discussion topic for Tarceva Divas and Dudes, and all the posters relate how well they are doing on Tarceva and their side effects and remedies for them, very much information there. I hope you will check that out. The good thing is treatment is available to put your husband in remission. I wish you both well. Lori

AlanRinHBG

heartbreak
Dani, there are always bumps and left turns and unexpected surprises. As you probably have read here, many people have had great success with tarceva and alot claim it's their miracle. It's good to see how active he is and enjoying you and everything else he loves to do. Not much really for me to say, just wanted to respond and hope for you two to be happy.

ColoradoDani

AlanRinHBG said:

heartbreak
Dani, there are always bumps and left turns and unexpected surprises. As you probably have read here, many people have had great success with tarceva and alot claim it's their miracle. It's good to see how active he is and enjoying you and everything else he loves to do. Not much really for me to say, just wanted to respond and hope for you two to be happy.

Thanks
...for the comments. It does help. I think he's having a hard time feeling like his life is a giant science experience, so the words of encouragment with Tarceva and other treatments are really helpful.

AlanRinHBG

ColoradoDani said:

Thanks
...for the comments. It does help. I think he's having a hard time feeling like his life is a giant science experience, so the words of encouragment with Tarceva and other treatments are really helpful.

you're welcome
I understand those feelings, we all do. I met and had lunch yesterday with a man who is beginning his third different type of cancer treatment. What a guy. I feel guilty about complaining about my own troubles when I meet a person who has way more trouble than my own... and he's handling it with more strength and dignity than I've ever seen. I feel for all cancer patients and feel a special kinship with my fellow lung cancer survivors and their families and friends. The really important parts of life rise to the surface when we are faced with these things none of us deserve. you'll find peace.

Ex_Rock_n_Roller

While waiting for a 6-week repeat of my 2/8 scan ...
... I am so in tune with the last sentence of your second paragraph. If you're feeling good, active, and doing what you want (heavily into the hiking here), what do you say about maintenance chemo? Does it buy you time at the expense of quality, and if so, how much? If you "knew" with some degree of probability that you were going to gain, say, two months on the tag end at the expense of four months of doing what you want right now, what would you pick? There can be no easy answer, and I just have a nagging suspicion the oncos won't really be a help. They talk in probabilities.

I'll be interested in what he decides and how it works out. For all I know, I'll be doing the same in a month or so.

All power and strength to all of us and pass on my good wishes,
Steve

P.S.: Maybe we should book a hiking trip!

ColoradoDani

Ex_Rock_n_Roller said:

While waiting for a 6-week repeat of my 2/8 scan ...
... I am so in tune with the last sentence of your second paragraph. If you're feeling good, active, and doing what you want (heavily into the hiking here), what do you say about maintenance chemo? Does it buy you time at the expense of quality, and if so, how much? If you "knew" with some degree of probability that you were going to gain, say, two months on the tag end at the expense of four months of doing what you want right now, what would you pick? There can be no easy answer, and I just have a nagging suspicion the oncos won't really be a help. They talk in probabilities.

I'll be interested in what he decides and how it works out. For all I know, I'll be doing the same in a month or so.

All power and strength to all of us and pass on my good wishes,
Steve

P.S.: Maybe we should book a hiking trip!

Works for us
Well, believe it or not, the onco was extremely helpful--went way out of the box (at least I think so). He walked Craig and I through every scenario based on Craig's age and health status and didn't focus on the stats at all--and really, from the get-go, he's been so adamant that stats don't apply to individuals and only reflect trends of large groups. This is a pretty amazing doc.

So, scenario one was do nothing--travel and ski and hang out. The onco said this would be a terrific idea if you could just go to sleep on the beach in Italy one day and not wake up, but that lung cancer doesn't quite work that way. Craig would be in pain and uncomfortable for quite some time before "falling asleep." He also thought this was avoidance, and I'd have to agree, but I can understand why it's appealing to Craig.

Scenario two was to wait a bit and see what happens since he's got no symptoms--why should the treatment be worse than the disease? Wait until this wouldn't be the case.

Scenario three was to hop right on treatment.

We all thought scenario two made the most sense. Craig will re-scan in two months so we can determine how quickly this cancer is growing, then either continue for a few more months doing nothing or hop on that Tarceva wagon. We're really at peace with this decision. Craig is fit--skiing and hiking daily and has no symptoms at all. So, tomorrow looks like a bluebird day in Colorado, and I think the whole family will head to the slopes.

Steve, I so hope you don't need this info in a few weeks and continue with your current status, but there are many approaches, and we found the one that works for us. For now. And a hike would be great.

AlanRinHBG

ColoradoDani said:

Works for us
Well, believe it or not, the onco was extremely helpful--went way out of the box (at least I think so). He walked Craig and I through every scenario based on Craig's age and health status and didn't focus on the stats at all--and really, from the get-go, he's been so adamant that stats don't apply to individuals and only reflect trends of large groups. This is a pretty amazing doc.

So, scenario one was do nothing--travel and ski and hang out. The onco said this would be a terrific idea if you could just go to sleep on the beach in Italy one day and not wake up, but that lung cancer doesn't quite work that way. Craig would be in pain and uncomfortable for quite some time before "falling asleep." He also thought this was avoidance, and I'd have to agree, but I can understand why it's appealing to Craig.

Scenario two was to wait a bit and see what happens since he's got no symptoms--why should the treatment be worse than the disease? Wait until this wouldn't be the case.

Scenario three was to hop right on treatment.

We all thought scenario two made the most sense. Craig will re-scan in two months so we can determine how quickly this cancer is growing, then either continue for a few more months doing nothing or hop on that Tarceva wagon. We're really at peace with this decision. Craig is fit--skiing and hiking daily and has no symptoms at all. So, tomorrow looks like a bluebird day in Colorado, and I think the whole family will head to the slopes.

Steve, I so hope you don't need this info in a few weeks and continue with your current status, but there are many approaches, and we found the one that works for us. For now. And a hike would be great.

1,2,or 3
I agree that you're oncodoc is amazing. We hear so many of them talk about impending doom. His take on the stats is how it should be. Still a tough decision, but if the cancer is slow growing, a scan a little later might make some sense while you guys digest everything. Me, I would jump into treatment in a New York minute. Can you imagine the "scanxiety" when you've put it off for a few months? I would look into how Tarceva would affect my life right now.

Ex_Rock_n_Roller

ColoradoDani said:

Works for us
Well, believe it or not, the onco was extremely helpful--went way out of the box (at least I think so). He walked Craig and I through every scenario based on Craig's age and health status and didn't focus on the stats at all--and really, from the get-go, he's been so adamant that stats don't apply to individuals and only reflect trends of large groups. This is a pretty amazing doc.

So, scenario one was do nothing--travel and ski and hang out. The onco said this would be a terrific idea if you could just go to sleep on the beach in Italy one day and not wake up, but that lung cancer doesn't quite work that way. Craig would be in pain and uncomfortable for quite some time before "falling asleep." He also thought this was avoidance, and I'd have to agree, but I can understand why it's appealing to Craig.

Scenario two was to wait a bit and see what happens since he's got no symptoms--why should the treatment be worse than the disease? Wait until this wouldn't be the case.

Scenario three was to hop right on treatment.

We all thought scenario two made the most sense. Craig will re-scan in two months so we can determine how quickly this cancer is growing, then either continue for a few more months doing nothing or hop on that Tarceva wagon. We're really at peace with this decision. Craig is fit--skiing and hiking daily and has no symptoms at all. So, tomorrow looks like a bluebird day in Colorado, and I think the whole family will head to the slopes.

Steve, I so hope you don't need this info in a few weeks and continue with your current status, but there are many approaches, and we found the one that works for us. For now. And a hike would be great.

Well said
I actually sold my onco short when I made my comment about talking stats. He has never done that, even before I told him I had background in both bio and stats, so I wouldn't be asking him any "put a number on this" questions. What I really meant is that they talk *from* statistics (e.g. results expected based on cases that look just like yours), always allowing for the fact that everybody is different. Of course so do we all, in a sense.

That legalistic slice-and-dice aside, I like the way your guy phrased the three scenarios. Food for thought, and I would also very likely be favoring scenario two. Incidentally, that scenario is what I would consider to be statistical thinking on a certain level, the underlying stat, I suspect, being that waiting two months isn't likely to significantly affect overall outcome. Again, who knows, and it's a personal value judgment.

So, in general terms, where do you guys live? The wife and I are thinking about raising some dust on western trails as soon as I can manage it.

ColoradoDani

Ex_Rock_n_Roller said:

Well said
I actually sold my onco short when I made my comment about talking stats. He has never done that, even before I told him I had background in both bio and stats, so I wouldn't be asking him any "put a number on this" questions. What I really meant is that they talk *from* statistics (e.g. results expected based on cases that look just like yours), always allowing for the fact that everybody is different. Of course so do we all, in a sense.

That legalistic slice-and-dice aside, I like the way your guy phrased the three scenarios. Food for thought, and I would also very likely be favoring scenario two. Incidentally, that scenario is what I would consider to be statistical thinking on a certain level, the underlying stat, I suspect, being that waiting two months isn't likely to significantly affect overall outcome. Again, who knows, and it's a personal value judgment.

So, in general terms, where do you guys live? The wife and I are thinking about raising some dust on western trails as soon as I can manage it.

Coming to terms...
Well, the cool thing about our oncon is that he did discuss options with us--I would hope that all docs would do this so the person could do whatever felt right to them. He's coming around to the Tarceva idea, but it's so overwhelming to make these decisions when you're under duress, so it's nice that we don't have to. Steve, you're right about the 2 months--he felt like it wouldn't matter either way. 6 months would...

We live outside of Durango, CO. It's beautiful, a great place to visit and hike. Send me a message. Would love to meet you and your wife.
Dani