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Dad continues to improve


yvetten

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We went to the ONC appointment Friday and his words were "Another good scan!" My Dad's lung tumor and liver mets have improved (shrank)!!! When I asked what was next, though, the doctor said nothing, that he will rescan in one month and expects to see further improvement. No maintenance chemo, no tarceva, etc. He seemed really oppossed to tarceva, which I found odd. I also found it odd that he said there was no reason to believe Tarceva would work on my Dad. Huh?? I mentioned the never-smoker aspect and he said something like, "well that's true" and said we may try Tarceva down the road. What I don't get is why is he wanting to wait till the cancer grows before he goes to Tarceva> Why can't we have it now as maintenance?

Also, I hate hate hate that when he saw how happy we were after he told us the results, he said: "now, remember, this is uncurable and it will progress; we may have bought you some time with chemo, but that is all." What a jerk! I asked my Dad about it after the appointment and he said he pays very little attention to him when he says stuff like that. That only God knows what will happen. I'm glad my Dad's attitude is in the right place. Anyway, thanks for your well wishes and prayers everyone! We can breathe, for now at least.

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I am glad to hear the good news!

As to possibly why the onc is not giving Traceva yet, my parent's oncologist is waiting to give my dad Tarceva until he really needs it b/c if he gives it to him now for maintence and my dad really needs it later on, it might not be as effective.

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I'm so glad for the encouraging news on the scans and hope it always to be that way....

I used to use that word- "incurable" too (because our doctor ALWAYS prefaced the appointments with that caution) until I met so many suvivors CURED of their cancer. No, there's not a treatment program guarenteed to cure lung cancer, but people have been cured thru treatment, surgeries, etc.... THAT is what we hold onto until a cure-all is found!

"now, remember, this is uncurable and it will progress; we may have bought you some time with chemo, but that is all." What a jerk! I asked my Dad about it after the appointment and he said he pays very little attention to him when he says stuff like that. That only God knows what will happen.

I LOVE your dad's attitude. And he is right! Give him a hug for me and let him know that he and your family are in our prayers!!

Go DAD!

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Thanks everyone! And Katie, your words meant a lot to me . . .

One more thing I wanted to add: The onc said that it is possible that the lung "tumor" that is showing up on the CAT scan is just scarring, but that he cannot tell. I asked him if CAT scans pick up metabolic activity and he said no, that would be seen with a PET scan. I asked why not do a PET then? He basically laughed as if to say: "what's the difference, he's doomed." What he actually said was that PET scans are only done pre-operation and to initally check for mets. I found this whole conversation pretty disturbing for a few reasons: 1) my Dad never had a PET to begin with so now I am questioning whether they know for sure he has liver mets (if no metabolic activity shows on a CAT, how do they know his liver spots are cancer)? 2) why not do a PET so that if it is just scarring showing up you can tell the patient "there is no more active cancer in the lungs?"

I want to add that we did get a second opinion from UCLA and they confirmed NSCLC but they never rescanned, all they did was restest the tumor, which wasn't even biopsied (they tested cells gathered from a "wash" procedure). So, maybe a third opinion is in order?? When I suggested this to my Mom, she said, no, she was done getting "opinions" that noone could do anything for my Dad.

The more I think about the oncologists' comments the more I get angry. :evil: I think it's partly because we are dealing with Kaiser and they are soooo cheap that they want to do the absolute minimum amount of tests. It seems that they almost want the patient to die so they don't have to keep paying for the treatments. Anyway, just venting.

Anyone have thoughts on the PET/CT Scan questions??

One more questions (sorry for all the rambling): Kaiser did an MRI in September and all was clear. I asked the ONC if we need to do another one soon, even in the absence of symptoms and he said no, only if there are symptoms. Is this normally done? The old ONC (he was too doom-and-gloom so we changed him) said we should redo the MRI in three months (in December), so it makes me wonder.

Should my Dad also get a bone scan even though he has no bone pain? Is it possible to have bone mets with no bone pain? Aaargh! I am going to drive myself crazy with these questions!! :roll:

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[ yvetten ] ...when he saw how happy we were after he told us the results, he said: "now, remember, this is uncurable and it will progress; we may have bought you some time with chemo, but that is all."

With Stage IV that may be a correct statement technically, but SOME time may well be a LONG time. Your dad has amazed 'em in the past, and he can amaze 'em again.

Stable is a good thing, further shrinkage is even better. Your dad's perspective is right on -- enjoy the break along with him!

Aloha,

Ned

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I would want a PET if I were you. For my mom, they did PETs throughout the first couple of years, not as often as CT scans. She never had a bone scan as a PET scan would show the bones they said. She also had a routine brain MRI done often. That is how they found her brain anyerusm actually.

If you are interested in a third opinion, I worship the ground Dr Neil Barth walks on. He is at Hoag Hospital. Also, I heard that his prior associate Dr. Andy Jang went to Kaiser a year ago. If you want a second opinion from Kaiser, consider looking him up. He saw my mom once when she was in the hospital and he was really great.

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It seems that there is a standard protocal with certain stages of LC that some doctors and insurance companies follow in regards to testing. I am sure alot of that is from past experience, studies and statistics, and some of that is cost related to what insurance companies will pay for.

I learned this several months into my dad's diagnosis and treatment. He never had an MRI or a bone scan for 8 months when I read others had those tests initially at diagnosis for a base-line reference and determination of types of treatment.

Then I finally concluded that those who are successful in this LC fight are PRO-active. I insisted on an MRI and told the doctor my dad was having symptoms (he was not) but that was the only way to get him to order it.

It turned out to be good news on the MRI, but with the bone scan, it wasn't such good news for us.

I believe so much that the survivors here have had much success when they have a great attitude (like your dad) and a pro-active, positive and aggressive medical team on their side.

Lung cancer isn't a death sentence. For some it can be treated like a chronic disease, treating and eliminating problems and progression as it arises.

Go with your heart, talk to your dad and see what he says, and then talk to the doctor.

You are such a good advocate for your dad. Keep posting and keep us updated. I'm rooting for you both!!

((Hugs))

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