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Progression and switching to Tarceva

stand4hope

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stand4hope

stand4hope

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Unfortunately, hubby has progression, especially to the bones. I haven't seen the written report yet, and if we get it tomorrow, I will add to this thread with more info.

We saw the CD before he got the call tonight, and we both knew it was coming. It seems to really want to attack the pelvic bones for some reason where there are several new lesions. He has two other new ones which were circled and measured. One looks like it's in the trachea, which according to the measurements on the cd is about 2 cm, but has a low uptake. The other new one (other than the pelvic area where there are quite a few) looks like it might be in an adrenal gland, but, of course, I can't be sure because the film doesn't define the location, just the size and uptake. One of the new ones in the pelvic area, which wasn't there at all in September, was circled and measured: 60 mm long and about 25 mm thick. I'm not good with the metric system, but I think that is about 2 1/2" by 1". The uptake on that one was 5.13.

The onc said he called the cardiologist about the echo doppler for the pericardial effusion and his recommendation was to hold off with treatment for now.

I'm sorry I haven't been posting, but I am pretty self-absorbed right now with all this, and also some issues with our son. I'm not a happy camper, and just not a very good encourager at the present time. If you have my phone number, as sweetly as I know how, I ask you not to call. I just can't talk about this. Please don't think I'm flat-on-my-back depressed, because I'm not. I just want to deny that any of this is happening and don't want to talk about it. Is that fair?

The onc suggested Alimta, however, he was supportive of Tarceva, too, if we want to try it. We are going to call tomorrow and go for the Tarceva. Like I've said in the past, the most important thing to him is to get in some good bike riding this spring (motorcycle). We know there is a good chance that this disease could get the best of him or that the Alimta could knock him out of another spring of riding like last year, and quality of life for him right now is extremely important.

I will update this thread tomorrow if the written reports say anything different.

I love you all, and thanks for reading this way too long post. Please forgive me if I don't post much for a while.

Love,

Peggy

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ginnyde

ginnyde

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Peggy,

I sure wish I had some magic words to make this all disappear. Just know that I am thinking about you and praying that whatever treatment the onc thinks is right allows Don to feel the wind in his hair and for you to breath more easily.

This just stinks Peggy, I am aching for you right now.

Love,

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karen335

karen335

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Peggy,

I don't mean to sound stupid here. But maybe you can explain

to me about uptake. I read a lot of people talking about it, what does

it mean. Also, I have a friend here in town who was on Tarceva

for two months. Said the rash was just horrible, he said it was the worst between his legs. Hospital took him off and put him on antibiotics

for the swelling he was getting from the rash and he said it also

affected his breathing. He was on 150mg. Maybe 100mg would be

better. He said he thinks it did shrink the tumor.

He is going back to his onc. and mine too on Monday. Lots' of

prayers for your hubby that this will work.

God Bless, prayers and gentle hugs,

Karen

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stand4hope

stand4hope

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Karen,

Uptake is expressed in SUVs (I forget what that stands for) on PET scans. Anything over 2.5 is usually considered malignant, however, there can be false positives in PET scans, particularly with internal organs that maybe have infection or other problems (scar tissue, etc.)

The bone mets are pretty easy to spot. I know the technicians see them in 3-D color. It's like spinning your body around in a circle and they can see right though it, and mostly all that shows up are these hot spots. The heart, kidneys and bladder always look hot even in normal scans. The bone mets, on our CD, which is in black and white, look like big black dots on the bones - pretty much like a bone scan. The only thing different that we see is we can't see the colors. Uptake will also show up if cancer is any organs, including the lungs, adrenal glands, etc.

There have been several on here that have also had the severe side effects to the 150 mg. Tarceva. Justakid comes to mind, and I think Fay A. has some pretty potent side effects, too. We're aware of that, but since he's been on Iressa, which is very similar, and he has tolerated it well, we're hoping that 150 mg. Tarceva side effects will be tolerable. Ry's husband (Mr. Ry) switched and had more profound side effects after switching, but the last I heard, I think they have calmed down.

There have also been some great reports about positive effects (Bill's wife and Fay A.), so we decided to go this route, for a while, to see how he does. It's stronger than what he's taking now, so we're hoping it will kick the cancer back some. We know the Alimta would probably put an immediate halt to him riding his bike, even if he didn't have any side effect except fatigue, so we just decided to do it this way for now. I think the onc will probably re-scan in 60 days or less to see if it's working. If not, we will do Alimta then.

Thanks for bringing up those two points. They were good ones, and I appreciate it.

Love,

Peggy

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Fall54

Fall54

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Dearest Peggy,

As you know I have had to stay away to keep my depression in some sort of order but do peek in every once in a while to see how friends are doing. I was very saddened to hear about your hubby's progression. You were always there for me and I just wish there was something I could do for you besides praying as I always do, and never forget my friends here. I certainlly understand your needing time away and your privacy as you absorb what is happening and deal with it the best way there is. I am sending all the positive vibes I can in this typed message and through the power of God to help your family.

My love and prayers,

Jane

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Nushka

Nushka

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Peggy,

This does stink. I am so sorry you got bad news this time. I know how much this spring time means for your husband and his riding. I will be praying that the tarceva works better than the iressa has and that the side effects are such that he can tolerate them and still ride that wonderful bike of his.

I certainly understand about the privacy issue. I would be the same way. Just know that we are all praying for you both and that you are in our thoughts often.

Nina

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Elaine

Elaine

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Peggy

I am so sorry to hear that you are struggling right now. I think of you all the time. I think it is a wise decision to give Tarceva a try. I know how important it is to have time that isn't filled with Drs and side effects that get in the way.

I know what you mean about not wanting to talk about it. Let us know what we can do and remember that we are here when you need us.

love and fortitdue

elaine

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kimmek

kimmek

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Peggy

What do you say to the person who has been there for everyone, always a kind word or thought. You are incredible and it breaks my heart that you are dealing with this. I am so very sorry, take whatever you need, take care of your family and know we care.

Love,

Kim

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shineladysue

shineladysue

Posted
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Peggy,

I can feel your disappointment and fear, but I know you have strong faith. You take the time you need and know that tons of prayers are going out for you, your hubby and your son. Will be praying for the Tarceva to work it's magic for your hubby and for God to give you the strength to work through all that life is handing you now.

Love and Prayers,

Sue

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Bill

Bill

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Unfortunately, hubby has progression, especially to the bones. I haven't seen the written report yet, and if we get it tomorrow, I will add to this thread with more info.

We saw the CD before he got the call tonight, and we both knew it was coming. It seems to really want to attack the pelvic bones for some reason where there are several new lesions. He has two other new ones which were circled and measured. One looks like it's in the trachea, which according to the measurements on the cd is about 2 cm, but has a low uptake. The other new one (other than the pelvic area where there are quite a few) looks like it might be in an adrenal gland, but, of course, I can't be sure because the film doesn't define the location, just the size and uptake. One of the new ones in the pelvic area, which wasn't there at all in September, was circled and measured: 60 mm long and about 25 mm thick. I'm not good with the metric system, but I think that is about 2 1/2" by 1". The uptake on that one was 5.13.

The onc said he called the cardiologist about the echo doppler for the pericardial effusion and his recommendation was to hold off with treatment for now.

I'm sorry I haven't been posting, but I am pretty self-absorbed right now with all this, and also some issues with our son. I'm not a happy camper, and just not a very good encourager at the present time. If you have my phone number, as sweetly as I know how, I ask you not to call. I just can't talk about this. Please don't think I'm flat-on-my-back depressed, because I'm not. I just want to deny that any of this is happening and don't want to talk about it. Is that fair?

The onc suggested Alimta, however, he was supportive of Tarceva, too, if we want to try it. We are going to call tomorrow and go for the Tarceva. Like I've said in the past, the most important thing to him is to get in some good bike riding this spring (motorcycle). We know there is a good chance that this disease could get the best of him or that the Alimta could knock him out of another spring of riding like last year, and quality of life for him right now is extremely important.

I will update this thread tomorrow if the written reports say anything different.

I love you all, and thanks for reading this way too long post. Please forgive me if I don't post much for a while.

Love,

Peggy

Peggy :

Sorry to hear about the set back. As I just posted, my wife just had a PET scan and those results are due any day. Hopefully, good news for her will be encouraging for you guys and other Tarceva / Iressa users. She started Tarceva 150mg. on 3/3/05. Her significant improvement, as I had been updating, has held to date. A couple of the medical skeptics are starting to scratch their heads as enough time has now past that her improvement can no longer be explained away by hospital ICU heroics. So, I will report the PET results when released and we will see. This I will add. IF THE PET RESULTS DON'T CONFIRM HER MARKED IMPROVEMENT SOMEBODY HAS GOT SOME EXPLAINING TO DO. IMO too much overall improvement, esp. in respiratory function and range of motion ( hips ), for this to be a fluke.

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