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Wife's Tarceva Miracle Is Over


Bill

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I obtained my wife's latest PET / CT scan results this morning. She and I appreciate the ~ 8 to 9 months of dramatic improvement that Tarceva gave her. But, this latest 3/2/06 PET / CT rad report has confirmed my worst fears. Unbelievable. Excluding her brain ( which turns out isn't entirely tumor free ), based on her Oct. ' 05 PET / CT she was NED. Now, ~ 4 months later, her condition has completely deteriorated to include a massive re-invasion of nodules / lesions in both lungs, throughout her entire thoracic and lumbar spine, corresponding left side ribs, and entire pelvis with SUVs too numerous to list but ranging from 3.7 to 6.4. She's willing to speak with her med onc on Tuesday but her quality of life is so poor her opinion has been leaning towards hospice in anticipation of this dramatic deterioration.

B

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Bill -

Unfortunately, too many of us can relate to what you are feeling -- I am so terribly sorry. I wish I could offer magic words, yet there are none. Know that you have done everything you can and that hospice is a fantastic thing that doesn't mean it is all over tomorrow. I am sure you have wonderful days ahead of precious conversation. I will forever be thankful of the talks my mom and I had when we knew the end was closer.

It is a monster that everyone is fighting. You and your wife will be in my heartfelt prayers. may you find peace and some joy in the coming months.

Love,

Holly

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Holly > It is a monster that everyone is fighting.

Holly et al.

Thanks for the kind words. Very little about this disease makes sense. An abundance of theories like no other disease. I'm not much into conspiracies and infomercials but the ability to produce cancer drugs that can do everything but deliver the knock out punch is wearing thin on me. Cancer cells are either the Einsteins of the cellular universe or cancer R&D is more interested in focusing on suppression and maintaining this disease as a chronic but controllable condition. Just one man's opinion.

I've seen enough, heard enough and read enough posts and bios on the LCSC boards to assure my wife that others have substantial lung and bone involvement and are still here to tell about it. Obviously, there are other drugs that can be tried to slow down this progression. I will leave that decision up to her. She has made it clear that she doesn't want to go thru another nosedive like the one that put her in ICU near death a year ago. Her biggest concern is losing her ability to walk and to be reasonably independent. Aside from some WBR-induced issues and two spine surgeries the cancer damage being done to her skeleton is scarring her. Esp. what's happening to the lower half of her spine and all aspects of the pelvis to her femurs. She needs a cancer drug(s) with a particular affinity for bone lesions. I don't see how further radiation can be of much help as the lesions are so numerous and she has already had portions of her spine radiated twice. We'll see what the med onc has to say on Tues. and her response. I'll let you know.

B

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OH, NO, BILL! I am devastated for you, just devastated! :cry::cry::cry:

Like your wife, Don, too, was a Tarceva miracle for 9 or 10 months. His onc did tell us that eventually the cancer would become resistant to it, which it did.

I refuse to give up praying for a miracle for your wife and praying for a treatment that will slow this down or obliterate it. If she doesn't get those things, I pray for a better quality of life, comfort, and most of all peace.

God bless you both!

Love,

Peggy

P.S. I had written you a couple of PMs over the past couple of months, but they remained unopened, so I finally deleted them. No matter whether you didn't see them or didn't want to open them, I hope you will always know how much I care.

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Dear Bill,

You and your dear wife in our thoughts and prayers! I like you believe that many many (most) if not all the R&D is for maintaining a chronic condition! Hopefully one day someone will solve the mystery for the greater good of us all! For now take good care of yourself and your wife she is - so so lucky to have you in her corner.

You are in our thougths and prayers!

Botley & Mother

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Bill,

My heart goes out to you both with that sad news. Its hard to believe that there was that much spread in such a short time. She was NED in Oct. and now it is massive. So scarey that it would spread that fast.

I am so sorry for that dismal diagnosis.

Maryanne

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Bill I am so sorry to hear about your wifes unfortunate down turn.

I will keep here in my prayers that there is another miracle treatment waiting for her just around the corner.

Also, I know it isn't a treatment for bone mets, but is your wife taking Zometa. Don Wood may be able to add more about the drug as his wife Lucie has taken it for bone mets for some time, but from what I've been able to gather it is a drug aimed to keep the bones strong and keep them from deteriorating from the effects of mets. I've also read some about its ability to keep the mets from spreading in the bones.

Just a thought.

Sending you both lots of love and prayers.

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