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Ugh! Juel! What did the Drs have to say??

--- captwildchild wrote:

> I took Dale to have his first chemo treatment. However, his blood count was

too low so they are

> giving him IV instead.

>

> They took a PSA Monday. 487. No typo. It was 4 in July.

>

>

> Peace on the journey,

> Juel

> captwildchild@...

> ************************************

> If you are going through hell, keep going. --Winston Churchill

>

> September is Prostate Cancer Awareness Month. http://www.pcaawareness.net/

> __________________________________________________

>

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The doctor said the cancer is aggressive. (duh) He wants to get Dale healthy enough for chemo, but even then doesn't give much hope. He said the number so matter-of-factly that I questioned what he said. Peace on the journey,Juel captwildchild@...************************************If you are going through hell, keep going. --Winston ChurchillSeptember is Prostate Cancer Awareness Month. http://www.pcaawareness.net/__________________________________________________

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What was his Gleason score?? (You must have wanted to slap that Dr up right

side of the head!)

--- captwildchild wrote:

> The doctor said the cancer is aggressive. (duh) He wants to get Dale healthy

enough for chemo,

> but even then doesn't give much hope. He said the number so matter-of-factly

that I questioned

> what he said.

>

>

> Peace on the journey,

> Juel

> captwildchild@...

> ************************************

> If you are going through hell, keep going. --Winston Churchill

>

> September is Prostate Cancer Awareness Month. http://www.pcaawareness.net/

> __________________________________________________

>

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Oh my, his Gleason was 5+4 way back when. Peace on the journey,Juel captwildchild@...************************************If you are going through hell, keep going. --Winston ChurchillSeptember is Prostate Cancer Awareness Month. http://www.pcaawareness.net/

Yahoo! for Good Click here to donate to the Hurricane Katrina relief effort.

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I went to the recent FDA meeting on Xinlay (atrasentan),. It was not approved for general use but it appears that it will be once additional trials are done. I was not planning to speak but I did. There were many drug companies there along with the FDA. There were about 6 survivors who spoke in addition to me and there was one survivor on the panel. We are all frustrated that there are so few options for men with advanced PCa. I was the last to speak and I told them all that men are suffering and dying. We want safe drugs but we are desperate for new treatments.

I am not a doctor but it sounded to me that they will find the drug has benefits to men with advanced disease. There is a subset of men who definitely have a response. Who those men are we do not know yet.

Juel, you might want to talk to the doctors about compassionate use of Xinlay (atrasentan), It is a possibility for men like your husband who have not responded to standard treatment. It will continue to be available on this basis. If I remember correctly you are in the US. .

I do not remember, is your husband being treated at a cancer center with experience with PCa? If not he needs to seek one out immediately.

I remember how helpless I felt when Bill's cancer went out of control. This drug may be available for your husband. Some men have had outstanding response to the drug and if there are no other options, it is worth a try. In addition it has had a positive response in lessening bone pain.

One down side is that some men have had cardiac issues but the one doctor who has used the drug said that the men who had cardiac issues had cardiac problems prior to taking the drug. He felt strongly that the drug was safe.

I tell the men I work with face to face, the reason I do this, as a widow is for the hugs. Seems like you may need one of those hugs right now so I am sending one to you through the email. Just know that there are people who understand what you feel and what you are experiencing. I hope you both have a support system to use right right now.

Kathy

-----Original Message-----From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of captwildchildSent: Wednesday, September 14, 2005 4:58 PMTo: ProstateCancerSupport Subject: Re: in shock

Oh my, his Gleason was 5+4 way back when. Peace on the journey,Juel captwildchild@...************************************If you are going through hell, keep going. --Winston ChurchillSeptember is Prostate Cancer Awareness Month. http://www.pcaawareness.net/

Yahoo! for GoodClick here to donate to the Hurricane Katrina relief effort.

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Juel,

Often doctors say the difficult things matter of factly because people can accept them easier that way.

Bill and I got good at reading eyes. We could tell if there was bad news coming by the eyes.

There is a list, Promise, that is for caregivers of PCa men in late stage and for widows. http://www.prostatepointers.org/mlist/mlist.html In addition tot his list, you might want to go there.

Kathy

-----Original Message-----From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of captwildchildSent: Wednesday, September 14, 2005 4:30 PMTo: ProstateCancerSupport Subject: Re: in shock

The doctor said the cancer is aggressive. (duh) He wants to get Dale healthy enough for chemo, but even then doesn't give much hope. He said the number so matter-of-factly that I questioned what he said.

Peace on the journey,Juel captwildchild@...

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Kathy wrote: I do not remember, is your husband being treated at a cancer center with experience with PCa? If not he needs to seek one out immediately.

Yes we are in the US and yes he is being treated by Dr Tomasz Beer at OHSU. We are doing this first round here in Salem but if this doesn't work we will be making the trips to Portland (1 hr) to get the second round. We both love Dr Beer and feel very confident in his abilities. Peace on the journey,Juel captwildchild@...************************************If you are going through hell, keep going. --Winston ChurchillSeptember is Prostate Cancer Awareness Month. http://www.pcaawareness.net/__________________________________________________

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Beer is listed as one of the top 100 doctors in Oregon and the top two or three in the treatment of cancer. It is a great choice in Docs. captwildchild wrote:

Kathy wrote: I do not remember, is your husband being treated at a cancer center with experience with PCa? If not he needs to seek one out immediately.

Yes we are in the US and yes he is being treated by Dr Tomasz Beer at OHSU. We are doing this first round here in Salem but if this doesn't work we will be making the trips to Portland (1 hr) to get the second round. We both love Dr Beer and feel very confident in his abilities. Peace on the journey,Juel captwildchild@...************************************If you are going through hell, keep going. --Winston ChurchillSeptember is Prostate Cancer Awareness Month. http://www.pcaawareness.net/

__________________________________________________

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wrote: Beer is listed as one of the top 100 doctors in Oregon and the top two or three in the treatment of cancer. It is a great choice in Docs.

Yes, referring us to him was one of the things the urologist did right. He is a coordinator/speaker at the OHSU prostate cancer symposium next weekend.

And for some good news: My brother and his wife found out yesterday they are not only having one baby, they are having two! They are apparently not as happy as the rest of us, but I am sure they will be once the shock wears off. Peace on the journey,Juel captwildchild@...************************************If you are going through hell, keep going. --Winston ChurchillSeptember is Prostate Cancer Awareness Month. http://www.pcaawareness.net/

Yahoo! for Good Click here to donate to the Hurricane Katrina relief effort.

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Good news is always welcome!! One baby for each arm!!

--- captwildchild wrote:

> wrote: Beer is listed as one of the top 100 doctors in Oregon and the

top two or three

> in the treatment of cancer. It is a great choice in Docs.

>

> Yes, referring us to him was one of the things the urologist did right. He is

a

> coordinator/speaker at the OHSU prostate cancer symposium next weekend.

>

> And for some good news: My brother and his wife found out yesterday they are

not only having one

> baby, they are having two! They are apparently not as happy as the rest of us,

but I am sure

> they will be once the shock wears off.

>

>

> Peace on the journey,

> Juel

> captwildchild@...

> ************************************

> If you are going through hell, keep going. --Winston Churchill

>

> September is Prostate Cancer Awareness Month. http://www.pcaawareness.net/

>

> ---------------------------------

> Yahoo! for Good

> Click here to donate to the Hurricane Katrina relief effort.

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