I have survived toughest year. Still in danger, but still alive.
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24-06-2015, 08:42 PM
RE: I have survived toughest year. Still in danger, but still alive.
That is an odd-looking stew, but if it's got some hog in it, I don't doubt it was good.
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24-06-2015, 10:04 PM
RE: I have survived toughest year. Still in danger, but still alive.
Well where there is life there is hope. After speaking to my usual specialist I feel much better than before. The guy last week freaked me out!

"Your future is grim. We may be able to keep you alive until the end of the year..."

I kid you not, that is what he said to me while attempting to avoid eye contact and all the other doctors in the room looked at me like grim death. Quite a meeting! Big Grin

I'll never forget it.

However, today was a bit better. My white cell count is very bad. About as low as it can go. But my red cells and platelets have bounced back. (BONOX) I swear. Wink

[Image: 115909.jpg]

As to what can be done to save me? She was not overly enthusiastic about my chances with stem cells and bone marrow transplants. However, there is a new drug and clinical trials are taking place at two hospitals in Australia. The one in Sydney is called The Royal North Shore Hospital. It is across the harbour and is many kilometers from me. As opposed to the five minute walk to RPA that I am used to. But the cancer ward there is a new building and apparently the facilities are very good. Sadly I wont have the great relationship I have with the staff I know so well at RPA.

The new drug is called Blinatumomab. (Who names these things???) And it is available freely to patients undergoing the trial here in Australia.

For a look at the differences in the Australian health system to the (Fill in expletive here) "American health system" (Is there one?") read this first entry on Wiki:

Blinatumomab (AMG103) is a drug that has anti-cancer properties. It belongs to a class of constructed monoclonal antibodies, bi-specific T-cell engagers (BiTEs), that exert action selectively and direct the human immune system to act against tumor cells. Blinatumomab specifically targets the CD19 antigen present on B cells. In the United States, it was approved by the Food and Drug Administration in December 2014.[2] Blinatumomab costs $64,000 per months in the United States as of 2015.

Both brother and nephew attended the meeting with me, which was nice and comforting. Last week I was alone. Too bad because that day was harsh indeed.
First brother and I had coffee and toast at a cafe. Then father and son sat across from me in the waiting area.

[Image: 2015-06-25%2009.33.54_zpslwotxy5s.jpg]

[Image: 2015-06-25%2010.46.04_zpsrjfr4vnp.jpg]

My brother and I then went to a great Thai restaurant for lunch. He just dropped me off.

So, I expect to hear from the other hospital this afternoon or tomorrow. And I can attend Taso's rehearsal tomorrow night! Big Grin

They want to get me started asap but there is no point sending me in on Friday to hang around until they can get stuck into me on Monday.

This also means, and I REALLY appreciate this, four more days without hospital food!!!!! Look how happy I am! > Big Grin

It looks like you poor bastards are stuck with me a while longer. And who knows, maybe the other hospital has wi fi!

NOTE: Member, Tomasia uses this site to slander other individuals. He then later proclaims it a joke, but not in public.
I will call him a liar and a dog here and now.
Banjo.
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24-06-2015, 10:19 PM
RE: I have survived toughest year. Still in danger, but still alive.
Random aside #127:

"No one should ever have anything placed in their ass that is larger than a fist and less loving than a dildo." -- George Carlin.

Eat well and enjoy the rehearsal, bud.
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24-06-2015, 10:23 PM
RE: I have survived toughest year. Still in danger, but still alive.
(24-06-2015 10:19 PM)Thumpalumpacus Wrote:  Random aside #127:

"No one should ever have anything placed in their ass that is larger than a fist and less loving than a dildo." -- George Carlin.

Eat well and enjoy the rehearsal, bud.

That's good advice. Wink

Will do mate. Smile

NOTE: Member, Tomasia uses this site to slander other individuals. He then later proclaims it a joke, but not in public.
I will call him a liar and a dog here and now.
Banjo.
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24-06-2015, 10:26 PM
RE: I have survived toughest year. Still in danger, but still alive.
That amazing nurse is working now at RPA. I am going to take her the wedding gift.

Will tell you how it went when I return. Smile

NOTE: Member, Tomasia uses this site to slander other individuals. He then later proclaims it a joke, but not in public.
I will call him a liar and a dog here and now.
Banjo.
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24-06-2015, 10:29 PM
RE: I have survived toughest year. Still in danger, but still alive.
(24-06-2015 10:04 PM)Banjo Wrote:  "Your future is grim. We may be able to keep you alive until the end of the year..."




There is only one really serious philosophical question, and that is suicide. -Camus
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24-06-2015, 10:41 PM
RE: I have survived toughest year. Still in danger, but still alive.
Hmm, the new drug sounds like a positive move in a progressive direction. Maybe you could have the drug administered on an out-patient basis - you know, take it and just go home. Or is it something they have to monitor closely?

Find out more about it from people who have taken it - if that's possible. Be aware of possible side effects as a precaution- you may not be able to eat certain foods. Keep with the healthy diet to help it along!

Sounds like you're gonna be a pioneer. Thumbsup

A new type of thinking is essential if mankind is to survive and move to higher levels. ~ Albert Einstein
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24-06-2015, 11:01 PM
RE: I have survived toughest year. Still in danger, but still alive.
Go Banjo! I've been (vaguely) following the news on this new generation of cancer drugs and they sound amazing. Good luck Smile

We'll love you just the way you are
If you're perfect -- Alanis Morissette
(06-02-2014 03:47 PM)Momsurroundedbyboys Wrote:  And I'm giving myself a conclusion again from all the facepalming.
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24-06-2015, 11:19 PM
RE: I have survived toughest year. Still in danger, but still alive.
Thanks guys!

I expect to learn more about the drug when I speak with the hematology specialist at North Shore hospital. Finding other people who have taken this drug is likely problematic as patient records are private. Maybe there is a forum somewhere? Have not checked as yet.

Anyway I gave the card and gift voucher to C. who after reading it began to cry. "You didn't have to.." I said we do not do these things because we have to, but because we want to.

Here is a pic'. C. is on the right of the photo. The other lass is also extraordinary and they both have a huge place in my heart.

[Image: 2015-06-25%2014.44.47_zpssm5548gm.jpg]

NOTE: Member, Tomasia uses this site to slander other individuals. He then later proclaims it a joke, but not in public.
I will call him a liar and a dog here and now.
Banjo.
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25-06-2015, 12:06 AM
RE: I have survived toughest year. Still in danger, but still alive.
You should see what I just got in the mail. A huge package containing all sorts of offers to help. 7 pages of phone numbers of organisations that can offer help. I also have free access to 24 hour General Practitioners available through a free call #. This service is available 365 days a year regardless of weekends or public holidays.

There is also a list of pharmacies that are open close to me at any time of the day.

There's helpline networks, carers, support groups etc etc.

I am so lucky to live in Australia!

[Image: moreoftheluckycountry.jpg?w=549]

Just heard from my Dr. The Royal North Shore Hospital is willing and happy to take me on! Big Grin

[Image: royal-north.jpg]

NOTE: Member, Tomasia uses this site to slander other individuals. He then later proclaims it a joke, but not in public.
I will call him a liar and a dog here and now.
Banjo.
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