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Welcome New Member Carlster

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Prostate Cancer
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Posted 5/30/2013 6:21 PM (GMT 0)
Hi!
New in this forum, dx 1/13 at age 47
Psa at dx:700 G9, bone metastases
Started HT: Firmagon/Casodex and Zometa.
5/13 Psa:2,9
Onc. Suggested RT(rapidarc)next..in near future
Followed up with samarium..to start with.
"Sorry" to be here but since i am i hope to be for years
and years to come.
I do apologize for any misspellings as
my first language isn't english(finnish)
Hope to hear from anyone with any suggestions
or hints to fight my pc.

Post Edited By Moderator (PeterDisAbelard) : 5/30/2013 12:26:21 PM (GMT-6)

Posted 5/30/2013 6:29 PM (GMT 0)
Hi Carlster,

Welcome to the forum.

I gave your post a title for you. Sorry you need to be here but we'll try to help.

We have many men here who received similar diagnoses. They'll be along soon to talk about their experiences.
Posted 5/30/2013 6:45 PM (GMT 0)
Welcome aboard!  Great bunch of folks, always willing to give their advice!  They've helped me threw a bunch!
Posted 5/30/2013 6:48 PM (GMT 0)
Hi Carlster and welcome to our little club - sorry you have to be here but you'll find it's a great place to be for support as well as guidance from others that have "been there, done that."  In fact I believe you find a number of gents out here with G9 and similar stats that will be able to provide lots of insight to help you.

Best to you - and by the way, do you celebrate "St. Urho's Day?"  wink

Posted 5/30/2013 7:01 PM (GMT 0)
Never heard of st.urhos day before, untill now tongue tongue but greatings from a very sunny Finland to everyone!
Posted 5/30/2013 7:33 PM (GMT 0)
Carlster,

I'm sorry you have to deal with metastasized PC at such a young age. I've heard great things about the Finnish medical system, and hope you are in great hands. With Firmagon, Casodex and Zometa, you are getting some of the best medications available.

In the US, we can only get Zytiga or Xtandi if we are castration-resistant too, but the protocols may be different there. Also, Xofigo (alpharadin) for the bone mets may be available to you (I think it's manufactured next door in Norway).

As far as immunotherapies, Provenge is approved in the US and it may be of more benefit if used earlier. Yervoy (ipilimumab) has been approved for melanoma, but I think it will be approved for PC soon.

The other drug that seems to be extraordinary at clearing up bone mets is Cometriq (cabozantanib). It's currently approved in the US for thyroid cancer, but I think it will be approved for PC soon.

In the US, doctors can prescribe drugs not yet approved for a specific indication. It's called "off-label" use. Here, insurance will usually not cover the cost of off-label use - and these new drugs are hyper-expensive. I don't know if you can get them there, but you can ask your doctor about all these medications.

I think the RapidArc is for SBRT treatment of your bone mets?

- Allen
Posted 5/30/2013 9:30 PM (GMT 0)
Here zytiga is free (as most cancer drugs)but only
post chemo..hoping to cope with current
ht for awhile and acheving nadir asap.
In public healtcare treatments are free
but the privat sector often provides more
options, but it can get quite expensive.
Anyone have experiences of treatment
with oncolytic viruses? Seems to be quite
high hopes for that treatment.
Posted 5/31/2013 2:13 AM (GMT 0)
Welcome, hope for good results.
Posted 5/31/2013 2:32 AM (GMT 0)
As a former Finn coworker used to say, "hyvää päivää"!

Welcome, sorry you need to be here, you've come to a helpful place.
Posted 5/31/2013 3:15 AM (GMT 0)
A big welcome from sunny Florida USA! Sorry you have to be here with such a heavy journey ahead of you. We have many G9 brothers here that will give you lots of great encouragement.

Your English is great!

You are not alone any more! Keep coming back.

Bill from Florida cool
Posted 5/31/2013 5:10 AM (GMT 0)
Thanks guys for the supportive messages..
means a great deal.
Posted 5/31/2013 6:29 AM (GMT 0)
Welcome Carlster. I just joined three days ago myself. Aloha from Hawaii and yes its sunny like Finland. I discovered these guys here are great -- lots of good advice. We are pulling for you.
Posted 5/31/2013 6:33 AM (GMT 0)
Carlster,

Welcome to our family. Your English is more than fine. Finland is a beautiful country, hope to visit one day. Even with a serious diagnosis like you have, especially at a younger than normal age, there is
much to be hopeful with many new advanced treatments being developed and released.

Glad to have you with us, and look forward to future posts from you.

david
Posted 5/31/2013 4:11 PM (GMT 0)
Welcome Carlster. Sorry you have to be here, We are all dealing with PCa and try to help each other whenever we can. There are a lot of brothers on this forum who help and share their experiences and who may be in a similar situation as yours.
Posted 5/31/2013 4:12 PM (GMT 0)
Welcome. Best of luck to you.
Posted 5/31/2013 4:16 PM (GMT 0)
Welcome, Carlster. I echo everyone's sentiments that we're sorry you're joining our little club.

To me, the best thing about this forum is that not only can you get a lot of information. I mean a LOT! But, it's a place where (gasp) men also can share their fears, joys, and other feelings that we're often not so good at discussing.
Posted 5/31/2013 8:30 PM (GMT 0)
Hey again Carlster - the "St Urho" thing - pretty much a made up thing by a guy or guys in the U.S., Minnesota and the U.P. of Michigan.  Interesting take on it from Wikipedia:

http://en.wikipedia.org/wiki/Saint_Urho

Stay with us, keep asking questions and again the guys with similar stats to yours will be a wealth of experience to add to your knowledge base.

Best to you.

 

Posted 5/31/2013 9:18 PM (GMT 0)
Hi Carlster,
Thanks for coming on to share your experience. We'll give you the benefit of ours. That's a tough diagnosis, but there's worse on here who are doing well. Best of luck.
Henry
Posted 6/9/2013 11:50 AM (GMT 0)
Carlster,
'just got an email from my brother in Finland, he said lotsa heat and skeeters but had a great cookout at cabin (in Lanni), was thinking about ya so thought I'd see how you're doing. Toivon, etta kaikki on hyvin. Koskaan anna periksi!
Posted 6/9/2013 1:28 PM (GMT 0)
Hi!
Meeting my onc next tuesday, and i'll hear
my latest psa result so i am a bit nervous.
Otherwise doing guite fine, lots of physical
exercise and healthy eating(most of the time)
Still warm and sunny in this part of scandinavia,
hoping for good news next tuesday and wishing
good/better news for all you guys and girls dealing
with pc.
Posted 6/9/2013 1:58 PM (GMT 0)
Welcome Carlster,

I am glad you have found our little corner of the Internet and I wish you the best with your prostate cancer. There are quite a few here with Gleason 9 cancer, it may help if you do site searches on topics that interest you as they may have also been covered in a past thread.

Regards,
An
Posted 6/9/2013 3:13 PM (GMT 0)
..Welcome to HW, I am also fairly new here and do learn a ton of information here and get a lot of support from other members. Finland is a wonderful place I have never been to but read about. I am a rifle Instructor who owns three M39 Finnish rifles, great rifles with an awesome history. Finland has a great history and beautiful forests. I am also a G9 but without bone metastasis yet, I did the surgery cause we felt it was contained but post op pathology report states lymph node involvement 1 of 18. So it goes. Good Luck we are all here for you and one another, welcome..

........Project Appleseed Nick..............
Posted 6/9/2013 4:34 PM (GMT 0)
Another welcome from a fellow G-9er. And welcome to all the newer posters as well.
Posted 6/9/2013 5:07 PM (GMT 0)
And yet another Hello from a G9... Sounds like you've got the right attitude.
This is a great place to learn. I find this a good place to stay on top of things. I had a meeting with my Oncologist last Wednesday and he said I continually impress him with my broad base of knowledge... Most of which I've picked up here.
All the best!
Posted 6/11/2013 3:09 PM (GMT 0)
Hello Carlster,

Welcome to our great club. As a G9 myself, I take it a day at a time. I also am new here and have really enjoyed this site as all the members are so helpful.

I will admit, I have my up days and down days, mostly great and wonderful days and just try to stay positive. There are a lot of great treatments in front of us and as my oncologists says, if my present treatment stops working, we'll try another med.

God Bless and best of luck,

Dave in Bartlett, TN
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