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Really good idea. Funny we never thought of it before. Nice one Zsolt.
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Nick
Embryonal Carcinoma; Seminoma. Marker negative.
August 2001: Right I/O .
August - December 2001: Surveillance .
December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
December 2001 - March 2002: 3xBEP .
Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.
March 2012 - Ten years since finishing chemo.
Survivorship Blog is here -
Hmmmm... Some light reading maybe
Hey guys, I was wondering if anyone ever sent out some brochures or something to hospitals. When I was in the waiting room at IU I noticed that they had pamphlets on resources for Lymphoma, Breast Cancer, etc. The only one for TC was pretty vague and offered no resource for networking or support like the forum. Has anyone ever tried to put together a booklet with down to earth easy to understand explanation of TC, maybe a success story and a link to this website? If not I think Lorinda and I would love to be involved and getting this going and having it distributed to cancer centers accross America.
Thoughts?
JohnDiagnosed 4/17/08
Right orchiectomy 4/18/08
Pure choriocarcinoma; HCG 715,000; lungs, lymphnodes, liver, and random other places
4X VIP chemo at IU with Dr. Einhorn 4/25/08-7/4/08
HCG down to 7.2 10/28/08
HCG back up to 198 12/29/08
1 X PVB 1/2/09-1/6/09
2 X HDC w/ stem cell rescue 2/4/09-3/14/09
Follow-up with Dr. Einhorn 4/22/09
HCG 1.2
3 rounds, 21 days, twice daily, VP-16 50mg 4/24/09-7/10/09
http://www.caringbridge.org/visit/johncovellComment
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John
After seeing my urologist, the MacMillan nurse who was allocated to me gave me a cancerBACKUP booklet on TC. They also provide the full content on their website (along with those for many other cancers) at http://www.cancerbackup.org.uk/Cancertype/Testes These booklets are provided free to UK patients. These can be ordered via http://www.be.macmillan.org.uk/Order/ These do use UK terminolgogy rather than that used in the USA. This could give you a starting point.
Nick - maybe worth adding these two links to the literature part of the UK People Welcome page?
JonJon
Left orchiectomy May 2008, AFP 1600, βHCG 200and normal after 5 months (AFP4, βHCG<1)
Non-Seminoma stage 1 - Under surveillance
3 years on and still all clear
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Thanks Jon. I'll ad them.Nick
Embryonal Carcinoma; Seminoma. Marker negative.
August 2001: Right I/O .
August - December 2001: Surveillance .
December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
December 2001 - March 2002: 3xBEP .
Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.
March 2012 - Ten years since finishing chemo.
Survivorship Blog is hereComment
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There are brochures from organizations such as the Jason A. Struble Memorial Cancer Fund or Sean Kimerling Testicular Cancer Foundation. We've talked about making a downloadable brochure available to print, but we haven't done it. I think this could be a great project for you and Lorinda!Originally posted by TC Destroyer View PostScott
right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since
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I keep hearing stories about young guys having symptoms and are embarrassed or just don't know how to approach their parents about it, meanwhile time is going by.
What if someone came up with something that could be printed out on this site that could be given to the parents to take the pressure off that first approach. Maybe something covering the concerns of finding the symptoms of TC, and informing the parents with the next steps that need to be taken.
This way all this young person would have to do is say Mom Dad there's something Id like you to read. Any ideas?
MaryHusband Paul Dx 6-8-07 Stage I 70%Ec 30%Sem
6-15 R- I/O
7-21-07 CT showed spread to abdomen chest Stage IIIA
3xBEP
Possible tox switched to 4 EP
Complete initial response
severe neuropathy
9-17-08 All ClearComment
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Prosthetics
Hi Team
From time to time questions do come up in relation to Prosthetics, they seem to be scattered around different areas.
Could this be a specific forum category? or just use the tagging?
Cheers
Kiwi
>>>>>>>>>
TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)Comment
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Perhaps renaming Living With TC to Challenges Post TC - Testosterone levels, prosthetics and mindset.... (or something like that)... I do not know if a subcategory can be created within the category (Scott???)Best,
Zsolt
Friendship is born at that moment when one person says to another; "What! You too? I thought I was the only one." - C.S Lewis
“Experience: that most brutal of teachers. But you learn, my God do you learn.” - C.S. Lewis
Mass found 11/20/08
Left I/O 11/25/08
Pathology: Seminoma, Stage 1
Surveillance: All Clear sinceComment
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No cancer allowed in 2011?
I was trying to update my profile with my diagnosis year, but 2011 isn't an option.
Wouldnt it be nice if it were that simple to prevent any new cases!Comment
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I knew we had something good going on here at TC-Cancer, but didn't think we were gonna be able to eliminate all new TC's in 2011 ;o)
DvaeJan, 1975: Right I/O, followed by RPLND
Dec, 2009: Left I/O, followed by 3xBEPComment
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We'll get that fixed.I was trying to update my profile with my diagnosis year, but 2011 isn't an option.
Alas, we wish we could fix that.Wouldnt it be nice if it were that simple to prevent any new cases!Best,
Zsolt
Friendship is born at that moment when one person says to another; "What! You too? I thought I was the only one." - C.S Lewis
“Experience: that most brutal of teachers. But you learn, my God do you learn.” - C.S. Lewis
Mass found 11/20/08
Left I/O 11/25/08
Pathology: Seminoma, Stage 1
Surveillance: All Clear sinceComment
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Maybe we could remove past years and retroactively eliminate cancer entirely!Originally posted by Nobody View Post
Thanks for reporting that. I added 2011 as a choice this morning.Scott
right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since
Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!Comment
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