Moving forward with a clinical trial

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sandrichelle
Posts: 396
Joined: Tue Feb 21, 2012 10:31 am
Location: Albany, NY

Moving forward with a clinical trial

Postby sandrichelle » Wed Jul 03, 2013 10:07 am

Hi guys,

I just wanted to see if you guys had any insight, opinions, good or bad regarding the trial I am about to start. I am really hopeful that this may work for me :)

Open-Label Phase 2 Efficacy Trial of Cancer Macrobeads in Patients With Treatment-Resistant Pancreatic or Colorectal Cancer
http://ClinicalTrials.gov/show/NCT01053013


I so value you guys opinions!!

Michelle
Dx Stage IV CC 02/12-56.1 CEA
Resection/Bye Bye Uterus 02/12
Folfox 03/12-08/12
05/01/12 3 TX CEA-6.5
07/23/12 10 TX CEA-5.0
09/18/12 PET shows 3 suspicious spots CEA -15.5
09/25/12 CEA- 23.8
10/23/12 CEA-51.8 1st of 6 FOLOFIRI
http://www.yeswecansir.com

Felicia
Posts: 100
Joined: Sat Feb 18, 2012 3:44 pm
Facebook Username: Baddmom
Contact:

Re: Moving forward with a clinical trial

Postby Felicia » Wed Jul 03, 2013 10:17 am

I think it's interesting! So they just put the cancer beads into your abdomen? Do I have that right? Looks like this one is open regardless of mutations.

Did they give you any idea on side effects you can expect?

Thanks for sharing.
Felicia
DH age 48, dx 10/26/11 -cc stage4, liver mets
12/11 - 8/12 chemo
Liver resection 9/12 -- NED
12/12-its back
TACE, HAI chemo fail
tumors: lung,liver,LN,peri,bones
Hospice
http://www.caringbridge.org/visit/michaelfadams

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Bev G
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Location: Quechee, VT

Re: Moving forward with a clinical trial

Postby Bev G » Wed Jul 03, 2013 10:22 am

WIshing you all success with this trial! You know all your friends here are with you in spirit, hoping and praying for the best, and anxiously awaiting GREAT news on results! Thanks for being a pioneer!

xoxox

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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sandrichelle
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Joined: Tue Feb 21, 2012 10:31 am
Location: Albany, NY

Re: Moving forward with a clinical trial

Postby sandrichelle » Wed Jul 03, 2013 11:09 am

Felicia wrote:I think it's interesting! So they just put the cancer beads into your abdomen? Do I have that right? Looks like this one is open regardless of mutations.

Did they give you any idea on side effects you can expect?

Thanks for sharing.
Felicia

Felicia yes and regarding side effects some have reported some abdominal cramping but nothing long term and they have been doing it in humans for 7 years now.
Dx Stage IV CC 02/12-56.1 CEA
Resection/Bye Bye Uterus 02/12
Folfox 03/12-08/12
05/01/12 3 TX CEA-6.5
07/23/12 10 TX CEA-5.0
09/18/12 PET shows 3 suspicious spots CEA -15.5
09/25/12 CEA- 23.8
10/23/12 CEA-51.8 1st of 6 FOLOFIRI
http://www.yeswecansir.com

annalexandria
Posts: 684
Joined: Wed Sep 28, 2011 11:46 am
Location: Seattle, WA

Re: Moving forward with a clinical trial

Postby annalexandria » Wed Jul 03, 2013 11:44 am

Good luck, Michelle! It sounds like it's got a lot of possibility, so I hope it has great results for you. Big hugs coming your way~AA
Mom, librarian
Dx age 43, Sept. '09, Stage IV Carcinosarcoma of the colon
5 surgeries, 2009-2011:
colon/sm. bowel res., node removal, peritoneum, hysterectomy
FOLFOX/Avastin Feb.'10-Aug '10
Carbo-Taxol Dec. '10-Feb. 2011
NED since Dec. 2011.

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sandrichelle
Posts: 396
Joined: Tue Feb 21, 2012 10:31 am
Location: Albany, NY

Re: Moving forward with a clinical trial

Postby sandrichelle » Wed Jul 03, 2013 6:05 pm

Thanks guys, I have my consult and screening on Monday! I will keep you posted
Dx Stage IV CC 02/12-56.1 CEA
Resection/Bye Bye Uterus 02/12
Folfox 03/12-08/12
05/01/12 3 TX CEA-6.5
07/23/12 10 TX CEA-5.0
09/18/12 PET shows 3 suspicious spots CEA -15.5
09/25/12 CEA- 23.8
10/23/12 CEA-51.8 1st of 6 FOLOFIRI
http://www.yeswecansir.com

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Guinevere
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Joined: Tue Oct 11, 2011 4:19 pm
Location: NE TX

Re: Moving forward with a clinical trial

Postby Guinevere » Wed Jul 03, 2013 7:01 pm

Good luck and I'm praying it successful!

God bless ~
Guinevere
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

Val*pal
Posts: 860
Joined: Sun Feb 10, 2013 1:24 pm
Facebook Username: Valerie Barkus Kantner
Location: Metro Detroit, Michigan

Re: Moving forward with a clinical trial

Postby Val*pal » Wed Jul 03, 2013 11:45 pm

How do they place the beads in the abdomen?
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest

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sandrichelle
Posts: 396
Joined: Tue Feb 21, 2012 10:31 am
Location: Albany, NY

Re: Moving forward with a clinical trial

Postby sandrichelle » Thu Jul 04, 2013 8:09 am

The beads are placed in the abdomen via laproscopic surgery.
Dx Stage IV CC 02/12-56.1 CEA
Resection/Bye Bye Uterus 02/12
Folfox 03/12-08/12
05/01/12 3 TX CEA-6.5
07/23/12 10 TX CEA-5.0
09/18/12 PET shows 3 suspicious spots CEA -15.5
09/25/12 CEA- 23.8
10/23/12 CEA-51.8 1st of 6 FOLOFIRI
http://www.yeswecansir.com

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Moving forward with a clinical trial

Postby skypup » Thu Jul 04, 2013 9:17 am

Have you read the following?

http://healthinfoispower.wordpress.com/ ... al-trials/ (a good overview. There are additional links in the bibliography you might want to track down.)

http://meeting.ascopubs.org/cgi/content ... 3594?rss=1 (this reports on the results of the phase 1 trial)

http://meeting.ascopubs.org/cgi/content ... 3594?rss=1 (from Nature, gives some report of the animal trials)

http://cancerres.aacrjournals.org/content/71/3/716.long (academic article, lots of info, much technical)

http://cancerres.aacrjournals.org/content/71/3/725.long (another academic article)

Looks very interesting, and not dangerous. Can't wait to hear how it goes and wishing you the best of luck!

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sandrichelle
Posts: 396
Joined: Tue Feb 21, 2012 10:31 am
Location: Albany, NY

Re: Moving forward with a clinical trial

Postby sandrichelle » Thu Jul 04, 2013 9:57 am

Skypup,

Some I have, some I have not and some I just really don't understand :)

Thanks!!! Much appreciated!
Dx Stage IV CC 02/12-56.1 CEA
Resection/Bye Bye Uterus 02/12
Folfox 03/12-08/12
05/01/12 3 TX CEA-6.5
07/23/12 10 TX CEA-5.0
09/18/12 PET shows 3 suspicious spots CEA -15.5
09/25/12 CEA- 23.8
10/23/12 CEA-51.8 1st of 6 FOLOFIRI
http://www.yeswecansir.com

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sandrichelle
Posts: 396
Joined: Tue Feb 21, 2012 10:31 am
Location: Albany, NY

Re: Moving forward with a clinical trial

Postby sandrichelle » Thu Aug 08, 2013 11:31 am

Hi guys,
Just wanted to stop in and give you a quick update on my treatment. Not much to tell at this point except my cea did drop from 415 to 290 which is significant and promising. The procedure itself was realativly easy, only issue being pain control post surgery as I have been on so much medication it's hard to cover pain now, I have to take a lot! I have one spot in my butt bone, not a bone met but in the soft tissue that has been the culprit of most of my pain, well we are radiating it so I am slowly tapering off of the pain meds. Will keep you posted!
Thanks
Michelle
Dx Stage IV CC 02/12-56.1 CEA
Resection/Bye Bye Uterus 02/12
Folfox 03/12-08/12
05/01/12 3 TX CEA-6.5
07/23/12 10 TX CEA-5.0
09/18/12 PET shows 3 suspicious spots CEA -15.5
09/25/12 CEA- 23.8
10/23/12 CEA-51.8 1st of 6 FOLOFIRI
http://www.yeswecansir.com

usopen
Posts: 188
Joined: Mon Jul 18, 2011 12:37 pm

Re: Moving forward with a clinical trial

Postby usopen » Sat Aug 10, 2013 11:43 am

That's great Michelle. Nice drop in CEA.
While I was in Ny a few weeks ago, I realized I would be right across the street from where Dr. Smith's office is located.
We had made arrangements a few days before, to talk about the trial. I really liked Dr. Smith.
For now we decided to go forward with another plan with the local onc, and see what happens, but I am still very excited with his research. ( i have ascites, and Dr. Smith said that could affect healing even at the incision site of the beads. So on hold......but said stay in touch.
I am very, very, happy for you.

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Moving forward with a clinical trial

Postby skypup » Sat Aug 10, 2013 11:59 am

sandrichelle wrote:Hi guys,
Just wanted to stop in and give you a quick update on my treatment. Not much to tell at this point except my cea did drop from 415 to 290 which is significant and promising. The procedure itself was realativly easy, only issue being pain control post surgery as I have been on so much medication it's hard to cover pain now, I have to take a lot! I have one spot in my butt bone, not a bone met but in the soft tissue that has been the culprit of most of my pain, well we are radiating it so I am slowly tapering off of the pain meds. Will keep you posted!
Thanks
Michelle

Yay for the great drop in CEA! Thanks for the update. Wishing you continued success!!!

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Phuong
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Facebook Username: Phuong Ly Gallagher

Re: Moving forward with a clinical trial

Postby Phuong » Sat Aug 10, 2013 12:44 pm

Nice drop! Wishing you continued success. ((hugs))
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC


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