my scan results were amazing w/zaltrap

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jobasar
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my scan results were amazing w/zaltrap

Postby jobasar » Thu Mar 07, 2013 11:35 am

Hi everyone, I have not been posting much but reading on all of you. I am a stage four cc survivor with colon ruptured in 08 and took docs three months to figure this one out. I wasn't septic but found I had spot on liver. so chemo later two resection and 2 years off of chemo which I wasn't in remission but on watch. Well last march had scan and spot on rib so I did radiation and chemo. It took it away but while waiting to do sphere last Oct. they could not get into the veins to put the coils in so I waited two more months to find out I had to go back to chemo because I had not one liver tumor at 5 cm but two tiny ones showed up on my scan. Well, I started folfiri again with zaltrap. after three rounds of zaltrap my scan showed no sugar uptake at all. Yahoooooo! :) Not even on rib. I have never had a scan with out the uptake showing up some as it goes down on uptake. Not sure what the measurements are because they had hard time with my veins so i didn't do the reg ct with contrast. I only did pet/ct. So I do two more rounds after this treatment I am on now. So in about six weeks will do pet/ct and ct w/contrast and probably get me off Irikotecan. sp..... I will hopefully be off chemo for a while. I hope this finally killed the tumors. Onc. said it is looking like tumors are dead and who cares about the size if there isn't any uptake. My sphere doc was impressed too. The lung nodule that lights up, it did light up but not changed. He thinks it's not cancer and not sure what it is. It has been there in early of 09. One spot. So here is hope and good news to help you all out.

Zaltrap knocked me down on my butt but he reduced it this time to 50 percent and see how I do and up it to 75 next time. I am doing well otherwise and so happy with my results. I hope this helps you all with zaltrap.

Allie

Don't worry, Be Happy! :)
dx. 12/24/08 w/stage 4 cc/1met to liver
C tumor removed on 01/02/09
Liver surg. on 04/09 clear margins
12 tx's chemo
9/09 NED
01/22/10/2 small lesions on rt. lobe liver.
Liver surgery 03/23/10/n
5/10, 8/10, 11/10, 5/11, 7/11, 9/11 NED

skypup
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Re: my scan results were amazing w/zaltrap

Postby skypup » Thu Mar 07, 2013 11:47 am

Hey Allie, thanks for the good news! Congratulations!

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Ashlee H.
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Re: my scan results were amazing w/zaltrap

Postby Ashlee H. » Thu Mar 07, 2013 11:49 am

I'm so happy we have a few with such positive results from Zaltrap. I have only done one round. The hardest thing has been the fatigue. For the first week, I swear I slept for 20 hours a day.
My last PET/CT showed no uptake, but my CEA and CA 19-9 continued to rise. When my CEA got to 10 and CA 19-9 to 100, my ONC and I decided it was time to go back on chemo. I'm so hoping for a huge drop in my numbers. What have your numbers been?
The "R" drug seems to have been a big disappointment, but Zaltrap is showing a lot of promise.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

NWgirl
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Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: my scan results were amazing w/zaltrap

Postby NWgirl » Thu Mar 07, 2013 1:04 pm

Allie and Ashlee, thank you for sharing your results - this is very encouraging to me. Were you able to receive Zaltrap at your local cancer center or did you have to go someplace "big"? I'm going to discuss it with my oncologist when we meet next week. I started a separate thread asking for input (including on Zaltrap); your posts give me hope.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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Ashlee H.
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Re: my scan results were amazing w/zaltrap

Postby Ashlee H. » Thu Mar 07, 2013 1:11 pm

Belle - I get my Zaltrap at my regular chemo center. It's FDA approved. Just need to get your insurance to approve it.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

SkiFletch
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Location: Buffalo, NY

Re: my scan results were amazing w/zaltrap

Postby SkiFletch » Thu Mar 07, 2013 4:08 pm

Great news Allie. Hope it keeps working for ya :)
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

jobasar
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Re: my scan results were amazing w/zaltrap

Postby jobasar » Thu Mar 07, 2013 5:26 pm

Belle nwgirl, I receiving at Az oncology and insurance approved.it. It's cheaper than avastin and working better. I got really tired too and my mouth was really sore that's why he dropped it by fifty percent. Feeling better now but next round he will up it to 75 percent. I think it's worth a try.
dx. 12/24/08 w/stage 4 cc/1met to liver
C tumor removed on 01/02/09
Liver surg. on 04/09 clear margins
12 tx's chemo
9/09 NED
01/22/10/2 small lesions on rt. lobe liver.
Liver surgery 03/23/10/n
5/10, 8/10, 11/10, 5/11, 7/11, 9/11 NED

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KarMel
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Re: my scan results were amazing w/zaltrap

Postby KarMel » Thu Mar 07, 2013 7:34 pm

jobasar wrote:Belle nwgirl, I receiving at Az oncology and insurance approved.it. It's cheaper than avastin and working better. I got really tired too and my mouth was really sore that's why he dropped it by fifty percent. Feeling better now but next round he will up it to 75 percent. I think it's worth a try.



I agree, worth try. If Yu can make it thru the side effects, the drug certainly may help stop or stabilize growth.
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"

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Kathryn in MN
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Re: my scan results were amazing w/zaltrap

Postby Kathryn in MN » Fri Mar 08, 2013 2:09 pm

My results were also amazing! My CEA started dropping immediately. I had spent 14 months on FOLFIRI + Avastin or some combo of that, with many being Irinotecan + Avastin, before doing radiation for my remaining tumors (because that combo kept me stable, but did not clear me of tumors).

On Irinotecan + Zaltrap my CEA went down to 2.0, which is the lowest it has ever been. I had 5 tx, but the 3rd one I did not get Zaltrap. I took one cycle off to get my BP back under control and to hope the other really bad problems I had would clear up too. I went back on it at 50% dose. I had to quit after 5 because I had severe gastroparesis and vomiting. We think it was from the Zaltrap, but aren't positive. It kicked cancer's ass, but kicked mine too! A CT and a few MRI's (abdomen & pelvis, brain, spine) were all clear other than my spinal tumors, after just 5 total treatments, only 4 with Zaltrap. I am STILL angry with Dr Saltz and MSKCC for their stance that Zaltrap is just another Avastin because they are the same category of drug. Each patient is an individual, and each drug works differently on different patients/tumors. There is NO comparing Avastin and Zaltrap for me - Zaltrap wins hands down! A HUGE difference!

I've had a long enough break due to how good it worked, that I will be able to tolerate 3-6 treatments again when needed. I haven't had chemo since November and I have been off all treatment since my STAR Ablation RFT to my spinal met in December, other than monthly Xgeva shots for my bones. My CEA rose from 2.0 to 3.2 5 weeks later, then to 3.8 5 weeks after that. This is a very slow rise - slower than after my break over a year ago. I have a PET/CT scheduled for mid-April and will redo labs then too. We'll see if I need chemo again yet at that point or if I can hold off a bit. I'm pretty sure I have a bit of bone progression again, but that usually grows slowly. So far I am a Zaltrap fan and hope it can help others the way it has helped a few of us.

QUESTION FOR THOSE WHO HAVE HAD ZALTRAP
Are you KRAS mutant, and WHICH mutation do you have. Mine is codon G13D. (Most are codon 12) I'm just curious if KRAS status makes a difference, and if so, it breaking it down further makes a difference. They have not studied that yet.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

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Ashlee H.
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Location: Southern California

Re: my scan results were amazing w/zaltrap

Postby Ashlee H. » Fri Mar 08, 2013 9:18 pm

Yup - I'm a mutant too...don't know what codon though. My CEA and CA 19-9 have always been good markers for me...wonder if that will play into the Zaltrap response too?
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

vickitwo
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Joined: Thu Apr 26, 2012 9:56 am
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Re: my scan results were amazing w/zaltrap

Postby vickitwo » Sat Mar 09, 2013 9:51 am

My hubby's gets his chemo at the local regional hospital which is in a small town. His oncology nurse said that he was the first patient to whom she had administered Zaltrap. He only recieved two treatments before it had to be put on hold for an impending tooth extraction. His CT scan with four rounds of Folfiri and two rounds of Zaltrap was stable. DH is KRAS mutant. That's all I know about it. He was put on BP meds with the Zaltrap but in my opinion he should have been getting BP meds way before that.
Vicki

DH Dx 1/2012 @ age 52
stage IV CC
transverse colon,omentum, cecum,liver,lungs,L5
9 rounds of Folfox, Avastin,
5FU/Leucovorin/Avastin
radiation tx to L5 and hips
Folfiri/Zaltrap
12/13/13 Folfox/Avastin
1/4/2014 passed away @ Hospice House- age 54

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Rob in PA
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Re: my scan results were amazing w/zaltrap

Postby Rob in PA » Sat Mar 09, 2013 10:33 am

I got my port flushed yesterday at my local cancer center which is about two hours away from where all my major stuff is done at UPMC Pittsburgh, anyhow, because of this thread I asked the nurse who I've known for the last five years of treatment if they have been administering Zaltrap. Her response was "what's that"? And that, is why I have an onc in Pittsburgh and one locally to administer the chemo recommended by my Pittsburgh onc. She also never heard of regorofenib (sp?).

I'm sure if I ever need it, I'll get the Pittsburgh folks to instruct the local onc on what to do, but it scares me to think how many people "settle" for the nearest cancer center to hold their life in their hands and not know about the latest treatments. Not saying that my local onc doesn't know about zaltrap, but it was clear that they aren't using it and haven't even talked to the onc nurses about it.

This brings up a good point for any newbies out there. Local cancer centers are great for convenience, but if possible, go to a major cancer center and get your game plan and work with local onc to implement it if possible.

wishing continued success Zaltrappers!

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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novascotia
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Joined: Tue Mar 23, 2010 10:36 am
Location: Canada, Nova Scotia

Re: my scan results were amazing w/zaltrap

Postby novascotia » Sat Mar 09, 2013 1:16 pm

I am so happy to hear about the good results that some of you are having with Zaltrap. It might be something that I will be asking about in the near future. Does anyone know if it is available in Canada yet?
Carm
Dx June 05, Stage IV mets liver,lung age 45
Resected all-12 folfiri
NED Apr 06–Mar 09
Apr- 09- Dec 10 radiation,hysterectomy, 6 Folfox
May 11 PET.. Mass in pelvis
July 11 HIPEC
9 folfiri to Feb 12
MRI June 12 tumor on bladder/ureter, piriformis muscle

dj2158
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Location: New York

Re: my scan results were amazing w/zaltrap

Postby dj2158 » Sun Mar 10, 2013 12:42 am

Great news Allie!! Hope you continue to have good results with this regimen.

I am KRAS mutant also but the Avastin IS working for me so far. Had many little tumors in both lungs and one that was 1.6cm and nothing lit up on my CT/PET after four months on Xeloda and Avastin. I agree, it is an individual thing. I'm hoping this regimen will continue to keep things stable for a long while. I'm hoping in May my scan will again be just the same but it's good to know Zaltrap is something to keep in mind.

Good luck
Donna
Dx 10/'07 age 54 3CC Sigmoid 1/25 nodes lap
Folfox 11/'07-4/'08
Vats Lung 7/'09 met
Vats Lung 7/'10 two mets, Irinotecan/Xeloda 9/'10-2/'11
Lung Resec, 3 1/2 rt ribs 4/'12
10-15 spots both lungs & 1.4cm nodule, 7/'12
xeloda & avastin 9/'12

SharonVegas
Posts: 6
Joined: Tue Oct 09, 2012 8:53 am

Re: my scan results were amazing w/zaltrap

Postby SharonVegas » Sun Mar 10, 2013 10:39 pm

Great news here about Zaltrap! I will do round 12 of 16 on Tuesday (FOLFIRI + Zaltrap). I was down to the wire on treatment options when this drug came out. I've been happy with the results. Did a scan after 8 treatments and show tumors were shrinking and CEA was cut in 1/2. Onc wanted to keep hitting it hard and recommended that I go 16 rounds with no break. It's been a doozy but I really feel its worth it. Hope I can get a breatk after treatment 16.
Ron


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