atezolizumab (Mpdl3280a)& avastin phase 1 trial update

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StephenWinsToday
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atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby StephenWinsToday » Mon Jul 13, 2015 11:04 pm

So, although I still haven't found someone else on this trial...I thought I would drop a line here and update a little.

So far I have had two infusions of the PDL-1 inhibitor Atexolizumab, or MPDL3280a, and avastin. The week after my first infusion I had a weeklong fever that reached 104 at its worst. Chilled, tremendous joint pain, sweats...it was a real good time. I was in the hospital for about 4 days and had every test ran on me possible. No signs of infection anywhere. It was chalked up to an immune response to the medicine. It was suggested that my immune system was probably recognizing the cancer and going to war. Sweet. I'll take that!

The second infusion left me slightly tired and very close to nauseous for two days. Then...nothing. I felt wonderful. The tumor pain I was having on my right side was completely gone. My back pain was gone. I hadn't felt that well in a very long time...thank God I happened to have a trip to Mexico planned during this time. The trip went off without a hiccup! Then I broke out in a rash. It covered my torso in small white spots...thankfully the rash wasn't itchy. After three days, it was gone. Was it anothe immune response? Who knows.

I had my first scan today. I'm responding to the drug. Wow...sometimes you want something so bad...then when you get it, you aren't even sure how to feel. My tumor measured 45x32mm a month and a half ago...now it's 37x25mm. The sattelite nodules are shrinking and disappearing. My onc actually said, "we have gained control of this. Which is nice to see."

NICE TO SEE??? Ha! It's AMAZING. Thank you, Doctor!

I go in to meet with him again this Thursday...then I'm due for another infusion. Side effects, beyond the initial fever and rash, have been minimal. Some diarrhea, some tiredness, sandy eyes....that's about it. I feel physically strong, I'm eating everything in sight, and I finally feel.....well. I have a sense of wellness. Finally.

Feel free to ask anything! I heard this drug just had amazing results with bladder cancer and now the drug is trying to get FDA approval by the end of the year. You can google Atezolizumab for more news. This drug has been found to work mainly on those with msi-high tumors. So lynch syndrome people, like myself, have a better chance at responding...but some sporadic CrCs are msi-go as well...I believe around 10% are. I hope this gave you all some insight on this trial and where immunotherapy is heading. I was terrified to enter this trial...but I'm so glad I did. I hope my experience can act as building blocks for future warriors.

Fight on!
7/15 DX'd at age 28 w/stage 4 crc. Met to mesentery. Also lynch+
7/15 right hemicolectomy
8/15 started 12 rounds FOLFOX.
2/15 Nanoknife. Gallbladder removal. resections. Complications landed me in ICU for 1 week. 8 blood transfusions.
5/15 Nanoknife failed. Enrolled in phase 1 trial of MPDL3280a (Atezolizumab) & Avastin.
7/15 CT shows I am responding to trial drug. All tumors and nodules shrinking.
8/15 CT scan shows stability of all nodules and target tumor
10/15 CT scan shows continued stability.

cathy123
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Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby cathy123 » Tue Jul 14, 2015 4:13 am

Awesome news. I hope the met continues to shrink, and it is great that you are feeling good while in treatment.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

Nik Colon

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby Nik Colon » Tue Jul 14, 2015 4:23 am

Hey there, I didn't know you posted here too! Just wanted to say hi again. Best wishes to you :)

Maddielolo
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Joined: Tue Apr 08, 2014 4:57 pm

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby Maddielolo » Tue Jul 14, 2015 8:15 am

Great news on many levels! Keep us posted, but enjoy feeling good too

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DK37
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Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby DK37 » Tue Jul 14, 2015 10:04 am

Thank you for being a trailblazer and also importantly for sharing your experiences on the trial with the rest of us!
CONGRATS on the good response!! Woo-hoo!
(and yes, the rash is most likely a sign of immune activation... :D )
-DK
6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
7/12 FOLFOX/FOLFIRI
2/13 NED!
8/13 Enlarged lymphs - Stable
10/14 Stage IV. Lung & Lymph mets. 5-FU+bev
3/15 Cetuximab
11/15 FOLFIRI + bev
11/16 Signs of FOLFIRI resistance (Lymph mets)
1/17 Palliative radiation for resistant mets
2/17 FOLFIRI + bev + Maraviroc (off-label)
3/17 FOLFIRI + Erbitux + Maraviroc (off-label)
MSS-CRC Clinical Trial Finder: http://trialfinder.fightcrc.org/
2016 Colondar 2.0 Model
DK37 Science Posts List

peanut_8
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Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby peanut_8 » Tue Jul 14, 2015 10:48 am

That is so encouraging Stephen. I'm very happy for you. How many infusions are you going to get?
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

StephenWinsToday
Posts: 39
Joined: Mon Jun 22, 2015 12:08 pm
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Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby StephenWinsToday » Tue Jul 14, 2015 10:58 am

Peanut-

The trial runs for a year, so as long as I don't develop an auto immune issue...I should have about 16-17 infusions. One question I have for my oncologist is what happens if I'm still doing really well after a year? Surely they won't take the drug away from me, right? However, it seems like FDA approval is coming swiftly...so perhaps I won't have to worry about it and my insurance will pick up the tab. Either way...I woke up today feeling like I could breathe. Finally.
7/15 DX'd at age 28 w/stage 4 crc. Met to mesentery. Also lynch+
7/15 right hemicolectomy
8/15 started 12 rounds FOLFOX.
2/15 Nanoknife. Gallbladder removal. resections. Complications landed me in ICU for 1 week. 8 blood transfusions.
5/15 Nanoknife failed. Enrolled in phase 1 trial of MPDL3280a (Atezolizumab) & Avastin.
7/15 CT shows I am responding to trial drug. All tumors and nodules shrinking.
8/15 CT scan shows stability of all nodules and target tumor
10/15 CT scan shows continued stability.

StephenWinsToday
Posts: 39
Joined: Mon Jun 22, 2015 12:08 pm
Facebook Username: Stephen Savage-Estrada

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby StephenWinsToday » Thu Aug 27, 2015 11:24 am

Well, my second scan was last week. I just met with my onc...and everyone is very happy! My scan showed stability, which may not have been what I was WANTING, but Lord knows I'll take it! I seem to have a blood clot in one of my mesenteric veins, but they believe that to be a product of my last surgery. No one is concerned about it, so we will just keep an eye on it. Other than that, my blood work is outstanding. Pain level is a 0. Energy level is an 11!

I was told today that another guy on my trial has been doing it for 18 months with no signs of growth or spread...so that's really encouraging. I'm sitting in the chair right now, getting infusion #5...so I guess I'll just keep on keepin' on!

I will say this: this trial drug has changed my life. I used to think trials were for those of us that are nearing the end and need one last hope. I now think the opposite. I encourage everyone to at least research some trials they may be interested in and keep those trial names saved somewhere. Even if the drug didn't work for me, I still have a whole list of approved treatments to back me up. Thankfully, I'm in a great position right now...and if the day comes that mpdl3280a stops workings...I can go back to standard of care treatments.
7/15 DX'd at age 28 w/stage 4 crc. Met to mesentery. Also lynch+
7/15 right hemicolectomy
8/15 started 12 rounds FOLFOX.
2/15 Nanoknife. Gallbladder removal. resections. Complications landed me in ICU for 1 week. 8 blood transfusions.
5/15 Nanoknife failed. Enrolled in phase 1 trial of MPDL3280a (Atezolizumab) & Avastin.
7/15 CT shows I am responding to trial drug. All tumors and nodules shrinking.
8/15 CT scan shows stability of all nodules and target tumor
10/15 CT scan shows continued stability.

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Crystald
Posts: 142
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Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby Crystald » Thu Aug 27, 2015 12:04 pm

Most excellent news! Especially finding out someone else has been on the treatment for 18 months and is still stable!

Thanks for posting the update. Thanks for the courage you have to undertake this trial.
Age 58
DX Jul 2014 Stage IVb CRC metastatic, unknown primary, CEA 1826
Inoperable, Chemo for life
KRASwt
MSI: not tested
29 Jul 14 Port
30 Jul - 19 Jan 2015 Folfox (12 cycles) CEA 164.5
9 Feb 15 - 20 May Flofiri failed (6 cycles) CEA 417.0
17 Jul 15 - Initiated Vectibix CEA 555.5
17 Jul 2015 - 14 Jan 2016 Vectibix
8 Feb 2016 - 11 Apr 2016 Xeloda
26 Apr 2016 Hospice

jortego128
Posts: 288
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Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby jortego128 » Thu Aug 27, 2015 6:37 pm

Awesome news!! Keep fighting the good fight!

BTW, I assume youre tumors are MSI?

Thanks,
Josh
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016

Nik Colon

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby Nik Colon » Fri Aug 28, 2015 8:15 am

Great news! Best wishes :)

StephenWinsToday
Posts: 39
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Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby StephenWinsToday » Fri Aug 28, 2015 10:22 am

@josh-- I am lynch positive (mlh1), so I am msi-high.
7/15 DX'd at age 28 w/stage 4 crc. Met to mesentery. Also lynch+
7/15 right hemicolectomy
8/15 started 12 rounds FOLFOX.
2/15 Nanoknife. Gallbladder removal. resections. Complications landed me in ICU for 1 week. 8 blood transfusions.
5/15 Nanoknife failed. Enrolled in phase 1 trial of MPDL3280a (Atezolizumab) & Avastin.
7/15 CT shows I am responding to trial drug. All tumors and nodules shrinking.
8/15 CT scan shows stability of all nodules and target tumor
10/15 CT scan shows continued stability.

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Sleen
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Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby Sleen » Fri Aug 28, 2015 12:53 pm

StephenWinsToday wrote:I used to think trials were for those of us that are nearing the end and need one last hope. I now think the opposite.


I've encountered so many people who think trials should be saved as the last resort. Does this idea come from doctors? or...where? I would've done just about ANY trial to avoid more chemo. My onc was no help in finding a trial, but at least she didn't discourage me from finding one.

Is it the risk involved that makes people want to wait?
What was it for you?

Celine
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
6 mo. f/u PR confirmed (Jan 2016)
Jul 2015: NIH TIL trial NCT01174121 NCI/NIH Surgery Branch FAQ
Dec 2014 confirmed stage IV w/bilateral lung mets
FOLFOX + Radiation (bladder)
KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 33 yrs. kids: 27, 24, 20, 15, 13
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

StephenWinsToday
Posts: 39
Joined: Mon Jun 22, 2015 12:08 pm
Facebook Username: Stephen Savage-Estrada

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby StephenWinsToday » Fri Aug 28, 2015 4:16 pm

Celine-

I know for me...everything happened so fast in the year since my diagnoses. I knew nothing about trials pre-dx (why would I need to?) but when I started reading about them...it always seemed like people were dying. Trial data isn't written for normal people like me....so reading it added to the confusion, especially when it seemed like people were only adding months to their lives.

My new oncologist was the one who turned all that around for me. Dr. Messersmith pretty much told me I was doing the trial, lol. I suppose I also never understood why people would give up "proven" therapies in favor of something experimental. Needless to say, I am a changed man when it comes to trials. I now understand the need for healthy patients in trials, and I'm glad I was set straight, so to speak, about trials.

I'm not sure why others are so scared of trials...but if I had to guess, I would think most people are scared of the unknown. But it seems like things are moving so quickly now with immunotherapy...people are now jumping at the chance to find out their biomarkers and enroll in a trial.
7/15 DX'd at age 28 w/stage 4 crc. Met to mesentery. Also lynch+
7/15 right hemicolectomy
8/15 started 12 rounds FOLFOX.
2/15 Nanoknife. Gallbladder removal. resections. Complications landed me in ICU for 1 week. 8 blood transfusions.
5/15 Nanoknife failed. Enrolled in phase 1 trial of MPDL3280a (Atezolizumab) & Avastin.
7/15 CT shows I am responding to trial drug. All tumors and nodules shrinking.
8/15 CT scan shows stability of all nodules and target tumor
10/15 CT scan shows continued stability.

StephenWinsToday
Posts: 39
Joined: Mon Jun 22, 2015 12:08 pm
Facebook Username: Stephen Savage-Estrada

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby StephenWinsToday » Thu Oct 01, 2015 7:05 pm

Well, I had my third scan today. The drug is holding everything in stability. It's questionable if some nodules are shrinking...but nothing is growing, so that's all that matters!!

My side effects are still predominately diarrhea and sandy eyes some mornings. I've been having weird abdominal cramps, sounds, and gurgling the past few days...and it was starting to worry me. But this scan confirmed that I shouldn't be worried...and I'll take that.
7/15 DX'd at age 28 w/stage 4 crc. Met to mesentery. Also lynch+
7/15 right hemicolectomy
8/15 started 12 rounds FOLFOX.
2/15 Nanoknife. Gallbladder removal. resections. Complications landed me in ICU for 1 week. 8 blood transfusions.
5/15 Nanoknife failed. Enrolled in phase 1 trial of MPDL3280a (Atezolizumab) & Avastin.
7/15 CT shows I am responding to trial drug. All tumors and nodules shrinking.
8/15 CT scan shows stability of all nodules and target tumor
10/15 CT scan shows continued stability.


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