HAI stopped. Wish it was better news

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ptfly
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HAI stopped. Wish it was better news

Postby ptfly » Fri Sep 26, 2014 9:27 pm

I have debated about posting this since Monday but I will be out of pocket for most of this week so her goes.
DW had hai pump surgery last Halloween. First two treatments of fudr reduced the liver mets. These were the standard 289 unit high dose infusions. 10 days after the second fudr fill up we had to have the pump emptied due to very high Bilirubin/enzymes that caused sever itching and mild jaundice.
Once that cleared up our next few doses were 75 units of fudr. Scans showed no reduction and cea climbing. After reviewing the dose was raised to 120-150 of fudr. Mostly good scans. A little shrinkage but cea climbed from a low of 50 in feb 14.
8 weeks ago the systemic was stopped but hai continued. At four weeks we had a neutral scan but higher ldh and cea.
Then comes the past Sunday scan as mskcc.
Monday the oncologist came in with bad news that tumor growth in liver was substantial and the hai pump chemo would be stopped. I looked at the imaging and asked what the plan was. There was no plan. Nothing. No direction. No referral.
I was pulled myself together and got on the phone and within 5 minutes had the names and numbers of 3 doctors to contact. One in denver, one in dallas and one at mskcc.
My friend and I got the info together and contacted the dallas and denver teams. Before we arrived back home the next day I had voicemails and emails from both teams.
I am not writing this to stop anyone from pursuing this treatment. I had been told and saw first hand along our journey that you need to be ready with a back up plan because it may not be offered to you from this doctor. We met so many patients there with incredible stories of success. We saw it first hand. It just didn't happen for us.
So know our journey takes a turn.
We are checking her bilirubin levels every two days in hopes of starting some sort of treatment to stabilize this growth.
I am just dumbfounded at how quickly things went wrong and how completely alone we felt when we got the news.
Any input from my friends her would be greatly appreciated.
My closest friends here already know most of this and maybe more than I wrote.
I didn't want to bring down the sept. scans thread/group because it seems that so many got good results.
Thanks for listening to my rant.
Paul
Husband to Tracie with stage 4 CC. Liver Mets
DX 5-10-13. C resection 5-17-13. 5/17 LN
FOLFOX+AVI 6-11 thru 9-19-13
HAI pump on 10/31/2013 :) Stopped 9/14 :(
https://www.facebook.com/paul.turley.92
Passed peacefully in my arms at home on 11/11/14

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Voxx66
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Facebook Username: Michael Void Ward

Re: HAI stopped. Wish it was better news

Postby Voxx66 » Fri Sep 26, 2014 10:09 pm

I'm sorry this didn't work out but I am glad you aren't just giving up. If her liver numbers stabilize then there are other things you can try. I'll write more later but I am still processing the news.

Stay strong my friend.

V
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

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ptfly
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Re: HAI stopped. Wish it was better news

Postby ptfly » Fri Sep 26, 2014 10:40 pm

Thanks buddy.
Look fwd to your comments or pms.
good news is she has not burned the bridge on folfox.
onc wants to start avastin again. I hope avastin doesn't interfere with y90 or other possible treatments.
Still researching.
Paul
Husband to Tracie with stage 4 CC. Liver Mets
DX 5-10-13. C resection 5-17-13. 5/17 LN
FOLFOX+AVI 6-11 thru 9-19-13
HAI pump on 10/31/2013 :) Stopped 9/14 :(
https://www.facebook.com/paul.turley.92
Passed peacefully in my arms at home on 11/11/14

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Maia
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Re: HAI stopped. Wish it was better news

Postby Maia » Sat Sep 27, 2014 6:46 am

Ahhh, I didn't know this. (((Tracie))) and ((Paul))). Just hugs. :(
Well, next step... since you're researching -I posted something for Phuong (who had a 'liver scare' and hopefully didn't need that info later) about IRE/ NanoKnife and about Focused Ultrasound Ablation viewtopic.php?f=1&t=47964&p=360046#p360022 That would be to treat some lesions, maybe the more immediate threatening; for systemic (even if local) -have the doctors considered TACE or y90, is that what you're considering at other centers? And of course my customary question -have they considered some immunotherapy trial?
Your wife is blessed to have such a loyal and loving partner -I always feel that, each time I read a post from you. Keep strong.

hart2hart
Posts: 785
Joined: Wed Nov 23, 2011 10:46 pm

Re: HAI stopped. Wish it was better news

Postby hart2hart » Sat Sep 27, 2014 7:26 am

To my dear friend Paul and Tracie -

We are heartbroken other this news,,,,HOWEVER, We love that you are not wasting any time
getting second and third opinions! Paul - I so admire your tenacity. As Maia as said so many
other treatments out there for Tracie. Pete and I love you both very much and please
rant away anytime because here at the CC WE LOVE YOU!!! BIGTIME, Paul.

Look for my email, please.

Many, many hugs,



Julie and Pete
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - To Current

tammylayne
Posts: 2177
Joined: Fri Jul 16, 2010 9:24 am

Re: HAI stopped. Wish it was better news

Postby tammylayne » Sat Sep 27, 2014 9:22 am

I have no ideas or treatment recommendations as this is something I know nothing about...but I do want to send you my support and good thoughts. Kind words don't offer a cure, but I know how they make us FEEL...and that is also very important on this journey. So sending you strong thoughts and many gentle hugs that the medical teams you work with provide Tracie with everything she needs to fight this...
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

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Bev G
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Re: HAI stopped. Wish it was better news

Postby Bev G » Sat Sep 27, 2014 9:42 am

Hello Paul,

I wish I had some ideas, but this is far outside my knowledge. So, I'm sending you prayers for peace, prayers for patience, prayers that the correct path for your next approach will be lighted, and prayers that you feel all the love and support from your friends here.


Love,

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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ptfly
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Re: HAI stopped. Wish it was better news

Postby ptfly » Sat Sep 27, 2014 11:59 am

Thank you everyone.
Y90 is the path we are investigating currently but that will only happen when things are stabilized.
I did read about nanoknife, etc last night and did look up the two doctors that were mentioned in that post.
I will keep looking into all possible options and hope systemic will start on Monday and get us to the place we need to be.
Paul
Husband to Tracie with stage 4 CC. Liver Mets
DX 5-10-13. C resection 5-17-13. 5/17 LN
FOLFOX+AVI 6-11 thru 9-19-13
HAI pump on 10/31/2013 :) Stopped 9/14 :(
https://www.facebook.com/paul.turley.92
Passed peacefully in my arms at home on 11/11/14

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

Re: HAI stopped. Wish it was better news

Postby skypup » Sat Sep 27, 2014 12:04 pm

I'm so sorry to read this news. Thank goodness you have each other, and I hope you get a good new plan in action. Sounds like you are being very smart and very assertive. Best wishes!

mymom
Posts: 1258
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: HAI stopped. Wish it was better news

Postby mymom » Sat Sep 27, 2014 12:22 pm

Thinking of you guys. It totally sucks. I do not like you were not given any options and that you have to figure it out on your own. Keep us informed.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16 NED

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ptfly
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Re: HAI stopped. Wish it was better news

Postby ptfly » Sat Sep 27, 2014 12:23 pm

Local oncologist suggested looking into MD Anderson.

Also looking at these two options for Y90 down the road:

http://www.riaendovascular.com/our-phys ... s/nutting/

http://travisvanmeter.md.com/
Husband to Tracie with stage 4 CC. Liver Mets
DX 5-10-13. C resection 5-17-13. 5/17 LN
FOLFOX+AVI 6-11 thru 9-19-13
HAI pump on 10/31/2013 :) Stopped 9/14 :(
https://www.facebook.com/paul.turley.92
Passed peacefully in my arms at home on 11/11/14

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: HAI stopped. Wish it was better news

Postby Maia » Sat Sep 27, 2014 12:31 pm

Paul, if immediate ablation is not an option (that NIH trial I've mentioned on PM http://clinicalstudies.info.nih.gov/cgi ... -0079.html or any other option) and you're considering going for something systemic immediately... you may want to check

1. this immunotherapy trial, because it's aimed mainly to KRAS mutant CRC (which is the case here, right):

A Phase 1b Study of MPDL3280A (an Engineered Anti-PDL1 Antibody) in Combination With Cobimetinib in Patients With Locally Advanced or Metastatic Solid Tumors http://clinicaltrials.gov/ct2/show/study/NCT01988896
Tracie is already a patient at MSK, where it is recruiting... and you have a nearer location recruiting (Nashville, Tennessee; my guess is that is teh Vanderbilt-Ingram Cancer Center)
Discussed here: viewtopic.php?f=1&t=45485

2. This other NIH immunotherapy trial: it's not for a checkpoint inhibitor but for the other kind of personalized immunothearapy: Adoptive Cell Therapy (immune cells are removed from a patient, genetically modified or treated with chemicals to enhance their activity, and then re-introduced into the patient with the goal of improving the immune system’s anti-cancer response). it's the kind of thing that for now only the NIH or some big centers can do... no a pharmaceutical company, so there are few locations for that.

A Phase II Study Using Short-Term Cultured, CD8+-Enriched Autologous Tumor-infiltrating Lymphocytes Following a Lymphocyte Depleting Regimen in Metastatic Digestive Tract Cancers http://www.clinicaltrials.gov/ct2/show/NCT01174121
The outcomes for blood cancers have been spectacular and for solid tumours, the results are just starting. You can read about one outcome (solid tumour) from that trial here: New York Times, May 8 2014: http://www.nytimes.com/2014/05/09/healt ... &smv2&_r=1
(We discussed that here: viewtopic.php?f=1&t=46555 )

pfCml73183
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Facebook Username: Celeste Marie Comeau
Location: FL

Re: HAI stopped. Wish it was better news

Postby pfCml73183 » Sat Sep 27, 2014 2:44 pm

Paul and Tracie, I am so disappointed to read your news. I so hoped things would turn around for Tracie this time.
Please know you are both in my thoughts and prayers.
Please give Tracie a warm, soft hug from me. Celeste
Wife and BF to Peter, 54
mCRC/IV/BRAF+
Erbitux and Urelumab trial @MSKCC 3/15
went home 5/8/15

justin case
Posts: 4219
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: HAI stopped. Wish it was better news

Postby justin case » Sat Sep 27, 2014 3:16 pm

ptfly wrote:Local oncologist suggested looking into MD Anderson.

Also looking at these two options for Y90 down the road:

http://www.riaendovascular.com/our-phys ... s/nutting/

http://travisvanmeter.md.com/

Paul, I don't know if you were talking about M.D. Anderson in Houston, but down here lodging and overall costs for a visit are less frightening than in New York.
I wish you well in your endeavor, wherever you will get the most beneficial treatment.
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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chrissyrice
Posts: 1170
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: HAI stopped. Wish it was better news

Postby chrissyrice » Sat Sep 27, 2014 6:55 pm

Prayers for you both.
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months


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