HAI stopped. Wish it was better news
Re: HAI stopped. Wish it was better news
I'm so sorry to hear your news. Like the others I truly admire how you are proactively handling things. I don't have much firsthand knowledge on liver tumors, but have you looked at beatlivertumors.org? There is a ton on info all in one place and all dedicated to liver mets. I'm FB friends with the creator of the site, and she always seems to be willing to help...
DH DX 10/11 st IV unkown prmry
FFOX 12/11
HIPEC 3/12
FFOX 5/12
7/12 FFIRI
12/12 xeloda
1/13 resection
2/13 FFIRI
4/13 5FU/Avastin
9/13 recurrence, failed surgery
Abdominal fistula
11/13 gemzar, heart attack
12/13 Carbo
2/14 Radiation
3/28/2014 passed
FFOX 12/11
HIPEC 3/12
FFOX 5/12
7/12 FFIRI
12/12 xeloda
1/13 resection
2/13 FFIRI
4/13 5FU/Avastin
9/13 recurrence, failed surgery
Abdominal fistula
11/13 gemzar, heart attack
12/13 Carbo
2/14 Radiation
3/28/2014 passed
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Stanfordmom
- Posts: 612
- Joined: Wed May 14, 2014 1:32 am
Re: HAI stopped. Wish it was better news
Paul,
Sorry to hear this. Hugs to you and your DW.
I am hoping the other options you checked into will work out for Tracie. You both will be in my thoughts and prayers.
Sha
Sorry to hear this. Hugs to you and your DW.
I am hoping the other options you checked into will work out for Tracie. You both will be in my thoughts and prayers.
Sha
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!
Re: HAI stopped. Wish it was better news
I am so disappointed to read this... Both that HAI isn't working for her anymore, and that she wasn't given any direction. Tracie is lucky to have you advocating for her. Hoping she is able to get back on some sort of effective treatment soon...
stg IV 4/2013 @34 - liver, ovary/peritoneum
Lots of chemo, surgery and good luck - still doing well 03/2016...
Lots of chemo, surgery and good luck - still doing well 03/2016...
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Jack&KatiesMommy
- Posts: 640
- Joined: Wed Dec 21, 2011 1:08 pm
- Location: Columbus, OH
Re: HAI stopped. Wish it was better news
Paul:
I am so sorry to hear this. This is a huge fear....and I understand how you can feel alone and left hanging. My former liver surgeon at MDA was such a supporter...he told me I was going to be cured....things were amazing...until he tried to do my resection and discovered dozens and dozens of tiny tumors scattered throughout my liver. He closed me up and said he was sorry and tha the had no other plans...left me sitting there after surgery dumbfounded. I couldn't believe it. I aksed him about options and he said he frankly didn't know of any. I don't think I ever felt that alone.
So, I did my own research and sent my records out for second & third opinions right there from my hospital bed. And now I am on to something that seems to be working. You are doing the right thing. Keep researching (look at what Maia has shared) and fighting for your beautiful wife. I will be praying for you both.
(((HUGS)))
Cynthia
I am so sorry to hear this. This is a huge fear....and I understand how you can feel alone and left hanging. My former liver surgeon at MDA was such a supporter...he told me I was going to be cured....things were amazing...until he tried to do my resection and discovered dozens and dozens of tiny tumors scattered throughout my liver. He closed me up and said he was sorry and tha the had no other plans...left me sitting there after surgery dumbfounded. I couldn't believe it. I aksed him about options and he said he frankly didn't know of any. I don't think I ever felt that alone.
So, I did my own research and sent my records out for second & third opinions right there from my hospital bed. And now I am on to something that seems to be working. You are doing the right thing. Keep researching (look at what Maia has shared) and fighting for your beautiful wife. I will be praying for you both.
(((HUGS)))
Cynthia
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,
Re: HAI stopped. Wish it was better news
I have nothing constructive to add, other than to say that you are not alone. Cancer is such a lonely journey, so incredibly lonely at times, but even in that loneliness, you should always know that there are others who understand -- perhaps not the degree that you feel at any particular moment because we are at a different stage in our journeys, but we understand. I wish you and your wife the best as you move forward.
DX July 2013, 37yo
12 of 68 LN
Stage IV w/ drop peri met
Folfox 8/12/13
Clean scans 1/24/14
Rising CEA 2/13/14
HIPEC 3/13/14
Folfiri 4/21/14
Recurrence in lungs 12/19/14
Xeloda & Avastin
Follow my blog: http://julieyipwilliams.wordpress.com/about/
12 of 68 LN
Stage IV w/ drop peri met
Folfox 8/12/13
Clean scans 1/24/14
Rising CEA 2/13/14
HIPEC 3/13/14
Folfiri 4/21/14
Recurrence in lungs 12/19/14
Xeloda & Avastin
Follow my blog: http://julieyipwilliams.wordpress.com/about/
Re: HAI stopped. Wish it was better news
Dear Paul,
I just wanted to add my voice to all the words of encouragement. I hope the second and third opinions work out for your dear Tracie. Although your doctor didn't offer options, it's awesome that the amazing members of colon club did.
Best wishes to you both,
Sue.
I just wanted to add my voice to all the words of encouragement. I hope the second and third opinions work out for your dear Tracie. Although your doctor didn't offer options, it's awesome that the amazing members of colon club did.
Best wishes to you both,
Sue.
Daughter to Dad age 67 @dx, Dec. 2013 (now 73)
Stage IV cecum, 4 liver mets, CEA 21.8
MSS, KRAS mutant (G13D), MLH1 mutant (V384D), and TP53 mutant (G245S)
1/14 FOLFOXIRI, 2x
2/14 FOLFOX, 1x
3/14 Right hemicolectomy, 2/38 nodes
4/14 FOLFOX, 4x
8/14 Liver resection
9/14 Liver tumor growth: microwave ablation
10/14 FOLFIRI, 6x
1/15 NED
2/16 8 to 10 lesions in lungs
3/16 Avastin + 5FU, 72x
4/19 Growth in lungs, lymph nodes. FOLFIRI + Avastin, 4x (CEA 12.4)
7/19 Started Stivarga + Opdivo
10/19 Start Hospice
Stage IV cecum, 4 liver mets, CEA 21.8
MSS, KRAS mutant (G13D), MLH1 mutant (V384D), and TP53 mutant (G245S)
1/14 FOLFOXIRI, 2x
2/14 FOLFOX, 1x
3/14 Right hemicolectomy, 2/38 nodes
4/14 FOLFOX, 4x
8/14 Liver resection
9/14 Liver tumor growth: microwave ablation
10/14 FOLFIRI, 6x
1/15 NED
2/16 8 to 10 lesions in lungs
3/16 Avastin + 5FU, 72x
4/19 Growth in lungs, lymph nodes. FOLFIRI + Avastin, 4x (CEA 12.4)
7/19 Started Stivarga + Opdivo
10/19 Start Hospice
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stephenlamb
- Posts: 148
- Joined: Wed Aug 29, 2012 6:41 am
- Location: ohio
Re: HAI stopped. Wish it was better news
F##k cancer and the horse or road n on!!!!
Wife age 29 dx 7/5/12 stage 4
Mets liver ovary
Hai pump Feb15 2013 folfiri start
1st stage liver resection Aug 13
2nd stage liver Dec 10 ned just 5fu
3/14 peritoneal met folriri/erb
Mets liver ovary
Hai pump Feb15 2013 folfiri start
1st stage liver resection Aug 13
2nd stage liver Dec 10 ned just 5fu
3/14 peritoneal met folriri/erb
Re: HAI stopped. Wish it was better news
Tracie & Paul,
I am shocked MSK would leave you hanging like this. I will pray you get a quick plan in place.
Hugs to you both,
Christine
I am shocked MSK would leave you hanging like this. I will pray you get a quick plan in place.
Hugs to you both,
Christine
Stage IV CC 2010
Re: HAI stopped. Wish it was better news
Dearest Paul and Tracie -
Pete and I are sending you lots of hugs and love.
I hope you caught the hugs!
We're hoping that you have a new game plan in place for Tracie. Please keep us updated.
Love,
Julie and Pete
Pete and I are sending you lots of hugs and love.
I hope you caught the hugs!
We're hoping that you have a new game plan in place for Tracie. Please keep us updated.
Love,
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 - 1/2024
Hai Pump/Port Removed - 1/2020
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 - 1/2024
Hai Pump/Port Removed - 1/2020
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ptfly
- Posts: 392
- Joined: Wed May 29, 2013 4:38 pm
- Facebook Username: Paul Turley little rock, ar
- Location: Little Rock, AR
- Contact:
Re: HAI stopped. Wish it was better news
SMR wrote:I'm so sorry to hear your news. Like the others I truly admire how you are proactively handling things. I don't have much firsthand knowledge on liver tumors, but have you looked at beatlivertumors.org? There is a ton on info all in one place and all dedicated to liver mets. I'm FB friends with the creator of the site, and she always seems to be willing to help...
Suzanne has helped us greatly. She dropped by our house a couple of months ago to inspire us.
I am also her FB friend.
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
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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ptfly
- Posts: 392
- Joined: Wed May 29, 2013 4:38 pm
- Facebook Username: Paul Turley little rock, ar
- Location: Little Rock, AR
- Contact:
Re: HAI stopped. Wish it was better news
We go for a blood transfusion in the morning and hope that gets her feeling better. That will be a first for us.
She started folfox with avastin this Monday.
Our plan is to get the systemic started as we navigate our options.
Thanks for the encouragement everyone.
Paul
She started folfox with avastin this Monday.
Our plan is to get the systemic started as we navigate our options.
Thanks for the encouragement everyone.
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
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
-
ptfly
- Posts: 392
- Joined: Wed May 29, 2013 4:38 pm
- Facebook Username: Paul Turley little rock, ar
- Location: Little Rock, AR
- Contact:
Re: HAI stopped. Wish it was better news
Two bags of red blood cells today. piece of cake.
Hope it gives her some strength.
So thankful her mother drove up to stay with her through yesterday while I had to travel.
Focusing on the day by day tests and looking at the long term plans.
Hope it gives her some strength.
So thankful her mother drove up to stay with her through yesterday while I had to travel.
Focusing on the day by day tests and looking at the long term plans.
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
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
-
ptfly
- Posts: 392
- Joined: Wed May 29, 2013 4:38 pm
- Facebook Username: Paul Turley little rock, ar
- Location: Little Rock, AR
- Contact:
Re: HAI stopped. Wish it was better news
stephenlamb wrote:F##k cancer and the horse or road n on!!!!
and then some !!!!!
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
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
-
ptfly
- Posts: 392
- Joined: Wed May 29, 2013 4:38 pm
- Facebook Username: Paul Turley little rock, ar
- Location: Little Rock, AR
- Contact:
Re: HAI stopped. Wish it was better news
hart2hart wrote:Dearest Paul and Tracie -
Pete and I are sending you lots of hugs and love.
I hope you caught the hugs!
We're hoping that you have a new game plan in place for Tracie. Please keep us updated.
Love,
Julie and Pete
Thank you Julie for your ongoing support.
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
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
Re: HAI stopped. Wish it was better news
I am so sorry the HAI pump stopped working. I hope the FOLFOX is able to kick those cancer cells into the next universe.
(((HUGS))) to you both.
Lee
(((HUGS))) to you both.
Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!
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