I need a little hope

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pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: I need a little hope

Postby pdp497 » Sat Jul 22, 2017 6:40 pm

I was able to schedule an appointment at MD Anderson for Augustn3rdnsonInwill now definitely wait to start treatment until after I see them. Currently I am awaiting the results of the genetic testing on the tumor. The waiting is hard but it feels good to have a date to look forward to. Anyone that's been to MD Anderson, they told us to be ready to spend 5 days in Houston during the first visit, had this been your experience? Thanks for any insight you can offer.
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

Basil
Posts: 213
Joined: Thu Mar 16, 2017 12:33 pm

Re: I need a little hope

Postby Basil » Sat Jul 22, 2017 10:24 pm

No idea on the wait times but - and I may have already said this - but my rec would be to request a consult with dr. George Chang. He's my surgeon and I have a lot of confidence in him.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

kandj
Posts: 200
Joined: Sun Sep 27, 2015 11:29 am

Re: I need a little hope

Postby kandj » Tue Jul 25, 2017 3:44 pm

pdp497 wrote:I was able to schedule an appointment at MD Anderson for Augustn3rdnsonInwill now definitely wait to start treatment until after I see them. Currently I am awaiting the results of the genetic testing on the tumor. The waiting is hard but it feels good to have a date to look forward to. Anyone that's been to MD Anderson, they told us to be ready to spend 5 days in Houston during the first visit, had this been your experience? Thanks for any insight you can offer.


My husband went to MD Anderson for a second opinion. It was not a good experience. They basically said he was inoperable and would not change to be so. We got a third opinion at MSKCC in NYC and they took him on. He was NED for a year after his surgery, but unfortunately has had a recurrence. But, they are not giving up on him and that is more than I can say for MDA. Sucks too as we live 30 mins outside of Houston.

All that said, if MDA says no or tells you chemo for life, try to get in with Dr. Kemeny at Memorial Sloan Kettering. She will fight for you without abandon.
wife to DH, Diagnosed at 36yo with stage 4 CRC August 2015 mom to 3 boys
numerous mets throughout liver, unresectable currently
Folfox +avastin aug 15-Nov 15
Lynch and MAP negative
Folfiri starting Jan 2016
Primary resection and HAI pump placed Dec 2015 at MSKCC, FUDR started Dec 2015
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 3 Liver mets and one possible lung met. Focusing on Liver mets for now. Back on FOLFOX to get them shrunk!

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: I need a little hope

Postby pdp497 » Fri Aug 04, 2017 6:02 pm

Currently in Houston at MD Anderson. They are starting me on Folfox on Wednesday. Just took new scans yesterday and waiting to head back about the results. Anyone with a 5-FU pump know if you are able to detach yourself or do you have to go back to the hospital after the 46 hours?
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

tater
Posts: 31
Joined: Wed Jul 19, 2017 5:53 pm

Re: I need a little hope

Postby tater » Fri Aug 04, 2017 6:33 pm

pdp497 wrote:Currently in Houston at MD Anderson. They are starting me on Folfox on Wednesday. Just took new scans yesterday and waiting to head back about the results. Anyone with a 5-FU pump know if you are able to detach yourself or do you have to go back to the hospital after the 46 hours?



My wife goes back to the clinic to get un-hooked. Sometimes she will get fluid that day and a spot to boost white blood count. I have been told that they can show me how to un-hook it but where we are close to clinic I haven't worried about it.

Let me know about MD Anderson we are toying with the idea of going. We are going to our local cancer institute on Monday. I always get nurveous on second op ion days as I usually get depressing news.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 17
Stage 4 Liver mets 3(5mm-6mm) and iliac node July 17, 17
FOLFOX + Avistan July 18 CEA 2.3

Basil
Posts: 213
Joined: Thu Mar 16, 2017 12:33 pm

Re: I need a little hope

Postby Basil » Fri Aug 04, 2017 6:49 pm

pdp497 wrote:Currently in Houston at MD Anderson. They are starting me on Folfox on Wednesday. Just took new scans yesterday and waiting to head back about the results. Anyone with a 5-FU pump know if you are able to detach yourself or do you have to go back to the hospital after the 46 hours?


They can train you to detach yourself. It's fairly simple but they'll want to give you formal training.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: I need a little hope

Postby pdp497 » Tue Aug 08, 2017 1:41 pm

Well I got my second opinion, pretty much same as the first. Not really sure where to go from here it just feels like with surgery off the table there is no real hope of ever reaching remission. They think the liver tumors are too spread out as well as lymph nodes in multiple regions making the possibility of clearing everything unlikely.
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

Lee
Posts: 5297
Joined: Sun Apr 16, 2006 4:09 pm

Re: I need a little hope

Postby Lee » Tue Aug 08, 2017 5:17 pm

kandj wrote:My husband went to MD Anderson for a second opinion. It was not a good experience. They basically said he was inoperable and would not change to be so. We got a third opinion at MSKCC in NYC and they took him on. He was NED for a year after his surgery, but unfortunately has had a recurrence. But, they are not giving up on him and that is more than I can say for MDA. Sucks too as we live 30 mins outside of Houston.

All that said, if MDA says no or tells you chemo for life, try to get in with Dr. Kemeny at Memorial Sloan Kettering. She will fight for you without abandon.


Sorry about your visit with MD Anderson. As Kandj posted earlier, check with Sloan Kittering Memorial Hospital (MSKCC) in New York City. Dr, Kemeny has put a lot of people into NED who were told there was nothing that could be done.

Also start checking Immunotherapy as a possible option. Keytruda has helped a lot of people on this forum.

Don't give up the hope just yet.

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 - 10 years and counting!

User avatar
peanut_8
Posts: 2168
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: I need a little hope

Postby peanut_8 » Wed Aug 09, 2017 1:34 am

kandj wrote:
pdp497 wrote:I was able to schedule an appointment at MD Anderson for Augustn3rdnsonInwill now definitely wait to start treatment until after I see them. Currently I am awaiting the results of the genetic testing on the tumor. The waiting is hard but it feels good to have a date to look forward to. Anyone that's been to MD Anderson, they told us to be ready to spend 5 days in Houston during the first visit, had this been your experience? Thanks for any insight you can offer.


My husband went to MD Anderson for a second opinion. It was not a good experience. They basically said he was inoperable and would not change to be so. We got a third opinion at MSKCC in NYC and they took him on. He was NED for a year after his surgery, but unfortunately has had a recurrence. But, they are not giving up on him and that is more than I can say for MDA. Sucks too as we live 30 mins outside of Houston.

All that said, if MDA says no or tells you chemo for life, try to get in with Dr. Kemeny at Memorial Sloan Kettering. She will fight for you without abandon.


pdp497

I'm sorry that your appointment at MD Anderson didn't work out. I wanted to echo what kanji has posted here. Dr. Kemeny at MSKCC in NYC has been getting really impressive results for stage 4 CRC patients with liver mets, using the HAI pump. Apparently 80% survival rates at the 5 year mark. Here's a link for reference...

The 5 year survival for HAI is 80%. That's impressive.

http://abstracts.asco.org/156/AbstView_156_147982.html
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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

Re: I need a little hope

Postby Maia » Wed Aug 09, 2017 12:14 pm

Sorry to hear the MD Anderson visit went like that.

I would consult any of the clinical trials centers in TX that are not the MD Anderson, for them to check if some immunotherapy-based trial is available for your case.



Texas Oncology, P.A. - Austin Recruiting
Austin, Texas, United States, 78705
Principal Investigator: Jason Melear

Mary Crowley Cancer Research Centers Recruiting
Dallas, Texas, United States, 75230
Principal Investigator: John Nemunaitis

Texas Oncology, P.A. - Fort Worth Recruiting
Fort Worth, Texas, United States, 76104
Principal Investigator: Stephen Richey

Oncology Consultants, P.A. Active, not recruiting
Houston, Texas, United States, 77030

University of Texas M. D. Anderson Cancer Center - Investigational Cancer Therapeutics Recruiting
Houston, Texas, United States, 77030
Contact: Alphi Kuriakose 713-794-4625 avkuriakose@mdanderson.org
Principal Investigator: Aung Naing

South Texas Accelerated Research Therapeutics, LLC Recruiting
San Antonio, Texas, United States, 78229
Principal Investigator: Kyriakos Papadopoulos

Cancer Care Network of South Texas - SAT&BC-M oak Recruiting
San Antonio, Texas, United States, 78258
Principal Investigator: Sharon Wilks

Texas Oncology, P.A. - Tyler Recruiting
Tyler, Texas, United States, 75702
Principal Investigator: Donald Richards

Those are the location, for example, for this trial: https://clinicaltrials.gov/ct2/show/study/NCT02517398
That is an immunotherapy, same trial ongoing at the National Cancer Institute in Bethesda, Maryland. Many locations in TX.

You can find others in the Clinical Trial finder in my signature.
It might be tricky to find a trial that doesn't ask for prior failure of other lines of therapy, but it is not impossible.

Achilles Torn
Posts: 90
Joined: Fri Dec 16, 2016 2:41 pm

Re: I need a little hope

Postby Achilles Torn » Wed Aug 09, 2017 5:00 pm

I'm echoing a bit here...but if you search around you will find many examples of patients with extensive liver mets who were first believed inoperable but were able, through a good response to Chemo, to have surgery.
You may well be one of those people and have every reason to hope.

AT
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: I need a little hope

Postby pdp497 » Wed Aug 09, 2017 6:39 pm

Thank you to everyone for the suggestions. I am like looking into all options and also hold out some hope chemo may be successful for me. It can just be so hard when your hit with round after round of bad news. I really appreciate everyone taking the time to respond it certainly makes me feel more hope and less alone so thank you all.
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

Lee
Posts: 5297
Joined: Sun Apr 16, 2006 4:09 pm

Re: I need a little hope

Postby Lee » Wed Aug 09, 2017 7:04 pm

You might want to read Sleen post here. She was given months to live and is NED today

viewtopic.php?t=49736

BeansMama was told surgery was not an option for her, thanks to Keytruda, Larry (tumor) is getting his eviction notice. Her signature line tells the story.

viewtopic.php?f=1&t=58169&hilit=beansMama

Yes you have been gut punched twice now, butt don't put your bucket list together just yet.

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 - 10 years and counting!

kandj
Posts: 200
Joined: Sun Sep 27, 2015 11:29 am

Re: I need a little hope

Postby kandj » Sat Aug 12, 2017 1:50 pm

pdp497 wrote:Well I got my second opinion, pretty much same as the first. Not really sure where to go from here it just feels like with surgery off the table there is no real hope of ever reaching remission. They think the liver tumors are too spread out as well as lymph nodes in multiple regions making the possibility of clearing everything unlikely.


Did they do a PET or regular CT scan? What are they basing the lymph node involvement on? I know my husband was told there were some suspect aortic nodes but when they actually took them out the surgeon said they were squishy and he didn't think they were cancerous. Pathology confirmed they were benign.
wife to DH, Diagnosed at 36yo with stage 4 CRC August 2015 mom to 3 boys
numerous mets throughout liver, unresectable currently
Folfox +avastin aug 15-Nov 15
Lynch and MAP negative
Folfiri starting Jan 2016
Primary resection and HAI pump placed Dec 2015 at MSKCC, FUDR started Dec 2015
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 3 Liver mets and one possible lung met. Focusing on Liver mets for now. Back on FOLFOX to get them shrunk!

kandj
Posts: 200
Joined: Sun Sep 27, 2015 11:29 am

Re: I need a little hope

Postby kandj » Sat Aug 12, 2017 1:52 pm

kandj wrote:
pdp497 wrote:Well I got my second opinion, pretty much same as the first. Not really sure where to go from here it just feels like with surgery off the table there is no real hope of ever reaching remission. They think the liver tumors are too spread out as well as lymph nodes in multiple regions making the possibility of clearing everything unlikely.


Did they do a PET or regular CT scan? What are they basing the lymph node involvement on? I know my husband was told there were some suspect aortic nodes but when they actually took them out the surgeon said they were squishy and he didn't think they were cancerous. Pathology confirmed they were benign.


Also, we heard EXACTLY the same thing from MDA about the liver involvement. We were told they were too numerous and spread out throughout the liver. I believe 9 were counted on scans, over 15 when they actually did surgery 8 months later at MSKCC (many were too small to see on scans but the doc saw them when operating on the liver).
wife to DH, Diagnosed at 36yo with stage 4 CRC August 2015 mom to 3 boys
numerous mets throughout liver, unresectable currently
Folfox +avastin aug 15-Nov 15
Lynch and MAP negative
Folfiri starting Jan 2016
Primary resection and HAI pump placed Dec 2015 at MSKCC, FUDR started Dec 2015
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 3 Liver mets and one possible lung met. Focusing on Liver mets for now. Back on FOLFOX to get them shrunk!


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