The Colon Club

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.

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.

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.

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?

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.

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.

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.

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

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

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.

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

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.

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

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.

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).