No more options left, now moving on to investigational drug. Need advice....

Katijane1

Hello,

my name is Jane & I’m new to this forum.

My father was diagnosed with stage III colon cancer Oct 2013, had colon resection and 12 rounds of 1st line chemo, was cleared by his oncologist telling him he doesn’t need to come back ( Onc didn’t do any surveillance such as checking CEA or scans). On August 2015, colorectal surgeon who was to fix my dad’s left groin hernia, took the initiative to send tissue to pathology and that’s when we learned that my dad’s cancer had advanced to stage IV mets adenocarcinoma, primay colon. He had cancer spread to his peritoneum which HIPEC would have been a consideration but was told it was a rigorous procedure and mainly for those who are young.

My father in 2015 was a very active & young at heart 80 year old. I was pretty mad at the oncologist for not doing any surveillance but even angrier at myself for not having taken initiative to question this dr’s action in not doing surveillance. 

So we changed oncologists and i vowed to be with my dad for every single appointment, to read up on everything I can in regards to helping my dad fight this terrible disease and to question the docs and obtain second (and third) opinion when we found it appropriate. My dad has gone through all 1st line, 2nd line, 3rd line chemo drugs as well as going on Xeloda and Lonsurf which put him in the hospital for a week during the summer. We also found that my dad was a KRAS Wildtype and got him on Erbitux which helped decrease his tumors for a while, then it stopped working. We even went back to Folfiri + Avastin and that didn’t do much.

So now it’s January 2017, tumors are now not only in his peritonial cavity, but several in his liver now. He also has a PleurX tube in his lungs coming out from his side so I can drain the excess pleural fluid that is being produced, likely due to liver mets or side effects of Lonsurf. My dad has no more FDA approved options.

My dad, oncologist and I decided we should try clinical trials. We were told my dad needs to be off chemo for atf least 3-4 weeks. He’s now off chemo for 7 weeks. My dad and I have gone to CTRC, START and MD Anderson. i Wasn’t impressed with MDA which we had to travel hours to, the doc wanted to try Folfox and we were looking forward to a research drug that was in line with my dad’s tumors! He can get Folfox in our own town so it was easy to let go of MDA. So now, finally, both CTRC and START have investigational drugs my dad can be a part of. CTRC‘s drug is BLZ945 which acts agains a protein called human m-CSF. This protein helps cells including TAMS to grow. So the idea is for this drug to decrease the TAMS in the tumors to grow. START research drug is an antibody that’s designed to target and block a protein calledCD47 ( present in cancer cells). This antibody will also combine Erbitux which previously had worked on my dad. Very soon we will have to decide on one of the drugs to start my dad on. Of course it’s a shot in the dark for both, but wanted to know if anyone is familiar with either or has a similar situation as my dad. Any advice, any thoughts are welcome. We are grabbing at straws now .

Prayers to all patients and caregivers on this forum. 

 

-Jane

 

Mikenh

That's a rough story and

That's a rough story and sorry that you have to go through this but it sounds like you're well educated on what's out there.

One question I'd ask is if you know the Gene Mutation of the tumors as this knowledge might make some clinical trials available. My Gene Mutation is KRAS G12D and there's a clinical trial for an immunotherapy process for this mutation. I had generally assumed that Stage 4 patients get the Genomic Tumor testing but I'm not so sure of that. I am sure that any major cancer center like MDA can do this testing.

Katijane1

Mikenh said:

That's a rough story and

That's a rough story and sorry that you have to go through this but it sounds like you're well educated on what's out there.

One question I'd ask is if you know the Gene Mutation of the tumors as this knowledge might make some clinical trials available. My Gene Mutation is KRAS G12D and there's a clinical trial for an immunotherapy process for this mutation. I had generally assumed that Stage 4 patients get the Genomic Tumor testing but I'm not so sure of that. I am sure that any major cancer center like MDA can do this testing.

Thank you for your reply.

Thank you for your reply. Truth be told, I don’t feel well educated on what’s out there so I am reaching out. I believe my dad got the genomic mutation testing for BRAF, KRAS,NRAS,PUK3CA and PTEN. However CTRC resident we spoke with stated that the liver biopsy my dad got recently was testing for “30 other gene mutations”. I yet to hear the results as “they haven’t come back“. Do u know if there truly are other mutations that are being tested? 

I’m assuming when u say ur gene mutation is KRAS G12D, then you are not Wildtype. Is that correct?

 

Mikenh

Katijane1 said:

Thank you for your reply.

Thank you for your reply. Truth be told, I don’t feel well educated on what’s out there so I am reaching out. I believe my dad got the genomic mutation testing for BRAF, KRAS,NRAS,PUK3CA and PTEN. However CTRC resident we spoke with stated that the liver biopsy my dad got recently was testing for “30 other gene mutations”. I yet to hear the results as “they haven’t come back“. Do u know if there truly are other mutations that are being tested? 

I’m assuming when u say ur gene mutation is KRAS G12D, then you are not Wildtype. Is that correct?

 

Here's a diagram of cell

Here's a diagram of cell growth signalling. The gene mutations in the tumor are descriptive of where and how things went wrong. So the signallng mechanisms become the cancer source. KRAS Wild, I believe, means that he doesn't have a KRAS Gene Mutation. I am said to be KRAS Mutant and my mutation is G12D. I was tested for 141 known mutations and also tested for other abnormalities. They found KRAS G12D and two other differences that haven't been researched. This was done at Mass General Hospital and they did it all in One Shot. Modern NextGen sequencing can test all of the known mutations in one shot. I think that the approach of testing one thing, then the next, then the next is archaic when you can find out exactly what the problem is with NextGen.

You can see descriptions and diagrams of a system to do the Genomic Tumor Testing at http://world-cdx.com/wp-content/uploads/sites/65/2016/10/Day_2_1415_Stream_B_Borger-World-CDx-20Oct2016_Yes.pdf

It's a few years old but it should give you a general idea of the Pathology pipeline.

Mikenh

Katijane1 said:

Thank you for your reply.

Thank you for your reply. Truth be told, I don’t feel well educated on what’s out there so I am reaching out. I believe my dad got the genomic mutation testing for BRAF, KRAS,NRAS,PUK3CA and PTEN. However CTRC resident we spoke with stated that the liver biopsy my dad got recently was testing for “30 other gene mutations”. I yet to hear the results as “they haven’t come back“. Do u know if there truly are other mutations that are being tested? 

I’m assuming when u say ur gene mutation is KRAS G12D, then you are not Wildtype. Is that correct?

 

Here's MGH's page on KRAS I

Here's MGH's page on KRAS I think. You can see the Genes and Gene Mutations on the sidebar.

https://targetedcancercare.massgeneral.org/My-Trial-Guide/Genes/KRAS/G12D-(c-35G-A).aspx

The MyCancerGenome version:

https://www.mycancergenome.org/content/disease/colorectal-cancer/kras/34/

 

 

Katijane1

Mikenh said:

Here's MGH's page on KRAS I

Here's MGH's page on KRAS I think. You can see the Genes and Gene Mutations on the sidebar.

https://targetedcancercare.massgeneral.org/My-Trial-Guide/Genes/KRAS/G12D-(c-35G-A).aspx

The MyCancerGenome version:

https://www.mycancergenome.org/content/disease/colorectal-cancer/kras/34/

 

 

Wow! Got both your replies,

Wow! Got both your replies, thank you! I’ll be looking up those sites further before my dad‘s appt w/ one of the research oncology docs tomorrow, so I can pick his brain with better understanding!

I hope things are going well with your treatment, are they?

Katijane1

Mikenh said:

Here's a diagram of cell

Here's a diagram of cell growth signalling. The gene mutations in the tumor are descriptive of where and how things went wrong. So the signallng mechanisms become the cancer source. KRAS Wild, I believe, means that he doesn't have a KRAS Gene Mutation. I am said to be KRAS Mutant and my mutation is G12D. I was tested for 141 known mutations and also tested for other abnormalities. They found KRAS G12D and two other differences that haven't been researched. This was done at Mass General Hospital and they did it all in One Shot. Modern NextGen sequencing can test all of the known mutations in one shot. I think that the approach of testing one thing, then the next, then the next is archaic when you can find out exactly what the problem is with NextGen.

You can see descriptions and diagrams of a system to do the Genomic Tumor Testing at http://world-cdx.com/wp-content/uploads/sites/65/2016/10/Day_2_1415_Stream_B_Borger-World-CDx-20Oct2016_Yes.pdf

It's a few years old but it should give you a general idea of the Pathology pipeline.

I too find it ridiculous that

I too find it ridiculous that pts are not being tested for all the different mutations in one sitting! I was never told there are141 known mutations! Thank u for the education.

Mikenh

Katijane1 said:

Wow! Got both your replies,

Wow! Got both your replies, thank you! I’ll be looking up those sites further before my dad‘s appt w/ one of the research oncology docs tomorrow, so I can pick his brain with better understanding!

I hope things are going well with your treatment, are they?

I wouldn't recommend going

I wouldn't recommend going though all of them as it's a big number and you only really care about the mutation(s) that your father has.

I am back to a semblance of normal as I can eat again and don't feel like throwing up all the time. The Oxaliplatin is a real bear for me, and, it seems, most others.