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3 trips to MD Anderson, and still not on clinical trial

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I've traveled to MD Anderson in Houston, Texas from North Dakota 3 times since December 2017 trying to get on an immunotherapy trial that would hopefully lead to remission or possibly cure  my stage 4 colon cancer.  I have KRAS mutant, and MSS (stable).  In April 2018 I was placed on the waitlist for a trial using MEK inhibitor and Opdivo that was supposed to begin in May 2018.   Apparently there's been problems getting the trial up and running.   

I was diagnosed in February 2016, and on Folfox for 8 rounds then went on maintainence chemo of Xeloda and Avastin until August 2017.  I had microwave ablation in the left lobe of my liver in January 2017 and had Y90 theraspheres in the right lobe of my liver in April 2017.   

I've been off chemo since August 2017 after a gallbladder attack put me in the hospital for several days on IV antibiotics and have since had a number of surgical procedures: 

September 2017 I had an external tube placed in my gallbladder for 10 weeks. Also had a previously scheduled cryoablation for a lung tumor, then collapsed lung and hospitalized with tube in lung for 3 days. 

October I had an abcess tooth so needed to have a root canal and filling, also had antibiotics for 2 weeks. 

In November, a failed surgery attempting to remove my gallbladder.  

As a result I've only had one round of chemo since last fall, in January 2018 which caused me to be hospitalized due to inflamed gallbladder and suspected colitis.  I was in the hospital for 5 days on IV antibiotics which combined with the other meds caused bloody stools to develop. 

March 2018 I was referred to Mayo Clinic in Rochester, where I had 2 procedures to place stents in my cystic duct so it could drain and stents placed in bile duct, then a colonoscopy to see why I was bleeding. Found a colon tumor was causing blockage and bleeding. 

In April, I had robotic surgery at Mayo to remove the colon tumor; also had a cyst in my liver drained and luckily was able to avoid an external tube.        

My latest CT scan done June 5, 2018 at MD Anderson showed growth in lung tumors that were 4mm to 6mm in November 2017 and are now 1cm to 1.5cm, also growth in hilar (lymph) nodes and now possible cancer in mammary node.  Sounds really scary.  The April 2018 scan didn't sound as bad but now I'm getting worried about surviving.    

So I am starting back on chemo this week - a reduced dose of Folfiri.  Hopefully I'll be able to tolerate it this time.  

Not sure if this clinical trial will work for me (or if it will even start).  If not, I am praying that something better will be developed.

I'd love to hear from anyone who has been part of a clinical trial to learn more about the process of actually getting into them and what type of help may be available for travel and hotel costs.

Thanks for reading, and for any information you can share!

Joan  

Butt's picture
Butt
Posts: 355
Joined: May 2018

I saw MD Anderson doc about 2 weeks ago. I was told there are no current trials in an immunotherapy department for MSS colon cancer.

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

Apparently that's true.  The doctor I saw was Benny Johnson.  He said Rosche did a similar study that didn't work out like they thought it would.  

Axel Grothey is doing an immunotherapy clinical trial at Mayo Clinic for MSS colon cancer.  I can't be in that one because the control group is on Avastin and Xeloda, and that combination stopped being effective for me, according to my oncologist at home. If that combo works for you, you may still be able to get into it. 

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

Apparently that's true.  The doctor I saw was Benny Johnson.  He said Rosche did a similar study that didn't work out like they thought it would.  

Axel Grothey is doing an immunotherapy clinical trial at Mayo Clinic for MSS colon cancer.  I can't be in that one because the control group is on Avastin and Xeloda, and that combination stopped being effective for me, according to my oncologist at home. If that combo works for you, you may still be able to get into it. 

Annabelle41415's picture
Annabelle41415
Posts: 6550
Joined: Feb 2009

I'm not able to share any additional information but wanted to let you know that I'm wishing you well in your treatment going forward.

Kim

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I truly appeciate your good wishes!  I love the positive energy on this site as much as all the great information the members share about treatments and how to manage side effects. It's been so helpful to me. 

Ruthmomto4's picture
Ruthmomto4
Posts: 663
Joined: May 2013

I also have no helpful information, I just want to tell you I hope they are able to help you soon. I think you have been through more than enough.

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