Folfiri stopped working

Usually you need to get a referral from your doctot to get in with a doctor at Mayo.  But you can just google Mayo and call any of the Mayo clinics in Rochester, Minnesota, there is also one Florida, and another in Arizona. They have the same trials available at all three clinics. I go to the Rochester clinic,  it just depends on which is closest or most convenient for you.    

The AXL trial was one that he talked to me about getting into.  There was another that targets KRAS mutation but he said it has been causing problems with vision and even possible detached retinas so advised strongly against that one.  He actually believes that I should go through with the Capox as it has the best chance of working for me, and believes I can go back on maitenence therapy.  

I actually don't remember the other two trials because he didn't think I should try them and didn't talk about them to me much at all. They are still phase 1 trials, and so he thought since I have other options I shouldn't go on something that is not proven to work.  And he said I can reconsider if they move on to phase 2.  

There are some more trials that will be coming up in the next few months and he wanted me to consider one that will use immunotherapy and probiotics.  I will definitely be looking for it.   

I love Mayo Clinic and have been treated very well by all the doctors and staff.  They literally have saved my life on 2 occasions - the first by placing stents into my gallbladder and the second by diagnosing the bleeding tumor in my colon that all other doctors said was just hemorhoids, and then scheduling and performing robotic surgery that allowed me an easier recovery.

Good luck to you!  I hope you find what you are looking for.  

I am glad you are still doing well on the Folfiri.  I've heard that some people are on it for 3-5 years, so was expecting to be on it for a couple more years.  I guess it just depends on the person.   

One doctor told me he wouldn't switch meds unless tumors grew significantly.  They have increased a few millimeters and now the radiologist mentions the size of six lung tumors from 9mm or 1cm to 1.5cm and the lymph node is now 31 x 32 mm (and "several more smaller ones"  whereas they used to only mention one or two by size even though they referred to others that were "subcemtnimeter".   The radiologists and doctors have all said there are no new tumors - thanks to the avastin!  

I had 8 rounds of folfox in 2016 and the neuropathy was shortlived.  I am fine now and the doctor said if I get neuropathy I can stop the oxaliplatin.   Pretty sure I can handle four rounds.  I can handle the suffering if it's for a higher purpose of knocking out this cancer again.  He gave me hope of going back on the  maintenence chemo of avastin and capacetabine and  that was  easy to tolerate.  

As for what the doctors recommend, many use a guide that was developed by my first oncologist at Mayo, Axel Grothey,  he is a world renowned colon cancer oncologist and is now at at research center in Tennesee.   His guide details which chemos to use for various strains of CRC depending on mutations, progression, and side effects.  My previous oncologist at home was going to go straight to the regoronifib and nivolumab instead of retrying the oxaliplatin, I believe he was placing hope in the immunotherapy as I do.   He moved to LA to be near family so I have a new doctor at home, and she also works at the emergency room at MD Anderson in Houston.  She flies to ND and works for 2 weeks and then flies back to TX and works 2 weeks.  She didn't have an answer for me though, and said she thought I should see what they have at Mayo, not sure why that is.  She never said anything about what MD Anderson has available so I'm pretty sure she doesnt work with the targeted therapy at all.  I was there in the spriing and the doctor I saw in the targeted therapy clinic had a different medicine sounded like "copansilib" for me to try but I would have to stay in Houston to get it and miss out on family life.  It was not trial.

My oncologist at Mayo in on the board for their clinical trials so has knowledge of what's there now and upcoming trials.  I have been very lucky to get good doctors, even if I have to travel sometimes to see them.  I would like to have the cryoablation or radiation on a couple lung tumors, but with that lymph node, the doctors say it wouldn't increase my survival and would cause me to lose "real estate in my lungs".     

I'm not sure what is best, but I know the side effects of oxaliplatin and don't know how the others will affect me.  While I have been trying to get onto an immunotherapy as the best hope for a cure, I would rather go with something I know that I can take at home and then go on to the regoranifib and nivolumab.  I wish they would allow me to take the nivo witht the oxaliplatin.

I only received 2 infusions of the oxaliplatin,  one on December 7, 2019 and the second on January 13, 2020.  I had  a severe asdverse reaction 15 minutes into the second round.  It started with a little cough, then felt like my lungs were filling with fluid as though i was drowning.  my lungs were in fact filling wiyh fluid.  I was hospitalizwd  on January 13th. and hospitalized again on February 4th at Mayo's St Mary's Hospital due to flu I'd in my lungs and irregular hear rythyms..

I had radiation a l mph node at Mayo mid-March to April, during the pandemic while everything was closed,and got home on Good Friday just before Easter. . 

Currently on Stirvarga, and am tolerating it reasonably well.  Just approved for Compassionate care use of Opdivo to be administered by my local doctor every two weeks, while taking Stirvarga 21 days on and 7 daya off.