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Folfiri stopped working

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

I've been on Folfiri since June 2018 and have had increases in my CEA.  Just found out the tumors in my lungs are growing again.  The doctor at my local clinic said that the average time on Folfiri before cancer progresses is only about 3 months so she thinks I did really well on it.  However I believe that there were too many delayed treatments for the 5fu bollus which caused the irinotecan to be delayed as well.  I hated the crap anyway and was praying for a change to something more tolerable. Like that could happen.  usually you move on to stronger meds.    

I went to Mayo to see what the best options are and they had several choices for me.  The one most recommended by my oncologist at Mayo is to go on Oxaliplatin and Capacetebine.  He says it the response rate is well over 50% for that and even higher for many patients up to 80%.  He wants me to have four treatments and go onto maintenence chemo of Avastin and Capocetabine again.   

He was also very reasuring and tole me that people can live for years with colon cancer tumors that are confined to the lungs. The goal is to shrink them and keep them from spreading anywhere else.    

When CAPOX stops working he wants me to try Regoronifib and Nivolumab combo.  He said there is a 30% response rate for MSS patients with that combo.  

There were several options for trials and he had tme talk to one of the researchers about a trial that targets the AXL gene.  I decided to try the CAPOX as it seems to have the most effective choice and the AXL targeted therapy is a trial and not certain to work.  He talked about some upcoming trials that he feels will be really good for me and said I can change to one of them if I decide the oxaliplatin is too difficult to tolerate.

I am optimistic about living at least a few more years and praying they will find that "magic bullet" that will cure colon cancer as they have found cures for so many other cancers.  

 

God bless and good luck to all!

 

Joan 

Butt's picture
Butt
Posts: 354
Joined: May 2018

What other trails he was talking about? Do we have their numbers?

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

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.  

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

I was told FOLFORI usually works about a year as a general rule.  My last scan showed that everything finally stopped growing and showed signs of being knocked out (after about 20 treatments, some with Avastin) though two that were looking to be knocked out filled back in and doubled in size. I am running with the same treatment for now until the next scan to see what is up.  The things you listed look like the things I was told would be the next things up, though I am guessing the Oxi is off the table for me.  Had FOLFOX but only 8 with the Oxi due to neuropathy.

I am looking into trials - MSS and KRAS Mutation also - and will let you know if I come across anything. 

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

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.

 

 

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

I amay have mentioned this before, but figure just in case since it is difficult to keep track of who has what sometimes and it applies to our discussion (I am in a very similar boat). I have mets everywhere.  Throughout lymph nodes, in spine and over 60-70 in my lungs (with part of lung removed in 2016)  I have been lucky though being at Memorial Sloan Kettering with great doctors.  They just got to get faster to getting me a cure :)  I was in immunotherapy trial for awhile, did not work.  For me the lungs are the big issue as of now due to the extent of the tumors.  The lymph nodes have been very well behaved and stable for the most part.  

I am still hoping the two lung tumors stablize and I can continue to keep on going on FOLFORI for awhile.  How weird this cancer thing is - hoping to keep on getting a nasty chemo sounds like a good thing :)

Butt's picture
Butt
Posts: 354
Joined: May 2018

I went to MSK several weeks ago. They told me they don t have anything for me and it is chemo for life. They said go to MD Anderson because they have more trails. Went there 3 times so far and the same chemo for life. 

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

There is always hope that they will find a cure or at least something that is more tolerable than the current chemo meds.  It's good you have access to the best cancer centers.  Frustrating to spend money traveling and time away from friends and family to end up with answers you already had.  I have received excellent care at Mayo for surgeries and stent procedures that were not available at my home clinic.  

Pretty sure I won't be going to Houston unless there is an actual cure available that I can't get anywhere else.  It's too far away from my husband and kids to travel there for a trial.  I had such high hopes when I first went there and although it is very impressive facility, I didn't get any new answers.  I almost got on a T-cell therapy but didn't have the right markers they were looking for.  that was very exciting because people are being cured with that treatment.  

avargov
Posts: 24
Joined: Feb 2018

After a little over 2 years, my FOLFIRI w. Avastin stopped working.  Just started taking oral Longsurf this morning.  We will see how it works.  I am a bit worried, and so is my Onc.  But almost 4 years in, I can't be too worried.  So far, so good I reckon with only a few hiccups.  Hang in there, things may just be OK.

Capox Dude's picture
Capox Dude
Posts: 77
Joined: May 2019

was my flavor chemo, and it was very doable.  The ox is certainly annoying, but it makes sense to me to go with what works for a lot of folks - and your decision sounds very logical. Good luck.  Just make sure you have lomotil on hand if you get digestive woes from the pills.   Once I learned to jump on it when it started, it was far easier to control.   

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

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.    

abita's picture
abita
Posts: 815
Joined: Dec 2017

Keytruda was just approved for colon cancer, in case it works out better for you than Opdivo. Sorry to hear about your reaction. I thought my being taken by rapid response team to the emergency dept was bad, but at least I got to go home after 6 hours, and had no permanent damage. 

PamRav's picture
PamRav
Posts: 281
Joined: Jan 2017

Good to hear from you    Your oxaliplatin experience was terrifying   Glad you made it trhough   Ive had another reoccurence and strated FOLOX plus avastin    First dose was yesterday   I eill be very watchful at the nect dose, thanks for the informa   
i have been offered stirvarga but decided no at this time   Have you been on it long enough to see if its working?  Are the side effects tolerable 

i wish you well as you go thruogh your treatments  

p

 

 

 

abita's picture
abita
Posts: 815
Joined: Dec 2017

I am so sorry you had a recurrence. I know when I had mine it was emotionally devasting.

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

What a horrifying experience.  I am so glad you survived, thuogh it must have been so scary. 

It is good to hear from you though, and hope that all your new meds work as they should, and you can kick this. 

Keep us posted. 

Tru

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