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Just Found Out Lonsurf Stopped Working and Cancer Growing

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

And to think I was bummed about the Knicks getting knocked out early or the Yankees playing horribly.  Laughing

Time to move on to a trial.  I know the next move if the trial does not work, but want to get ready for the next move when/if the move after the trial move.  Yup.  I plan ahead.

My doctors still have no idea how I can be breathing as well as I do.  Well actually they do, my crazy exercising.  LOL.

Keep moving people.  It helps.

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

I am bumped to read these news. I dont know why but since April I feel only bad news are coming in here... at least Lonsurf worked for some time for you and I am sad that this effect is gone now. But you are fighter so I hope the trial will be good for you. My fingers are crossed.

Tueffel

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

So that is good.  I just got keep on hanging on until the next thing.

worriedson714's picture
worriedson714
Posts: 327
Joined: Dec 2019

That seems to be here so much lately and this is yet more so sorry to hear this will be praying that you find a trail and it works and gives good results. 

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

I am going to keep on pushing.  I still have some left in the tank to try.

Trubrit's picture
Trubrit
Posts: 5512
Joined: Jan 2013

That's not good news. 

Keep up the crazy excerise. Keep on living.  It has to get wearing, so many treatments. I'm glad that you have, and are able to pursue your exercise routines.

Run with the Wind, New. We will run beside you. 

Tru

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

Really not what I wanted LOL.  

It is 50 rounds of chemo (almost, this one is cut short to make sure I am not on anything in case a trial requires no treatment for 30 days prior).  

I will get my butt on the bike trainer tomorrow and keep on going.  Then run tomorrow or Friday.  Weather has been awful for outdoor things the last week.  Prefer outdoors when I can for running.

abita's picture
abita
Posts: 1072
Joined: Dec 2017

So sorry to hear this. What is the next move if not a trial?

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

I did qualify for a trial last year.  But was staying on Lonsurf as long as it worked.  Contacted the trial to let them know it was time.  I should be good to get in.  They basically said I had a spot whenever I wanted when chemo ran it course (assuming trial was still going, which it is.)  My primary oncologist is looking to see what has opened at MSK.  It has been a year and a half since we looked for trials since I had the one.

If the trial I am about to go in does not work (or is closed), I may try some HER-2 treatments and/or trials.  The mutation is common for breast cancer, but there are indications the treatments may work on colon cancer with the mutation. It seems about 4-5% have it.  I got lucky on that one.  So I am already going to start looking for after the trial and after HER-2 for the move.  Will look more in the next week or so.  Running through things to see immediate moves.  Hopefully it is trial.  May need radiation on one lung met.  Unsure.

abita's picture
abita
Posts: 1072
Joined: Dec 2017

It was absolutely the smart thing to do to stay on a drug while it was working!

Glad you have a trial lined up, and what sounds like a viable backup if not. 

beaumontdave's picture
beaumontdave
Posts: 1170
Joined: Aug 2013

Sorry New, hope you find a good trial starting up. Immunotherapy sounds so promising, things just need to get happening now. Keep going hard and figure it out...................................................Dave

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

When I was diagnosed, Lonsurf was not approved for colon cancer.  It has kept me going the last 16 months.  Immunotherapy has made leaps and bounds.  I am going to do my best to stay phsyically as strong as possible.  My exercise has kept me in a lot better shape than I should be based on what is happening on the inside.  It is catching up a bit, but I did a 6 hour 8 minute  bike ride followed by 37 minute run two weeks ago.  Slow.  But 6:45 minutes straight through.

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

Man, just terrible.  You are on it with looking for something else.  That's good.

Let us know what you find!  keep on Running....

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

I need to find that box of chocolates soon.  LOL.  I am going to get on bike tomorrow.  Today kind of stunk.  So took a day off.  And had a drink.  And ice cream.  LOL

Canadian Sandy's picture
Canadian Sandy
Posts: 721
Joined: Jul 2016

Sorry to hear this, New. You are in my thoughts. Thanks again for helping so many of us here. Keep running!

Real Tar Heel
Posts: 255
Joined: Nov 2019

The Knicks getting kicked to the curb was pretty bad but this news is far worse. They are doing one of the merck mRNA trials down here I think you would qualify, it's kRAS mutation, one with the experiemental drug and experimental drug plus Avastin I think.

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

RTH, never thought it could happen.  But I think I agree, this in all likelihood is worse ;)

Which trial is the mRNA one?  I contacted the trial I qualified for yesterday (they had a spot for me) and have not yet heard back. I am probably a bit more sensitive on the timing then they are.  LOL.  

This is the one:

https://clinicaltrials.gov/ct2/show/NCT04166435

Real Tar Heel
Posts: 255
Joined: Nov 2019

It's this one

https://clinicaltrials.gov/ct2/show/NCT03948763

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

It looks like there is a place close to me conducting that study.  Will ask about it if the one I am supposed to get into is closed or the doctor recommends switching (same place and doctors it looks like, though different lead doctors.)

Ruthmomto4's picture
Ruthmomto4
Posts: 706
Joined: May 2013

I hope you are able to find a trial that helps, you are so incredibly strong! 

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

Still working through this all.  I kind of knew at some point it could happen.  And having the scan pushed up (plus conversation with doctor a couple months ago) looked like this point was close.  But still a bummer as options narrow a bit.  I am going to keep exercising and keep on going as I play kick the can until the can fix me :)  

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

Im sorry for this turn of events but like you mentioned, maybe you did get lucky with the mutation. Im hoping hard that means you will respond well to the trial :). 

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

It looked good last year and I think they mentioned there was some positive responses, but it was all still early the last time I spoke with them.  Cannot wait until I can speak to them about it.

PamRav's picture
PamRav
Posts: 323
Joined: Jan 2017

You did have a good run with this drug.  You're the first person I've heard had such good results.  I may be headed down that road soon, how were the side effects?   
im glad you have an actionable mutation.  I wish you great success in the trial.

Keep running, you are such an inspiration. 
p

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

I had 12 rounds of FOLFOX (8 was with OX part) and 24 Rounds of FOLFORI (22 with Avastin) with about 5 months off FOLFORI before starting Lonsurf, so there was some build-up of tired I am guessing over time.  And tired was probably the biggest part for me of Lonsurf.

Taking pills is a lot easier than dealing with the infusions and then having to be plugged in.   On FOLFOX I had every possible side effect once during treatment, all minor, execpt for neuropathy &  cold sensitivity.  I would be queasy during the week of infusion and pump, but never even vomited.  Occasional anti-nausea medication.  Ginger snaps.  I did have hiccups maybe 1/2 dozen times. It caused an abcess in a tooth.  But overall not horrific.

FOLFORI same thing, though it made me have zombie-like periods of time.  That weird altered feeling of being awake and asleep, but not really either of them.  Would also have "flash-back" more, sometimes 9 or 10 days after being unplugged.  Indgestion also during the week on infusion.  Plus messed up sleep patterns - had it on FOLFOX but more on FOLFORI. The sickest I ever was was following my first round of FOLFORI.  Three crazy bouts of vomiting 9, 12 and 20 days (or so) following the infusion.  The second was so bad I told my wife that if this is what it was going to be like, I was done with treatment.  They had to dial it down - after that nothing other than described.

That is just to give a sense of how I dealt with those two.  

Lonsurf continued to make me tired - more so the second week of the cycle (5 days on, weekend off, 5 days on, 16 days off).  It messed with my sleep even more.  More nausea, but nothing that some coke or giner ale would often settle out.  Maybe took anti nausea pills 2-3 days out of any 5 days on if I was having a REAL bad week.  Never vomited.  I found it gave me more chemo brain and mood swings than the other chemos.  I could be watching some of my favorite comedies and would all of a sudden feel like crying.  So strange.  Also by the second week probably more cranky/snappy and tired.  I would know it was happening, and I would think about getting through the cycle and knowing it would be okay after the pills were done because I figured out the pattern, but even then I would question it and whether it would stop.  The hardest part during this was when the pain in my back started and impacted exercising.  Exericising less due to the pain, especially when on the up and downs during the pills, made things mentally difficult.  Not sure if that fully makes sense.  I am also not sure how much of that was solely from Lonsurf or all the chemo building up.  Almost 50 full rounds.  

The doctor's did say I did very well with Lonsurf in terms of response and the side effects - it was really more the head games mentioned.  And even with that, I hope everyone who has Lonsurf has the results I had and the basically tolerable/managable side effects.  None of the chemo is fun, but if there was anyway Lonsurf was working for me I would gladly jump back into and take the pills forever.  Even more so because my back pain seemed to come down finally and the treatments were easier because of that.

  

PamRav's picture
PamRav
Posts: 323
Joined: Jan 2017

Thank you so much of your thorough review of Lonsurf. Your info is a great help to me.

I've done FOLFOXFIRI at the very begining before my surgery,   FOLFIRI with Avastin after surgery.  Made it for one year NED.  Then back to the FOLFIRI with Avastin for 6 months. Next did xeloda  with Avastin as a maintenance for about 4 months, had to stop due to hand and foot.  Was able to stay off chemo another year due to a course in radiation to the lung lesions, and to covid because i put off my scan.  I finished another 6 months of FOLFOX with Avastin Dec of 2020 And I have the bad neuropathy to,prove it   Now ive got a couple of things growing on my liver.  My mets have been in both liver and lung which precluded surgical intervention. Very long story short I am going to need some sort of chemo in the near future 

i can totally relate to your experience with FOLOFIRI and the sleep issues.  The nightmares, ugh. So awful. 

Again thank you so much for he information. 
all the best to you

Pam 

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

Glad I was able to help a bit with it.  Figured the overview of all of them could maybe help give a point of perspective having gone through the things yourself.  

All my thoughts are with you and that if you have to go to Lonsurf, it works well for you like it did for me - be for even longer :)   (I have dozens of tumors in my lungs, including one that is 6.5 cm x 6.5 and many 2cm, so I am inoperable myself.  Also 5 or so in spine and in many lymph nodes, all of which are also inoperable).

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

I just popped on when I heard about Phillie G.  I'm really sad that you're meds aren't working.  Your sense of humor is working just great.  Keep on exercising!  Eating right and exercise are everthing with cancer.  I gave up red meat, bbq, wine and so many other things, you're so right that that's how we do things.  Now....BREATHE...okay again....BREATHE.  I'm glad you plan ahead, looking forward to reading your success!

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