Just Found Out Lonsurf Stopped Working and Cancer Growing

Ruthmomto4 said:

I am sorry

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

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   

PamRav said:

Lonsurf

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

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.

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).