Back again

NewHere said:

Sorry

D--n sorry to hear it is back.  

On FOLXFOX - I had neuropathy after 8 rounds of FOLFOX (my 1st session of FOLFOX was without Ox, then 8 with it, then 3 without due to neuropathy)

I then went on FOLFORI about 3 years later when I had it come back third time (second time  had part of my lung removed.)  I had 24 rounds where it kept things in check.  When FOLFORI and Avastin combo stopped working,  I moved onto LONSURF (was going to try FOLXFOX again, but doctor's thought this was better move for a few reasons).  LONSURF actually shrunk things for a bit.  On it a year now and overall stable still, though there are indications it may be getting close to going onto next things.

I am MSS and KRAS mutation, so have some  drugs off the table, though you never know.  When I was diagnosed, LONSURF was not approved, it was approved about 10 months later.  So you never know what may come up.  I have a trial I can jump into based on my blood work.  Definately search for them.  The one I got into about 25% of CRC patients can get into based on certain markers.  

Definately check into your blood work and markers.  I am at Memorial Sloan Kettering who ran IMPACT tests (about 450 markers/genes), Yale (where I will go for trial), also ran some tests and picked up some things which could lead to possible treatments/trials.  MSK actually recommened for me to contact Yale, Dana, etc last year when they did not have any trials that would fit me and would review any and all things with me.  

So it is really worthwhile to dig a bit into these things.  As I tell people, I am playing kick-the-can myself moving onto the next thing.

Onc has scheduled FOLFIRI w/ Avastin already which starts in a couple of weeks. I will probably refuse the 5-FU. I made it to 9 rounds of FOLFOX then I dropped the OX for the same reasons as you. I still have some numbness in my toes but it is tolerable, I can run with it just fine. Like others I've read, the FOLFOX triggered diabetes type 2 so I have been on metformin, but exercise really dropped the blood glucose levels, I'm concerned about not being able to keep up that level of activity.

No further info on the blood work I had done, I sent the doctor who requested the testing a message but have yet to hear from him. There appears to be several immunotherapy trials for MSS patients out there.

Thanks for the advice.

Tueffel said:

Avastin

I've been wondering my the doctor is giving you Avastin? I asked my teachers about it and also did researched and KRAS with avastin is not recommended...

It's part of their standard 2nd line care, FOLFIRI plus Avastin. I talked to the onc today about a few things and discussed KRAS, she said that recent studies have shown kRAS doesn't interfere with the avastin, similar outcomes for wild type and the mutation. She also said that kRAS was not a real "bad actor in this," meaning I shouldn't be too concerned, just that there are no immunotherapy options with it.That could be bedside manners at work, but online search bears out what she's saying.

There is a trial out there with an additive to FOLFOX/FOLFIRI that has shown some promise for kRAS but we will see if I'm eligible. It would be good because it would be the same as what I'm going to get plus more.

SnapDragon2 said:

I am not brave enough to go

I am not brave enough to go back to the gym just yet.  Scared of a hernia really is what is stopping me.  I need to just suck in a breath and go,

Just do it! If my son didn't have a soccer game I'd have gone yesterday because it usually makes me feel better.

Tueffel said:

I would ask

I would ask why you dont have that option. I dont know if it a hard procedure but it is like putting stents into the coronary vessels of a heart. They puncture the femoral artery around your hip joint, you only have local anesthesia and then they go with a wire to the arteries supplying the tumor, put chemo in there and close the arteries. The cancer is then in chemo and gets no nutriebts from blood supply. The next day they check how and if it worked. But it can be that your tumors are simply not big enough for it. 

Yes I believe the treatment is different when you had 2 procedures on the liver. My dad 2 surgeries on the liver and I assume that even with a less number of mets confined to one segment, they would be careful with another surgery. 

I hope that the treatment they decided on will help you!

Tueffel

Yeah, that was what I was thinking, they can't really direct the chemo to one big tumor or a couple of them. But I'll ask about the option. Had a discussion on here about the HAI pump and the person was shocked that this hospital is not doing them. Then again, there aren't that many AFAIK.

beaumontdave said:

That is a hard one, to take

That is a hard one, to take after dealing with as much as you have RTH. In my case,  having the three spread tumors in my liver ''scooped out, then watching that CEA slowly rise again, over 2 years was very unnerving when I had to focus on it. I was pretty good at staying in the moment by then, you seem to be on an even keel, in your comments, so that certainly helps. The CEA had gotten to 47 by the time they went in to get the one mass that popped up in the second surgery. I believe it was close to 3cm, the three before it ran from 2.2cm-3.2cm, in multiple segments.  The last lesion was also up in the 8th segment, a harder spot to reach, near my diaphram. They got it all and maybe a bit of the diaphram, because my right lung had a lot of fluid that stayed high for months until they needle-aspirated my lung twice a month apart, 2 liters the first time, one liter the second. The concern about the fluid meant that I got CT scans automatically followed by PET scans for the next 4 three month intervals. The big concern they expressed was that this fluid could indicate cancer had made its way into the lung, so it was a long year wondering at intervals, what was coming. By Sept. 2015, a year later, they announced one more CT in 6 months, and if I got passed that, they'd go to blood panels at 6 month intervals, which is where I'm at, to the present. I mention all this for what its worth to your situation. Having it remain in the liver is a big thing, and hopefully they have a good plan to get after it there. Hang tough...........................................................Dave

I'm putting on a good face online but I have my days. Many other things require my attention so the only freak out time I have is when driving, lol. Odd thing with me, or seems odd to me, is that every indicator for malfunction of the liver is well within normal, only time it was out of bounds was right after the open resection. Nothing is wrong, the FOLFOX induced problems like elevated glucose and blood pressure are normal now. Their big plan seems to be systemic chemo and then see what happens. Don't know how happy I am with that but we're running out of options.