Back again

Real Tar Heel

Update, had another major recurrence in the liver, five tumors this time, mostly small but one large one. Highest recorded CEA of 13. No idea regarding treatment recommendations at this point as the team hasn't conferred with each other. Will probably hear tonight. I would imagine chemo is back on the table but I've shown I'm not super toleratant of Oxy so that may eliminate FOLFOX, and given the minimal success with it it was probably off the table. These are growing fast when they grow. No signs after last scan in January, which was the same as last year.

If ablative surgery is possible, have a question for you lot, there are a couple of tumors that appear across two segments I would think that would be a problem for surgery, no?

On the bright side, it's only ever reappeared in the liver, so I'm not dead yet. My liver function is always top bins, I guess the tumors are too small to impact performance?

I had some analysis done on my blood last year regarding eligibility for immunotherapy but had not heard back from them. I always had well defined MSS tumors before. I will check the trials of course.

Particularly worried about my youngest, hard to read how she is coping.

Gonna be a fun summer!

 

NewHere

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.

SnapDragon2

Do you take things like

Do you take things like niacin, reishi, milk thistle, ect for liver health?  It might be worthwhile to investigate the benefit along with chemo.

 

kRAS is a monster for sure.  Found out today about cocoa via brand cocoa polyphenols inhibit kRAS also.  The paper was tested in pancreatic cancer but could be a benefit for colorectal.

Real Tar Heel

SnapDragon2 said:

Do you take things like

Do you take things like niacin, reishi, milk thistle, ect for liver health?  It might be worthwhile to investigate the benefit along with chemo.

 

kRAS is a monster for sure.  Found out today about cocoa via brand cocoa polyphenols inhibit kRAS also.  The paper was tested in pancreatic cancer but could be a benefit for colorectal.

I do take a B complex but not

I do take a B complex but not niacin alone, so I don't get a massive dose. I believed I was being very gentle with my liver but I don't seem to be having any effect, I'm pretty active, workout regularly, eat well.

Real Tar Heel

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/

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.

SnapDragon2

Real Tar Heel said:

I do take a B complex but not

I do take a B complex but not niacin alone, so I don't get a massive dose. I believed I was being very gentle with my liver but I don't seem to be having any effect, I'm pretty active, workout regularly, eat well.

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,

flutemon

bilobar

When I was first diagnosed with liver mets, it was bi-lobar.  I did have resection surgery where 3 mets were removed - both lobes.  2 others were deeper and they wanted to keep from cutting too much healthy liver, so I had SBRT for those.  2nd time around, I had 1 resected and 3 ablated.  They keep coming back, though, so now doc is trying to find something to control.  Folfox and folfiri really didn't do much and I didn't really get side effects from them.  I did cetuximab and 2 immunotherapies as an mss trial and had stability for 6 months (I think it was just the cetuximab working.)  I'm now on Lonsurf - 3 cycles - with stable disease so far.  I'd like more focus on removing current liver mets, but we're working on letting my liver recover from the beating it has had in the last 9 months.  It's looking better so I'm hoping for a surgical or sbrt option this summer.

Also, I've had a Guardant 360 test that identified me as HER2 amplified so I've tried targeting that.  It's a good test to find mutations that can be targeted.

Real Tar Heel

flutemon said:

bilobar

When I was first diagnosed with liver mets, it was bi-lobar.  I did have resection surgery where 3 mets were removed - both lobes.  2 others were deeper and they wanted to keep from cutting too much healthy liver, so I had SBRT for those.  2nd time around, I had 1 resected and 3 ablated.  They keep coming back, though, so now doc is trying to find something to control.  Folfox and folfiri really didn't do much and I didn't really get side effects from them.  I did cetuximab and 2 immunotherapies as an mss trial and had stability for 6 months (I think it was just the cetuximab working.)  I'm now on Lonsurf - 3 cycles - with stable disease so far.  I'd like more focus on removing current liver mets, but we're working on letting my liver recover from the beating it has had in the last 9 months.  It's looking better so I'm hoping for a surgical or sbrt option this summer.

Also, I've had a Guardant 360 test that identified me as HER2 amplified so I've tried targeting that.  It's a good test to find mutations that can be targeted.

I heard back from the docs

I heard back from the docs today, KRAS mutation and pi3 mutation. They said the tumors were too scattered in the liver for me to be a surgical candidate this time around, but didn't say why they weren't considering ablation. I am guessing that it may be that it would be an unecessary game of "whack-a-mole." But I'm seeing trials for KRAS but they haven't mentioned them as an option.

Tueffel

The same

My dad kind of got the same news as you got. Fast growing multiple tumors (5-6) in both lobes of liver. KRAS and MSS, his CEA is 30 but his liver is suffering a bit. The doctors will try transarterial chemoembolization in short TACE. So for now just regional approach or they only treat the liver and want to withhold FOLFIRI until lymphnodes or lungs are involved. Maybe this regional approach is also something for you? Just based on the information you might have it as an additional option. 

But dont give up! I am sure there is something around the corner.

Tueffel

Tueffel

Real Tar Heel said:

Onc has scheduled FOLFIRI w/

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.

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...

Real Tar Heel

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

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.

Real Tar Heel

Tueffel said:

The same

My dad kind of got the same news as you got. Fast growing multiple tumors (5-6) in both lobes of liver. KRAS and MSS, his CEA is 30 but his liver is suffering a bit. The doctors will try transarterial chemoembolization in short TACE. So for now just regional approach or they only treat the liver and want to withhold FOLFIRI until lymphnodes or lungs are involved. Maybe this regional approach is also something for you? Just based on the information you might have it as an additional option. 

But dont give up! I am sure there is something around the corner.

Tueffel

They've never mentioned TACE

They've never mentioned TACE and I suspect it was because initially I only had one small met that they were able to handle less invasively. Now that I've had two procedures maybe I'm not a good candidate.

I mistyped earlier up there I need to edit that post. The tumors are all in one lobe, but two are crossing segments, which could mean that they are on top of a blood vessel. I asked about that but that's probably a question for the surgical onc.

Thanks for the encouragement.

Real Tar Heel

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

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

Real Tar Heel said:

They've never mentioned TACE

They've never mentioned TACE and I suspect it was because initially I only had one small met that they were able to handle less invasively. Now that I've had two procedures maybe I'm not a good candidate.

I mistyped earlier up there I need to edit that post. The tumors are all in one lobe, but two are crossing segments, which could mean that they are on top of a blood vessel. I asked about that but that's probably a question for the surgical onc.

Thanks for the encouragement.

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

Tueffel

Real Tar Heel said:

It's part of their standard

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.

Learning new things

Then I assume that my teachers dont know this and I should not write in my exam next week. Thank you! That is interesting! Everything I find to KRAS is always bad, that drug does not help, resistance, low survival. When I google my dads mutation it is even worse, unfortunately most of it came true for now... 

Which KRAS mutation do you have specifically? 

I do read about a case study on a chinese patients with met colon cancer and my dads kras mutation. I dont know if that patient was also MSS but he was put on Lonsurf (actually they wrote the drug names, not the brand name, that was confusing) and he was in remission for 26 months now. I dont remember all details like if tgey operated the mets or not but I think they jumped directly to lonsurf. 

I hope you get into trial! 

Real Tar Heel

Tueffel said:

Learning new things

Then I assume that my teachers dont know this and I should not write in my exam next week. Thank you! That is interesting! Everything I find to KRAS is always bad, that drug does not help, resistance, low survival. When I google my dads mutation it is even worse, unfortunately most of it came true for now... 

Which KRAS mutation do you have specifically? 

I do read about a case study on a chinese patients with met colon cancer and my dads kras mutation. I dont know if that patient was also MSS but he was put on Lonsurf (actually they wrote the drug names, not the brand name, that was confusing) and he was in remission for 26 months now. I dont remember all details like if tgey operated the mets or not but I think they jumped directly to lonsurf. 

I hope you get into trial! 

They didn't tell me what

They didn't tell me what specific mutation over the phone. I assume that the Onc will go over the results with me next time I see her in person.

I guess that Oncs in practice who are reading journals regularly have a different opinion about things. Something that is statistically significant in research results might not be "real world" significant for treatment outcomes. You read these reports and it's like, this new drug shows promising results!!! PFS is 5 months with the drug, and 4 months, 29 days without! We the patient have to weigh that against quality of life and so on. We are really just rolling the dice every time anyway with cancer if we aren't on the immunotherapy track.

Real Tar Heel

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

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

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

abita

Tueffel said:

The same

My dad kind of got the same news as you got. Fast growing multiple tumors (5-6) in both lobes of liver. KRAS and MSS, his CEA is 30 but his liver is suffering a bit. The doctors will try transarterial chemoembolization in short TACE. So for now just regional approach or they only treat the liver and want to withhold FOLFIRI until lymphnodes or lungs are involved. Maybe this regional approach is also something for you? Just based on the information you might have it as an additional option. 

But dont give up! I am sure there is something around the corner.

Tueffel

Did they say what causes it

Did they say what causes it to grow fast? Is it a mutation? Whenever I switch treatments, or am told I can wait a few weeks to restart, I get told that colon cancer grows slow. So wondering what causes it to grow fast. Fast growing scares me.

Real Tar Heel

abita said:

Did they say what causes it

Did they say what causes it to grow fast? Is it a mutation? Whenever I switch treatments, or am told I can wait a few weeks to restart, I get told that colon cancer grows slow. So wondering what causes it to grow fast. Fast growing scares me.

They don't know, or haven't

They don't know, or haven't started guessing, or aren't telling. It's the same pattern, nothing for almost a year, then several appear within the span of a few months. First time was after adjuvant chemo, second after resection. They guessed that the primary had been growing for several years and had just started to spread in the beginning, now they don't know. I read a study recently that showed recurrences happened with all people in a study who were taking iron supplements, which would include me. That might be it. I am concerned about getting a second opinion now. They've scheduled chemo to start on Monday, and maybe I shouldn't wait.

Real Tar Heel

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

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.