thoughts on stivarga/regorafenib

abita

Anyone on this? Are the results good? Are the side effects bad?

SnapDragon2

I don't know anything about

I don't know anything about them.  Are you thinking of moving to it?

PamRav

Me too

I'd also be interested to hear what anyone has to say regarding Stivarga or Lonsurf   I am MSS and Kras mutated.  Theseseem tobe in my near future  ive been on FOLFOX and FOFIRI both with Avastin over the past years    Have had reoccurrences in both my lungs and liver  currently growing a few liver spotsthat are going to require treatment sometime in the near future   Thespots are not amendable  to surgery or abalation 

 

 

abita

PamRav said:

Me too

I'd also be interested to hear what anyone has to say regarding Stivarga or Lonsurf   I am MSS and Kras mutated.  Theseseem tobe in my near future  ive been on FOLFOX and FOFIRI both with Avastin over the past years    Have had reoccurrences in both my lungs and liver  currently growing a few liver spotsthat are going to require treatment sometime in the near future   Thespots are not amendable  to surgery or abalation 

 

 

were you off chemo, or on it,

were you off chemo, or on it, and the chemo just stopped working? Just curious as that is why I would be switching.

I don't have a mutation. 

It is an oral drug. So that will be weird. Like how do they give the pre-meds. I guess they give the nausea drugs as an in case. I have kind of liked getting that does before the drip that insures no nausea. 

PamRav

Off

I finished 12 rounds of Folfox in early December.  That scan in late Decmber and March were good.  Mays scan showed growth in a previusly stable liver lesion as well a a new one.  I'll need to go back on chemo but not right way. I am having an MRI of my liver in late June.  I think the doc wNts to try a different drug.  We havent sat down and discussed the details.  He threw out those drug names when i spoke with him on the phone about the last scan. I will meet with him after the MRI.  

Whats up with you?  You were/are on immunoth, correct?   Has that stopped working?

NewHere

PamRav said:

Me too

I'd also be interested to hear what anyone has to say regarding Stivarga or Lonsurf   I am MSS and Kras mutated.  Theseseem tobe in my near future  ive been on FOLFOX and FOFIRI both with Avastin over the past years    Have had reoccurrences in both my lungs and liver  currently growing a few liver spotsthat are going to require treatment sometime in the near future   Thespots are not amendable  to surgery or abalation 

 

 

PamRev, I Am MSS/KRAS

I am in the same boat.  FOLFOX to FOLFORI and now on Lonsurf.  Countless mets in both sides of lungs, though nothing in liver.  Cannot do surgery on me due to the extent of cancer.  The Lonsurf has held serve for me now since May, 2020 with some reduction of size on some of the tumors.  Lonsurf has not been bad other than getting tired, more so the second week of each two week cycle, and it has dropped my blood counts (Abs Neu most important) more than the other chemos.  They gave me an extra week off before last cycle to give it a chance to build back up.  

Bellesouth

PamRav said:

Off

I finished 12 rounds of Folfox in early December.  That scan in late Decmber and March were good.  Mays scan showed growth in a previusly stable liver lesion as well a a new one.  I'll need to go back on chemo but not right way. I am having an MRI of my liver in late June.  I think the doc wNts to try a different drug.  We havent sat down and discussed the details.  He threw out those drug names when i spoke with him on the phone about the last scan. I will meet with him after the MRI.  

Whats up with you?  You were/are on immunoth, correct?   Has that stopped working?

I took Stivarga

I was on Stivarga from December 30 - April 9. Over the past six years I have received Folfox, Avastin, Folfiri, 5FU bolus only, and Folfox again. Each with a side of 5FU. All of those had lost their charm on my lung mets, so Stivarga was next in line. My oncologist warned me that it is "not an easy pill" and the success rate is about 25%. 

I gave it a whirl, and it did a pretty good job of controlling the growths in my lungs. I took two pills per day, both in the morning after a lowfat breakfast. Surprisingly, I felt better on Stivarga than I had with all the other previous therapies. I had some hair thinning, and in the first month had some strange random muscle cramps. My biggest problem was how it affected the skin on my hands. I'll share details if you'd like. I only stopped taking it because I now have liver involvement, which is trying to be pretty aggressive. So clearly Stivarga did nothing for my liver in terms of keeping mets away or even controlling them. So now I am back on 5FU bolus and pump for 3 treatments and will repeat CT to see if that is doing anything for my liver. My oncologist discussed Lonsurf as an option, but did not encourage it. He said he's given it to ~25 patients, and it was not effective for any of them. Sigh.

Not sure if I answered your questions, but as I said will gladly go into more detail. Just let me know. 

abita

Bellesouth said:

I took Stivarga

I was on Stivarga from December 30 - April 9. Over the past six years I have received Folfox, Avastin, Folfiri, 5FU bolus only, and Folfox again. Each with a side of 5FU. All of those had lost their charm on my lung mets, so Stivarga was next in line. My oncologist warned me that it is "not an easy pill" and the success rate is about 25%. 

I gave it a whirl, and it did a pretty good job of controlling the growths in my lungs. I took two pills per day, both in the morning after a lowfat breakfast. Surprisingly, I felt better on Stivarga than I had with all the other previous therapies. I had some hair thinning, and in the first month had some strange random muscle cramps. My biggest problem was how it affected the skin on my hands. I'll share details if you'd like. I only stopped taking it because I now have liver involvement, which is trying to be pretty aggressive. So clearly Stivarga did nothing for my liver in terms of keeping mets away or even controlling them. So now I am back on 5FU bolus and pump for 3 treatments and will repeat CT to see if that is doing anything for my liver. My oncologist discussed Lonsurf as an option, but did not encourage it. He said he's given it to ~25 patients, and it was not effective for any of them. Sigh.

Not sure if I answered your questions, but as I said will gladly go into more detail. Just let me know. 

Thank you. My oncologist didn

Thank you. My oncologist didn't say anything about only for for 25% of those who take it. Good to know about the side effects. Did cream control the hand foot skin peeling? I am willing to splurge on cream if they work. The drugs I am on now caused all my hair to fall out, so no hair to thin. Bummer that is a side effect,  because the only thing, only single thing not distressing was thinking my hair and eyebrows and eyelashes would grow back. My hair currently grows to a quarter inch, fuzzy, then falls out. Interesting about the liver mets. Although my current drugs only keep the lung mets at stable with tiny growth, it shrunk the liver mets to too small to see on ct over a year ago, but you know, those teeny cells are probably still there waiting to grow. My current drugs don't have too bad side effect. Rash  and fatigue.

I guess in 3 and and half months, you didn't really see if it damaged your liver or heart. Those are the side effects I most fear. Did your oncologist mention those side effects? Yeah, I guess there aren't many options left for me.

 

 

abita

Bellesouth said:

I took Stivarga

I was on Stivarga from December 30 - April 9. Over the past six years I have received Folfox, Avastin, Folfiri, 5FU bolus only, and Folfox again. Each with a side of 5FU. All of those had lost their charm on my lung mets, so Stivarga was next in line. My oncologist warned me that it is "not an easy pill" and the success rate is about 25%. 

I gave it a whirl, and it did a pretty good job of controlling the growths in my lungs. I took two pills per day, both in the morning after a lowfat breakfast. Surprisingly, I felt better on Stivarga than I had with all the other previous therapies. I had some hair thinning, and in the first month had some strange random muscle cramps. My biggest problem was how it affected the skin on my hands. I'll share details if you'd like. I only stopped taking it because I now have liver involvement, which is trying to be pretty aggressive. So clearly Stivarga did nothing for my liver in terms of keeping mets away or even controlling them. So now I am back on 5FU bolus and pump for 3 treatments and will repeat CT to see if that is doing anything for my liver. My oncologist discussed Lonsurf as an option, but did not encourage it. He said he's given it to ~25 patients, and it was not effective for any of them. Sigh.

Not sure if I answered your questions, but as I said will gladly go into more detail. Just let me know. 

One more thing. Did the

One more thing. Did the stivarga shrink them at all or just keep them from growing?

I wonder if avastin has to be with oxalic or irinotecan. Folfox had stopped working for me, and irinotecan I am taking now which has controlled the lung mets,sort of, slight growth for some, no growth for others. But the enlarged lymph nodes showed up while on that.

Bellesouth

abita said:

One more thing. Did the

One more thing. Did the stivarga shrink them at all or just keep them from growing?

I wonder if avastin has to be with oxalic or irinotecan. Folfox had stopped working for me, and irinotecan I am taking now which has controlled the lung mets,sort of, slight growth for some, no growth for others. But the enlarged lymph nodes showed up while on that.

I had no liver mets

I had no liver mets until after I started Stivarga. Some of the lung mets remained stable, some decreased in size, and some actually had dimpling of sorts, which my onc said meant they were dying and collapsing inside themselves. 

I bought 40% urea cream as recommended by the manufacturer. However, I still developed incredibly painful spots that cracked open in the joint creases on the palm side of my hands, beginning with the thumbs. I kept bandages on them during waking hours to try and minimize contact with any surface. By the time I stopped Stivarga I had some pretty nasty joints on the first three fingers of both hands. Oncologist prescribed steroid cream, which worked wonders, but the damage was already done. The skin developed hard calloused places where the sores had been, and I could not bend my fingers in those areas. The calluses and crazy hard skin are starting to peel, and my hands feel much better. It was pretty severe, but not enough to stop treatment or even decrease the dosage. Keep in mind that it affects everyone differently. Some people get those on the soles of their feet and are unable to walk until healing commences. That can be especially dangerous to diabetics. When frustration and self pity started creeping in, I reminded myself that it could be much, much worse. 

 

I attached some photos showing the hardened skin after 2 months on Stivarga. I will try to get some pictures of the current state tomorrow. Apologies in advance for the size and quality. I am stabbing this out on my phone, well after bedtime

 

 

abita

that looks bad. and painful.

that looks bad. and painful. I get the nail bed infections in my toes and fingers, and those can get so painful I involuntary scream if I so much as bump them. And the rash i get can get really painful at times. Espescially around the neck and under my, not sure if I would get censored for the word. Oh my goodness, twice I got the rash in my butt crack, and yikes! so painful. But those slices in the fingers seem rough.

You did 4 rounds of pills so that kind of sounds like good results. No one has ever mentioned dimpling, although I secretly dream of and openly pray for the size not shrinking because there were cancer cells dying and not getting flushed out. I guess not since no one mentiond seeing dimpling.

So, it even seems worth it to try, if could do for a short time before any of the really permanent side effects with such good progress, but you did mention before that that isn't guaranteed and stivarga only works for about a quarter of patients. i don't have a mutation, so I wonder if that makes me a better candidate or not a good candidate. 

have you ever had erbutix? I started it with irinotecan after my lung nodule grew into a lung met while on folfox. Right at the time my liver mets had shrunk to foci cells. They had grown back to liver mets by the time I switch doctors and got started. But, the liver mets shrunk quick on it. The lung mets shrunk once, then just stable with slight growth.

Thanks for all the info. It is weird how mind messing up deciding on the treatment plan is when once I am on it, my brain goes in to fight and survive mode, and I hardly give it any thought between infusions.

Hope you get a good scan