Regorafenib - any good outcomes? info?

[Kathleen808]

Hi Friends,

As I mentioned Dick's scan from 9/13/13 showed progression. Today we met with his local onc and he recommended Regorafenib and then looking for clinical trials. We are all interested in the study at Stanford which uses immune therapy. We are also meeting with Dr. Castro here in Hawaii on Thursday. He specializes in personal chemos and treatments and he is one of the lead docs for caris - a group that looks at DNA. We have a call into Dr. Lenz who has been seeing Dick for the past 4.5 years and we are seeking his opinion. So, we are in the seeking stage and hoping to find the right plan for this step. We feel that so many treatments are almost developed or just starting out and we hope we go in the right direction.
So, back to my original question. I know that people on the board have been on regorafenib - can you please share your stories? Since you take the pills for 3 weeks and then only get a week off, are you sick all the time? How sick? Did your progression stop? For how long?

Thanks.

Aloha,
Kathleen

[Candyys03]

For me it's not too bad.I am on my 3rd month.I do 3weeks on and 1 week off.
The worst thing for me is the hand and foot syndrome.I get the foot syndrome bad by the 3rd week but it goes away on my week off.
Others have blood pressure problems and, or a rash.
I will have a scan the after this cycle and see if its working or not.

Candy

[concernedrelative]

Feel free to search the scientific name of the drug for my posts but suffice it to say after 1 3/4 rounds, my wife's progression worsened and the drug showed no efficacy defined as stabilization and/or shrink. She also had hand/foot syndrome the worst she's ever had and was nearly incapable of walking by the end of cycle #2 (at 37 y.o.) with no other health problems.

[Guinevere]

I'm in the middle of my second round (4 pills once a day for three weeks and then one week off) and I'm having problems with bone pain in my hips, pelvis, thighs and calves. The pain went away on my week off. However, it's gotten serious enough that she wants to see it's doing any good. I will have to say that nausea hasn't been an issue even if lack of appetite is. I have problems with hand/foot but no cracks or sores. Hope this helps!

God bless ~
Guinevere

Oh yeah, mouth sores and fatigue can become a problem. I've dealt with both so much over the years, I forget to mention those both here and when talking to my onc.

[Candyys03]

There is fatigue but it's not too bad and my mouth just gets dry and sensitive not a mouth full of sores.
My hair is thing but not too bad.
Candy
http://www.mayoclinic.com/health/hand-f ... me/MY02430
Kathleen,
I'm not sick all the time.No diarrhea or vomiting.I have constipation,voice changes,mouth is sensitive,hand and foot syndrome.I started taking 4 pills a day for 3 weeks and 1 week off but the foot syndrome is bad for me and it was reduced to 3 pills.I take 3 pills a day for 3weeks and then 1 week off.I can't tell you if it works or not.I will have my ct scan after this cycle.

http://www.stivarga-us.com/hcp/mcrc/sup ... :ggl:brd:3

Candy

[DogMom]

I have been on Regirafenib since Jan 1, 3013. I am taking the full dose, 4 pills/day for 21 days, then 7 days off. I have not had the serious side effects, liver toxicity or high blood pressure. I do have a lot of fatigue, compared to all the other chemos I have been on previously, slight (unsightly but not uncomfortable) rash, GI issues, which I have had with all other chemos too, slight hand foot, and seriously thinning hair ( a first for me).
So far, I am either stable or have very slight progression, meaning about a mm per quarter. Some of my lung nodules are cavitating (becoming dead on the inside), but its in no way a cure. Honestly, I wonder every day how much longer I can stay on this drug.
Best wishes to you.

[Candyys03]

Dogmom,
I was told it gets easier on your body as your body gets used to it after the 4th or 5th month.
Did you experience that?
Thanks for sharing!
Keep in touch.
Candy

[DogMom]

Candy... I have not experienced that. My onc did tell me that most side effects crop up early on. It is less likely one will get new side effects after many months on treatment.

[Kathleen808]

Thank you so much to each of you who shared information. It is a huge help! I was told that Dr. Lenz has his patients start out on a smaller dose and they are finding that some side effects may be reduced. Did anyone else do this.
Thank you! We are in the trying to find hope mode and this helps.

Aloha,
Kathleen

[Lisahopes]

My mom only managed one cycle. It never helped stop/slow the progression.

She lost her voice and slept 23 hours a day.

The oncologist here in Germany said that she had to start on the prescribed dosis because there was only evidence of that dosis having increased life expectancy. She also said that in her experience the side effects were not less manageable than thos eof the other chemos.

I think my mom started on it too late.

[CheeseHead]

Aloha Kathleen,

I had the full dose immediately & side effects at first were perhaps high blood pressure (it was high when I started it and now I'm off Regorafenib, still taking BP medication).
Nothing else that was significant, really, until I got some slight hand/foot a while into the treatment. Wasn't too bad at all and it went away by itself.

For some weird reason the oncs where I got the R didn't do an initial CT so no way to be really sure but it did seem to keep things stable (based on ultrasound/other symptoms).
However, I got elevated liver values and got kicked out of the study. Liver kept getting worse until we threw Xeloda at it as a latch ditch effort. Fortunately, this reduced things and shrunk some liver mets.

So all in all a bit of a mixed message - but n=1 in this case, as always.

Good luck with the choices you're making,

Cheese

[trapbear]

HI Kathleen,
Our docs at UCSF start at half dose, then go up if tolerated. We are in the same shoes, may start regorafenib if they cannot do RFA on the three liver tumors which are growing, lung tumors are more stable. Keeping you guys in our thoughts.
Bill

[Kathleen808]

Thank you! All your information is very helpful!

Aloha,
Kathleen

[smokeyjoe]

I've started on my 3rd month of the stivarga, side effects have been constipation and high blood pressure which is controlled with blood pressure meds., on my week off the drug my blood pressure drops back to normal. Actually so far this cycle blood pressure hasn't gone up yet. Constipation I'm still fiddling around trying to find the right combo, senna and metamucil clear seem to be working for this. Other than that I've had no issues ..... I work every day, come home make family meals and really am enjoying the freedome from infusions. I just hope it's working ..... I have scans next week, but I won't find out results of that till I see my onc. next month. One very important thing you need to investigate is that some clinical trials I have seen you are excluded from if you have been on regorafinib ...... especially with immune therapy type clinical trials .... do a lot of research and ask a lot of questions before you go on regorafinib. Going on regorafinib while you search for clinical trials may backfire on you.