regorafenib (stivarga) work for anyone?

[Ashlee H.]

I'm glad you guys started this thread. My ONC said this was a possible drug for me. He told me he knows one ONC whose patient has remained stable while on the drug for 6 months. I'd like my ONC to get a few positive stories of his own before I go down the "R/S" path. ONC did say he is aware there is a dosing problem with the drug and most can't tolerate the initial dosage. Seems we've had a few here with liver damage from "R/S" - don't know if that was reservable or not. Keep us all posted on your progress - we are watching and hoping for the best possible outcome.

[concernedrelative]

Thanks JulieJ! Your words of support always mean so much to us. It would be rather remarkable if we could beat the beast back for an extended length of time. We are feeling a tiny bit hopeful because the last PET/CT indicated a near full occlusion which would indicate a >1cm tumour (more likely multi-CM). And (I know TMI) but yesterday a.m., my wife had a BM the normal way which hasn't happened in months. So either this Rad needs to have his glasses checked or we've got some good stuff happening here!

While I can see easily see how this drug is intolerable to many older patients or ones with other significant complications, it would seem to be one that definitely should be discussed thoroughly with one's Onc. Although my wife was very apprehensive when starting it and some swings between the big D. and constipation have been even more pronounced then while on Xeloxi, we've generally been able to stay on top of side effects to date. We'll see for sure in the upcoming cycles esp. with the neuropathy.

Cost is always a concern for many; we've been told cash price for this drug is $12,500/monthly. Don't know if I've mentioned this before.

Thanks for the note Ashlee. I hope others can derive from our posts a range of possible experiences so they have the best info available before diving in.

As an aside, although it has only been 1 cycle; actually less that 1 since she stopped 3 days early due to neuropathy issues and will be dose reduced to 50-75% in the upcoming cycle, my wife's labs have been excellent. We've been dealing with a minor protein deficiency for a few months but otherwise "normal range".

[ammthere 4mom]

Update on my mom: She has just finished her 5th cycle of Stivarga. She is experiencing some foot pain (in the form of a 'hot spot' on her heel) and a slight uptick in fatigue (a short nap resolves it as a general rule). Her appetite is good and the weight loss has stopped. Her CEA is holding steady (no increase in 4 months) and she is generally feeling pretty good. She continues to experience shortness of breath (all other diagnostic studies have ruled out any cardiac or pulmonary causes of same) and so her dose is currently at 50%. The Stivarga nurse has repeatedly told mom that Stivarga is 'flexible with the dosing" to address issues that come up. So far, this has been more tolerable than infusions. I reviewed her recent EOB and the insurance indicates that the monthly cost for this was $10,136 (approximately).

I will update once we get the CT scan results.

[Candyys03]

Hello Everyone!
The 3rd week of my stivarga my dose was changed to 3 pills a day due to the foot syndrome.
I started my second 2nd cycle on Saturday 8/3.

I am the type of person who likes to be prepared for whatever side affect happens before it happens but since stivarga is new it does not really work that way but I have learned a few things that I would like to share with others on stivarga or going on it.

FYI-
Cost- It is very expensive.My co-pay was $2,000. Go to the website and in roll in the Reach Program-
http://www.stivarga-us.com/how_to_access_stivarga.html 1-866-639-2827
I qualified for the Reach Program and the financial assistance at my hospital.

Haven't had the diarrhea yet it's more like cookie dough.Much better so far than being on irrinotecan.
A little nausea but No vomiting yet either.
My voice changed it is now raspy.
Tired all the time so I m taking some extra protein.
Got a fever the end of week 1 but because no one knew why they sent me home with antibiotics.
I have an earache which comes and goes? I've never had an earache in my life.
Also got hand and foot syndrome -feet-hurt,red,blisters,on fire couldn't walk and right hand peeling,red and sore.
Use utterly smooth lotion ,utterly smooth 20,or aquaphor.
Soak feet and hands in in epson salt.
Use gloves on hands.
Sometimes I itch but no rash.Got a rash on both of my legs at the end of the 3rd week but they think it was from the heat (hot in CA) and it went away.
My eyelids swelled up the and of the 3rd week but it also went away.
Feet went back to normal on my off week.
Mouth got sensitive but no sores.I use baby tooth brush and toothpaste.Use non-alcohol mouthwash.Peridex oral rinse is the best it is only sold at the dentist and it is expensive.
The stivarga nurse said to use a saltwater rinse- 1/4teaspoon of salt and 1/4 teaspoon of baking soda.She said it is also good for the mucus I always seem to have in the back of my throat.Honey is also good to sooth your mouth and throat.
The hair is thinning but not falling out by the handfuls.
Alot of stuff to be taking care of when you just want to sleep.
It's really hard to do any kind of exercising on this chemo or even with neuropthy.I feel so weak.
The stivarga nurse also told me that after 4 or 5 cycles it gets easier as your body gets used to it.
Not sure if some of these are side affects or a reaction to the chemo.
So far my labs and blood pressure have been good though my INR has had it's ups and downs but is good since my week off.

amthere 4mom
When I had the foot syndrome it was very bad I also had shortness of breath maybe because my feet hurt so bad that after about 10 steps I felt like I was going to pass out.Once my feet got better I haven't had any shortness of breath.
I talked to my lung doctor about breathing exercises, oxygen and inhalers but he said I didn't need any of that at this time.

concernedrelative
Stay in touch with with your oncologist and the stivarga nurse.

smokeyjoe
My side affects started at the end of the first week.

I just want to do the best I can to get through it and hope it works.
If anyone has any more information or tips please let me know.

Candy

[Lisahopes]

Update on my mom: She has just finished her 5th cycle of Stivarga. She is experiencing some foot pain (in the form of a 'hot spot' on her heel) and a slight uptick in fatigue (a short nap resolves it as a general rule). Her appetite is good and the weight loss has stopped. Her CEA is holding steady (no increase in 4 months) and she is generally feeling pretty good. She continues to experience shortness of breath (all other diagnostic studies have ruled out any cardiac or pulmonary causes of same) and so her dose is currently at 50%. The Stivarga nurse has repeatedly told mom that Stivarga is 'flexible with the dosing" to address issues that come up. So far, this has been more tolerable than infusions. I reviewed her recent EOB and the insurance indicates that the monthly cost for this was $10,136 (approximately).

I will update once we get the CT scan results.

Strangely I was told the opposite of what the nurse is telling you.

I got the drug for my mom from an oncologist in Germany and I even called Bayer (the manufacturer) with my questions.

I was told that the currently proven extention of life only applies to the dosage as recommended and that reducing it is not evidenced at this time to bring about the same benefit. She did say that side effects were as manageable as those of chemo and not as bad as I thought.

Sadly my mom was given Stivarga very late in her illness, which I believe was a wrong decision made by her South African oncologist but it was a complex process as the medication is not yet approved by the equivalent of the FDA.

[Guinevere]

I started my first dose this morning and have heartened that there's been no immediate reaction. We'll see how the day progresses.

Guinevere

[Lisahopes]

I started my first dose this morning and have heartened that there's been no immediate reaction. We'll see how the day progresses.

Guinevere

So happy to hear that!

Keep up the good work!

[concernedrelative]

Depressing...

My wife's CEA came back at 73 up from a baseline of 28 prior to the regorafenib. Our Onc is away but will review the circumstances upon return. PAs are somewhat puzzled since the primary looks to be responding so well (final CT report came back with no evidence of tumour there any longer). No change to her restarting the pills on monday (at 75%) and we most likely will get a scan of the lungs in 2 weeks vs. waiting for early Sept.

Nothing we can do right now with this number but hope/pray the lungs take longer to improve. And they ultimately do with the CEA indicative of things breaking down at the cellular level. She had a nasty 2 day GI bug with inflammation but this # is too high on an absolute basis.

Sigh...

Have a good weekend all, Concerned Relative

P.S. we are aware of "CEA flare" but this jump would seem to be unusually large and more suggesting progression, wouldn't you say?

[Candyys03]

concernedrelative,
Maybe or maybe not!
It is not always accurate.
Sometimes my CEA shows a jump but my scan doesn't show anything or vise versa.
You can't always rely on the CEA .
If she was coughing it can make a difference too.

Praying for your wife.

Candy

[smokeyjoe]

So far the only issue I've experienced is high blood pressure, it's taking some juggling to find the right meds. by my fam. Dr. to control this, as of today they are much better after getting new prescriptions and starting them yesterday. I finish this round on Sunday and am on my week off the drug, see onc. and fam. dr. on Monday for bloodwork. So, we'll see how bloodwork is, I'm assuming it will be fine as I feel good.

[ammthere 4mom]

So mom has been on a half dose of Stivarga for the last cycle due to excessive shortness of breath. She had a CT scan last week and today received the results. The good news is that the liver looks fantastic. The bad news is that the nodes in her chest and slightly larger. Her onc attended a conference in the last week and one of the speakers was a Dr. Marshall who is apparently an (the?) expert on Stivarga. Dr. Marshall opined that less than full dosage has minimal effectiveness and so mom's onc has put her on a break from all treatment for a few weeks until her breathing improves and then they will revisit Folfiri which is mom's last option other than clinical trials. She has done well on Folfiri the two cycles she was on it and I hope that is the case again.