STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

[janeandrea]

I was just wondering if anyone had any more experiences to share about Stivarga? Met with my onc yesterday and he really really wants me to try it. After a hospital-inducing attempt at irinotecan, I had sworn off all chemo. This was my first scan since then, and my mets have all grown about 20%, and all of a sudden I have a met in my kidney??!! that I had never previously been told about. But apparently it grew a little. He seemed to be onboard with my decision at no treatment before, but now is really pushing Stivarga - which of course he points out is not actually chemo.

My QOL is not that great day to day already, because of treatment damage. I am right now planning a trip to Chicago, my hometown, for a month and a half or so; this decision was made when I saw my onc about a month ago and he told me I probably had 6 - 8 months, as far as anyone can tell about that kind of thing. I don't want to feel any crappier during my time out there. This bone pain and chills and headaches I've read in this thread are concerning..I already fight headaches, and got them bad on Avastin, as well as HBP.

So - I'd really like some more info asap for more people if there are any more out there who have tried or are on this drug (was supposed to tell him my decision today but ended up sleeping all day).

Thanks!!

Jane

[janeandrea]

Oops this is an accidental post somehow. Please ignore, but read the one before!

[Busymamaof3]

I am interested in this too. I was offered a Phase 1 trial today but on the fence and Stigarvia is another option.

[Ashlee H.]

Jane - I am like you - done with chemo. FOLFIRI + Avastin was working on about 80% of my cancer and my markers kept going up. My QOL was awful and I was just done. I had turned down Stirvarga many times, but now this was basically my only option. So far here is my experience with Stivarga. My ONC started me on 3 pills a day. You take them with a low-fat breakfast. I'm capable of doing things at this point, but start to feel much better around 1. This lead me to ask my ONC if I could take the pills at night and sleep through those first hours, hoping to wake up feeling pretty good. He agreed I could take them at night, which I will start at the next round. I must admit, this is the easiest chemo I've been on. I've had a mix of minor side effects. The worse is loss of voice (no pain) and very sore feet - feels like I'm walking on hot rocks. I'm finding memory form in my shoes and mats throughout my house helps. For the past few months, my cancer markers have been doubling every two weeks. I've been on it for 2 1/2 weeks now, and my CEA had not only stalled out, but went down three points - big difference from the big jumps it was doing. Now, this might be a first reaction to the chemo in that that cancer doesn't know what to do with it and may overcome it. But, if it can keep me stable with a good quality of life, I would stay on it. No infusion. No gut issues. PM me if you have any questions. -Ashlee

[janeandrea]

Thanks, Ashlee, for your reply. Good news that it is the easiest treatment so far for you. That "hot rocks feet" thing is quite concerning...especially since Chicago is a walking town and it is summer. Are there any medications that help that side-effect that you know of? Chemo has always been pretty hard on me, even FOLFOX was.

[Ashlee H.]

Thanks, Ashlee, for your reply. Good news that it is the easiest treatment so far for you. That "hot rocks feet" thing is quite concerning...especially since Chicago is a walking town and it is summer. Are there any medications that help that side-effect that you know of? Chemo has always been pretty hard on me, even FOLFOX was.

No medications that I know of - ONC didn't offer anything. Cold water or cold packs help. The best thing I've found is memory foam. Hard surfaces are very painful. I'm told about half of the people get the foot thing, so maybe you won't.

[Kathleen808]

Hi Ashlee,

Thank you for your info. If possible, please keep posting how things are going for you. I wish you the very, very best. I hope Stivarga kicks the cancer's butt!

Aloha
Kathleen

[Asterix]

I'm glad it seems to be going ok for you Ashlee.

[janeandrea]

No medications that I know of - ONC didn't offer anything. Cold water or cold packs help. The best thing I've found is memory foam. Hard surfaces are very painful. I'm told about half of the people get the foot thing, so maybe you won't.

Ha, if there is a side effect, I'll get it! But here's hoping history doesn't repeat!

[Candyys03]

I was on Stivarga and it didn't work for me but it does work for others.
I got all kinds of side affects,hand and foot syndrome (worse than Neuropathy) and my cancer grew.
It is a chemo but some don't call it that because it is more of a life extender.
It was first approved by the FDA in September 2012.
So it is fairly new.

Web site-
http://www.stivarga-us.com/index.html

The most information I have found is on FaceBook.
Colontown
The Four Corners-Gated ColonTown Neighborhood
You have to be signed up,okd through someone else.
Many of us are on that site too.

Candy ( I am always green when I'm on chemo)

[Misha]

My mother is taking Regorafenib. After 4 cycles of Folfox, 2 cycles of Xeloda, 3 cycles of Folfiri and a Y90 procedure that the doctor forgot to tell her to go back on chemo, which resulted in a large multilobulated growth in the lower abdomen and pelvis, her onc at MDA recommended to go on Regorafenib.

She has completed is on her second cycle of 3 pills a day for 3 weeks. The first week of the first cycle was ok and similar to other chemo cycles. The second week she developed severe fatigue and even more loss of appetite. It's the third week that got scary. She developed serious chemo brain and had significant trouble communicating and remembering things. We had never seen her like this and told the onc at her weekly visit, which coincided with her last chemo day of the first cycle. He was worried that it might be a stroke, broken blood vessel in the brain or mets to the brain. He told her to go to the hospital ASAP. She went got scans and was held overnight. After a long stressful wait the results came back negative.

I had hoped that my mom would bounce back on her week off, but it was minimal. She was still very fatigued. Her onc was concerned about her going back on Regorafenib, but ultimately agreed to let her start her second cycle. Currently, she is on her first week of the second cycle and she is doing ok. She has lost some of her voice, but my father has her eating relatively well after finding out what foods work and what don't.

[janeandrea]

Misha, was your mom still sick from the side effects of the previous chemotherapies when she started Stivarga? And was she nauseous, or just had no appetite?

[Misha]

Misha, was your mom still sick from the side effects of the previous chemotherapies when she started Stivarga? And was she nauseous, or just had no appetite?

Prior to starting Stivarga, my mom was off chemo for about 12 weeks. She had Y90 surgery 10 weeks earlier and the doctors told her no chemo so they could asses the effectiveness of the Y90 procedure. The Y90 didn't work and a large tumor grew (I started another thread about this). So, no side effects from the previous chemo. As with most chemo patients, she suffered loss of appetite, but with Stivarga it is far worse. She has never experienced anything more than mild nausea on the various chemos...

[Sharona]

Just returned from the onc and I am not in the best of humors. Had a PET last Monday, and it shows that the chemo is not working. The mets in the lungs are numerous and growing. I will start Stivarga as soon as it arrives. Glad it seems to be working for you, Ashlee. Your progress gives me something positive to hang on to.
Sharon

[Ashlee H.]

Sharon - From what I'm hearing, the biggest thing I think the ONCs have learned is not to start patients on the full dose - 4 pills. Ease into it with 2 or 3 pills. For the first cycle, I saw my ONC every week for labs. I'm on my week off of Stivarga. I tire easily and my face has gotten really dry, but still side effects are not near as bad for me as the other chemos. Wanted to add a note here about my results. Although my CEA has stalled out...the CA 19-9 has only slowed. Where it was doubling every other week, the last results showed it went up about 25% - an improvement, but I want to see it go down. My feet are still sore. No peeling or blisters, but I have to limit my time on my feet. The memory foam mats help me around the house. I keep experimenting with things for shoes. So far the gel pads work the best, but I still have to limit my walking.