Good news, Stivarga/Regorafenib

[miabella1]

I have been on Regorafenib since April 2013, and have completed 6 cycles. My first two rounds were not completed because of non-related symptoms and short hospitalizations. After round 4, I had a CT scan that showed some progression of disease. My Onocologist increased my dosage to 4 pills a day, instead of three for cycle 5. Four pills per day made Cycle 5 miserable, so we dropped back to 3 pills a day for cycle 6. I had a scan on Saturday, and saw the doctor this morning for the results.

"Significant improvement in implants and ascites seen throughout the abdomen and pelvis in comparison to CT 08/04/2013. No significant retroperitoneal or pelvic adenopathy is evident."

Happy Dance going on here! My CEA also dropped from 2.7 to 2.2 since last month.

[ecbreed]

Great news!

[pollo65]

WOW great
pollo 65

[Guinevere]

That's wonderful!

God bless ~
Guinevere

[janderson]

That's great news. It's good to hear that someone is having positive results from Regorafenib.

[karin]

Happy dance time!! Doing it with you!!:)

[O Stoma Mia]

I have been on Regorafenib since April 2013, ... Happy Dance going on here! ...

[Patricia Ann]

Congratulations miabella1....Since I'm sure my onc will be suggesting this drug at our next appt., I would just like to ask you a few questions. What were your side effects? How did the change in dosage from 3 pills a day to 4 make things horrible? Your post is the first one I have read that has been positive about this drug. This drug seems to be my only option. I'm trying to make a decision if quality of life will still be there if I go on it. I have exhausted all other chemo drugs and the radiation on my lungs have done a lot of damage.

I would appreciate you sharing your experience with me. It would sure help in my decision process.

Praying for your continued success, God Bless you,
Patti

[miabella1]

Patti, I have been a three pills a day, three weeks on and one week off, since April, except for cycle 5 when my Onocologist suggested we try four pils a day. Before cycle five, the only side effect I was having was the loss of appetite and weight loss. I have lost near to 50lbs since starting in April, but had the extra weight to lose. During cycle five while on four pills a day I had extreme fatigue and nausea, mouth sores, the start of Hand and Foot Syndrome, as well as the loss of appetite and weight loss. Cycle 6 I returned to the three pills a day, but unfortunately all the the side effects remained with me. My mouth sores have improved to just having a tender mouth. For nausea I take Zofran, for fatigue I take naps as needed. I use Udderely Smooth Extra Care 20, twice a day for the Hand and Foot Syndrome. The side effects are annoying, but manageable and worth the results especially because I Am Signet Cell.

The scan I had before Cycle 5 showed disease progression. I could have quit Regorafenib then, but instead tried the higher dose for cycle 5. I was not able to maintain the higher dose for cycle 6, but still had significant improvement on the my last scan. It makes me wonder if the success rate for Regorafenib is susceptible to the amount of time you are on it, are doctors and patients giving up on it too soon? Things that make you go hmmm......

I started Cycle 7 yesterday, I will let you all know how well that goes at the end of the cycle.

[rosa01]

Fantastic news!

[Bev G]

What wonderful news you shared. I am really happy for you. I have read a few times that if one can make it a couple of months on Regorafenib it becomes much easier to tolerate. While I don't understand why that would be the case, I'm glad that it seems to be, as I know your story will give so many new hope for this difficult drug.

I will pray for your continued success!

Bev

[SFLwife]

Great news miabella! Stivarga is next on our Onc list. I don't know if my hubby will be up to more chemo though. Decisions...

[Patricia Ann]

Thanks miabella1 for sharing your experience. This drug sounds a lot like Xeloda. And just like Xeloda, it seems to be so toxic at the levels they want you to take. I'll really have to think about this - I'm not even sure it will be an option. I see my onc. on Oct. 23rd and for some reason, I get the impression no one is anxious for me to come in. My last appt. with my radiation onc., the doctor looked like a deer caught in the headlights. He told me it was bad but said it was out of his realm and to see my reg. onc.

Looking forward to hearing how your next cycle goes. Good Luck!

God Bless you,
Patti