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Clinical Trial -- regorafenib - anyone on this? or have info?

donnare
Posts: 266
Joined: Jun 2009

If my husband can stay healthy for the next 10 days, he can start this trial. Hoping for some good results after 7 months without chemo, progression to lungs, failed clinical trial, infections, small bowel partial obstruction -- a real rollercoaster. Despite all that he still has a great attitude. Would be great if he could get a break. Has anyone had this drug? Know anything about the side affects? Results? His oncologist feels it is worth a try.

Trial Number: PBAYER008/12-027

BAY 73-4506 / 15967: An open-label phase IIIb study of regorafenib in patients with metastatic colorectal cancer (CRC) who have progressed after standard therapy.

Thanks,
Donna

Lovekitties's picture
Lovekitties
Posts: 2941
Joined: Jan 2010

I beleive this drug was approved by the FDA in the US near the end of Sept.

http://www.multivu.com/mnr/57608-bayer-regorafenib-for-treatment-of-metastatic-colorectal-cancer

If in the US you may want to check to see what benifits it is to be in clinical trial versus receiving it as a normal therapy.

Marie who loves kitties

donnare
Posts: 266
Joined: Jun 2009

Thanks Marie. We are in NJ and he is treating at Fox Chase. His doc told us it was approved but they were still accepting patients on the trial Both Folfox and Folfiri stopped working, and he was on another trial that didn't work also. I will ask his doc on Wednesday, but I think there might be insurance issues with offering him the drug as normal therapy (something about first line treatment .. not sure, feel a little overwhelmed lately), but thanks, I will definitely ask, and thanks for the website too.

Be well,
Donna

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

Hi Donnare,
Hope your husband stays healthy and glad he has a great attitude - that's key in this fight. I don't have info for you on Regorafenib but just wanted to give you my support. My onc was going to put me on Regorafenib but he switched it Zaltrap instead. We are keeping it in the war chest though. I pray it gives your husband some relief.
My best to you,
Ron of SharonVegas

taraHK
Posts: 1961
Joined: Aug 2003

Hi Donna,

I haven't been on the drug so can't help you with side effects information. But it is in my 'war chest' too -- I have already investigated clinical trials - but I'm currently on chemo which is 'working' so not ready yet. My understanding is that the clinical trials for the drug are special in that you are guaranteed being on Regrafenib and not a placebo or another drug. This is good. Also, I understand it is given n a pill form -- without any other drugs (i.e., not in a 'cocktail'). I'm not sure about that.

Wishing your husband all the best!!

Tara

donnare
Posts: 266
Joined: Jun 2009

Thank you Ron and Tara .. really appreciate the good wishes. I am wishing you both the best, and am happy you have this in you "war chests" too.

Be well,
Donna

Rubyrose
Posts: 47
Joined: Feb 2011

Hi Donna
My husband started on regorafenib on 5 September. It's in four week cycles, three weeks taking four tablets a day, then a week off the tablets. The first cycle, he was very tired and weak but has improved a little since starting the second cycle. Hopefully will keep improving. He has CRC mets to liver and stomach lining. We are in Australia and it is a trial drug here. Good luck

Rubyrose
Posts: 47
Joined: Feb 2011

Hi Donna
I'll be interested to see how your husband goes. My husband has had a slight skin rash which is sometimes itchy, but is not bad. He also has a great attitude and his goal is to get back to playing golf. I pressed the "post comment" button twice by mistake and couldn't delete one so have edited this one. Keep positive.

donnare
Posts: 266
Joined: Jun 2009

Hi Rubyrose ... thanks for your good wishes and reply to me. I hope your husband has good results with the trial also.

My husband's treatment plan sounds similar to your husband's. He also had a portal vein embolization in hopes of removing the right side of his liver. He was responding to the Folfiri with Erbitux and they were able to go in and ablate the mets on the left side. They went ahead and did a portal vein embolization, in hopes of removing the right side of his liver. Unfortunately, when they went to surgery to remove the right side of his liver, they found the mets had returned to the left side again.

Then the standard care stopped working, and they found spots on his lungs, so they put him on a Phase I clinical trial, which didn't work, and the spots on his liver and lungs grew. They just put a stent in his liver because his bilirubin levels rose.

He has had cancer for over 3 years, but things have been pretty rough since January. He now has constant fatigue and alot of pain in his liver. I am so hoping that this trial will give him some relief and possibly be a "bridge" to something that can help him.

Look forward to hearing how your husband is doing with the trial. Hopefully, my husband can start this week .. possibly by Friday.

Thanks again for your reply.
Donna

Rubyrose
Posts: 47
Joined: Feb 2011

Thanks Donna - as you say, we are going through similar situations. My husband is very tired but otherwise OK, no pain. He does also get depressed, so I organise meeting up with friends etc so he hasn't the time to think about it. It would be good for us to keep in touch. I too would like to hear how your husband is going. Jackie

judieanne
Posts: 10
Joined: Oct 2012

Hi Donna & Rubyrose
I am new here but thought I would add my experience with regorafenib. I also am in Australia and my husband has been on Regorafenib for about 6 weeks now. He has handled it well with fatigue being the main side effect. He has a scan to see if its working in two weeks. It is hard to find anyone that can speak of results - I guess because it is relatively new. I will follow your journey with interest and wish you all the best.

Rubyrose
Posts: 47
Joined: Feb 2011

Hi Donna
Am interested in whether your husband has started on the trial. Mine went for checkup today and they were pleased with him. Blood counts good, red cells low which is why he' so tired. Hope things go well for you. Rubyrose

Rubyrose
Posts: 47
Joined: Feb 2011

Hi Donna
Am interested in whether your husband has started on the trial. Mine went for checkup today and they were pleased with him. Blood counts good, red cells low which is why he' so tired. Hope things go well for you. Rubyrose

judieanne
Posts: 10
Joined: Oct 2012

Anyone out there with any updates on their treatment with regorafenib or what comes after that??

Rubyrose
Posts: 47
Joined: Feb 2011

Hi Judieanne
My husband has just completed three months of regorafinib. He has scans in mid December. He is very tired. No pain. Skin rashes mild. Will see what scans show. Also having CEA tests this week. Last CEA was 1600. Hope all is ok with you. Rubyrose

dianelynn41's picture
dianelynn41
Posts: 71
Joined: Jan 2011

My husband is suppose to start this new chemo next week. He's stage IV, just looking for something to shrink the tumor to give him a better quality of life. His rectal tumor came back in the same place and is protruding where his rectum use to be. Can't sit, only comfortable laying down.

Will keep watch your updates.

Diane & Roby

Rubyrose
Posts: 47
Joined: Feb 2011

Hi Diane and Roby - I would be interested to see how your husband is going and whether he has started on the regorafenib. My details are in my reply to Judieanne. Stay positive and good luck. Rubyrose

Rubyrose
Posts: 47
Joined: Feb 2011

Hi Diane and Roby - Can you also let me know more details of the vitamins you are using. What country do you come from? We are from Australia. Rubyrose

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