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" the Regoranfenib Post & other new drugs"

Pamela123
Posts: 12
Joined: Feb 2011

Just started a clinical trial for regorafenib, the first dose , of the first day. Hope this drug is effective for everyone who will take it. It is nice not to have to go to the infussion center for the day and come home with that pump. This drug is taken for 3 weeks on 1 week off. Weekly blood tests and monthly dr appt.

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Appreciate the update. Will you keep us informed on how you do with it? Thank you

Jennie

smokeyjoe
Posts: 1428
Joined: Feb 2011

Keep us posted, hope you have great success with this drug.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

who are interested in that drug!

janderson1964
Posts: 2215
Joined: Oct 2011

Yes please keep us updated. There are a lot of folks on here who are anxious to learn about this drugs effectiveness and side effects.

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

Article in todays Cure
http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1850#top

Brenda Bricco
Posts: 579
Joined: Aug 2011

Am I understanding this correctly? Those that got the actuall drug lived approxiamatley a month and a half longer than those that got placebo?

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Suppose is an average since many people does not respond to chemo but if there is regression life expects must be much higher, may be somebody can explain this properly?

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

We can only pray that these drug trials provide for longer survival and hope for us all.

All my best,

Cynthia

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

I was hoping someone else caught that too...
seems like hardly a plus

here4lfe
Posts: 306
Joined: Jan 2010

But some outliers lasted a year and some died earlier. But it was around 5 months for placebo and 6 for the treatment group.

Best

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

to know if it has worked between Scan controls every two or three months! .Somebody has to explain us better, but I repeat look for Aflibercept, that's the drug I think I'm going to use in case I need a new one!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Would be a good idea if you can change the name of the post for " the Regoranfenib Post & other new drugs" what you think about?.
Hugs!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Would be a good idea if you can change the name of the post for " the Regoranfenib Post & other new drugs" what you think about?.
Hugs!

Pamela123
Posts: 12
Joined: Feb 2011

Sounds good to me, im not sure how to change the name on the post. The doctors seem pretty excited about the possibilty of the drug, more so than just the 2 months extra of life. I will keep everyone informed as to what they find out.
Thanks

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

you don't have pic yet) you will see the button edit, by pressing it you can change any word of your posts , so just change the title inside the box!
It would make a long time post! .
Hugs and thanks Pam!

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

Great idea...A long time posting area for this and other new drugs could be a helpful collection, at least from my perspective. Hugs of thanks for the good idea.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

"The phase 3 trial called CORRECT showed that regorafenib improved survival by a median of 1.4 months, increasing the survival rate from 5 months with placebo to 6.4 months with the drug. Although it represents a small bump in median survival, it’s a 29 percent increase in overall survival in a hard-to-treat patient population."

Median is NOT average. Median is the middle point of any large scattered data. Understanding trial results gets tricky. This drug is VERY promising. The important thing to look at is the 29% increase in overall survival rate - and this is in people that have failed first-line and second-line treatments. These are people with no hope left at all, not expected to live much longer. And it is helping many of them. Also, think of what it might do if used earlier, which I think it will eventually be licensed for - a first-line treatment, just like Xeloda.

Those interested should go to the FightCRC.org website and watch last week's webinar with Dr Grothey - very interesting info from the ASCO meeting.

taraHK
Posts: 1961
Joined: Aug 2003

Great. Good luck with it!

Would you mind letting us know where you live/are receiving the drug? Or, if you'd rather not share that information on a public board, perhaps you could PM me?

I am still using Gemzar/GOLF now but might be looking at using this next and might have to come to the States to use.

Thanks

Tara

Pamela123
Posts: 12
Joined: Feb 2011

I'm sorry that my descriptions are not the most informative and desivive. I dont think i will continue this post due to lack of interest. The comment about "Who would want to take this drug anyway" kinda made that descision for me. Thank you for the help this site has giving me in my times of need.

Pamela123
Posts: 12
Joined: Feb 2011

I am from Michigan, and the trial is here.

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

I think there has been a misundertanding...if you read starting at the title of the post and continue to the body, you will see that the post you reference is actually very interested in this drug.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Regoranfenib Here! specially hear about effectiveness and secondary effects so is very important for most of us to know about you!
By the way have you started ? if so any special effect ?.
Hugs my friend!

janderson1964
Posts: 2215
Joined: Oct 2011

Please continue you to update us. We are all very interested in this drug.

steved
Posts: 835
Joined: Apr 2004

Have been reading a bit on these lately and thought I would post my interpretation of the data so far:

Regorafenib (Reg, hear forward to save typing)- is a blocker of VEGF receptor so works in the same pathway as Avastin (which binds VEGF A) aiming to interfere with development of new blood vessels in tumours. The big phase III trial described is certainly significant despite the confusing finding it only increased median survival by 1.4 months. The patient group , as described above, were a very late group who had not responded to all other treatments whose life expectancy was very short. It was extended by almost a third by the drug.In this group almost none (1%) 'responded' ie saw tumour shrinkage, but a good number had their disease stabilised- a good outcome in this group. It needs testing on earlier phases with more data on other end points- quality of life beingone of them. They are also investigating subgroups with the feeling there is a likely group of peoplpe who benefit (bit like the KRAS issue with cetuxamab).

Aflibercept- is described as a VEGF trap- it binds VEGF A and B and other factors that promote angiogenesis (blood vessel development). It is therefore being promoted as being able to do more than avastin. It too has a phase III trial (VELOUR) in 1226 patients treated with either FOLFIRI with placebo or FOLFIRI with aflibercept. Again survival was improved by about 1.5 months and progression free survival (stable disease period) was increased by 2.2 months. There was also a higher 'response rate' of 19.8% in the treatment group (11.1% in placebo) which is something the Reg study didn't find (though in different patient groups). The side effect profile does concern me though with Aflibercept with high rates of renal problems and hypertension.It is now being studied with FOLFOX.

Both are very important developments and I think there will be a race to get them approved and find a place in the protocols. They will initially be used late in protocols after others fail but as more studies are done in ealier groups they may move up the algorithms.

I do think people's experiences with these drugs MUST be reported here as they are invaluable to many of us.If people feel discouraged from doing so it is a huge loss to many of us interested in these drugs. They are truly the first big developments since avastin in a field that has been quiet for too long. For many of us they offer hope- that is vital.

steve

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

just notice it in case you r interested!.
hugs.

peterz54's picture
peterz54
Posts: 343
Joined: Feb 2012

This articles mentions a 1.4 month overall survival gain for people who did not fair well on first line

Trial Article at Medpedia

smokeyjoe
Posts: 1428
Joined: Feb 2011

Pamela...just wondering how you are doing on the trial drug so far?? From you're posts I'm thinking that you've had a weeks worth of the drug and I'm wonding if you're having any side effects etc. Hope it's going very well for you.

Pamela123
Posts: 12
Joined: Feb 2011

I think I should start over with my description of the drug trial for regoranfenib. I was dx with stage 2 cancer 5/2010. recurrance stage 4 4/2011and 5/2-12. I've had 3 surgeries for colon resections, radiation and i've tried all the drugs zeloda, oxiplatin, iranatecon, avastin. After my last surgery, this drug trial was recommended by my Onc. My Onc said the drug is known for stablizing and stopping growth, they are not sure yet about shrinkage, happens in some. But even no growth or stable is great to hear too. maybe this drug will lead to something that will cure.

I started on the drugs two weeks ago in Michigan. the drugs is taken with food, and lots of water. Four tablets every morning for 3 weeks on and than 1 week off. Blood is drawn and urine is taken weekly for the first 6 weeks, dr visits everyother week, ct scan every 2 months.

It is very weird not to have to go to the infussion center, get hookedup and after spending the whole day there, then taking home the pump. It gives a little bit of freedom and better life, as the other drugs took away feeling good.

The only side effects I have sofar (knock on wood) is a little fatigue, some foods taste a little different. Some effects they said to watch for are the usually suspects.

I will keep you posted on the progress. Thanks

smokeyjoe
Posts: 1428
Joined: Feb 2011

Yeah, infusion and chemo pump sucks.....if someone told me I could pop chemo. pills over infusions I would do that ANYDAY!!! Thank you so much for the update :) Keep us posted how it's going. You are our pioneer on this drug.

manwithnoname
Posts: 404
Joined: Jun 2012

Been looking into this, its called Metronomic chemo, meaning low doses orally but for much longer time frames.
Sometimes these protocols include non-chemo drugs. They can sometimes be much more effective without the side effects.

We have started this. It is still very new though.

Bear23's picture
Bear23
Posts: 84
Joined: Jan 2010

I am in the process of trying to get into the Aventura site. It really is amazing that there are no sites in New England. Aventura has not started dispensing the meds yet, about another week. My files have been faxed down and we are awaiting a reply. I would be number 5 on the wait list. However I just stopped Xelox on Friday and would need to wait 4 weeks before starting anyways. If I don't get my lung tumors to stop growing, I was told I have about 6 months. I have been on Folfox, 5 fu and avastin, Irinotecan and Vectibix, Xelox and avastin. I have not tried Mitomycin.

I agree that we need to keep talking and posting about what is going on with Regorafinib and other drugs. It gives us some hope that maybe, even though we are stage 4, there is something to help. Please keep posting Pam.

Valerie

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

I hope this and any other drugs can help.
Really huge hugs for you all and my prayers,

Hugs,
Pete

Ps I am not on chemo and my focus is natural health but if any drug new or old offers hope then I pray it delivers.

peterz54's picture
peterz54
Posts: 343
Joined: Feb 2012

I just read an article in press for Clinical Colorectal Cancer

Survival Outcomes of Bevacizumab Beyond
Progression in Metastatic Colorectal Cancer
Patients Treated in US Community Oncology - T. Cartwright

it indicates that mCRC patients who have completed their first line therapy and then take Bevacizumab (Avastin) beyond progression have a 6 month advantage in overall survival versus those that did not take Bevacizumab

steved
Posts: 835
Joined: Apr 2004

Thanks for this- can only find abstracts of the article online- do you have access to the full article {(if so can you put a link or perhaps send it as a PM for me to read through- prefer to make a judgement of the value of the data only after seeing the full article).

If I understand right the suggestion is that if you are on avastin and your cancer progresses you do still do better if you stay on Avastin (6 months longer survival overall, but only 4 onths better if measured from teh point where your cancer is deemed to have still progressed) than if you come off it. This is important as often doctors response to cancer progression on chemo is to stop or change that chemo and in the case of avastin that may not be the best thing. :It suggests, even in progressing cancer blocking VEGF slows the overall rate to death in CRC.

Worth making your docs aware of this if you are in this position but also on a personal level it doesn't address the issues of quality of life on and off avastin- only measures time till death as the end point.

steve

peterz54's picture
peterz54
Posts: 343
Joined: Feb 2012

Unable to provide link to artilce as I read it through a subscribers portal

here is abstract which you probably have seen

Beyond progression

you may be able to get full article from one of the authors. or have your ONC follow-up.

Our ONC intends to keep my wife on Avastin after completion of 1st line and this may be why.

You may be able to review Grothey's comments about this from about 2008 doing google scholar search.

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