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Regorafenib (and/or mytomycin C)

taraHK
Posts: 1961
Joined: Aug 2003

Has anyone heard of/used Regorafenib?

I guess my oncologist might be thinking of this as an option for me, at some point in the future.

Here is a link I just found: (note: I don't have any connections or vested interest -- just trying to gather information and share some along the way)

http://www.medicalnewstoday.com/articles/240536.php

ps He also mentioned mytomycin C -- a very old drug for treating colorectal cancer (oldie but goodie?)-- can be combined with 5FU or Xelodo -- anyone have experience with that.

Thanks!

Tara

luvmum
Posts: 457
Joined: Dec 2010

Hi Tara,
My mum has been taking it since march. She has 2 cycles so far yet her CEA continue to rise in the past 2 months...
Major side effect is mainly hand foot pain. Very serious that she cannot leave her bed.
I am more than happy to share her experience with you.
Is gemzar not working?
My mum's onc also thinking of giving her that next step.
Have you tried TS1?
Best wishes to you!
Dora

taraHK
Posts: 1961
Joined: Aug 2003

Dora -- Many thanks. I'm sorry to hear that the Regorafenib is causing such serious hand foot pain for your mother. I did see that listed as one of the possible side effects. I'm wondering if it's like Xeloda hand foot pain -- but that may be impossible for you or her to say!

I've only had one cycle of Gemzar (GOLF). My CEA is rising, which isn't a good sign. But, I'm on cycle 2 now -- gonna give it a little bit longer. I guess my oncologist is lining up options in case I have to abandon the Gemzar. No, I haven't tried TS1 -

davidh03 -- just realized you posted on this exact same topic a couple of weeks ago -- sorry! (no memory). I didn't realize no FDA approval in the States yet. How is your mom doing? Thinking of you both..

Tara

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

Mytomicyne, Regoranfenib is not even in the US or EU market ,just in trials , seems is going to be released this month in the US.
It seems side effects are minimum and not noticeable , I'm I right Dora?.Concerning to Gemzar just 1 round is not noticeable in CEA as per my onc so don't loose hope in this drug Tara!. And please keep us informed about Regoranfenib if they put you on that, is the new hope on CC!

Big Hug to both, ladies.

luvmum
Posts: 457
Joined: Dec 2010

Hi Pepe,

My mum is participating in a clinical trial here in Hong Kong (not the placebo type study), that's why she is taking it.

Her appetite is good throughout the whole medication process, except when her hand and foot were so painful that she didn't want to eat at all.

Another patient who is also taking regorafenib had problem with his liver and stopped for a week and resume after his liver numbers back to normal.

These are all I know so far.
Dora

luvmum
Posts: 457
Joined: Dec 2010

Hi Tara,

From my observation, the hand foot pain from regarofenib is a lot more severe than xeloda. My mum had hand foot pain before but never to the extend that she needs wheelchair and couldn't sleep. She described the pain like a stab to her heart as well. The pain from hand and foot link to her heart.

I asked the nurse if regorafenib will be approved in May this morning and she said it may not as this kind of approval always have some delay.

She will have her first CT scan after 2 cycles of regorafenib tomorrow. I'm so worried.

Dora

taraHK
Posts: 1961
Joined: Aug 2003

Dora - good luck to your mother on her scan! I will be thinking of you both.

How great that she can get on this clinical trial.

What is she taking for pain relief (for the hand foot pain?).

@ Pepe -- I quite agree with you about not stopping a chemo regime after just 1-2 times, due to CEA. I think 4 at least. Luckily, my onc agrees now! I'm on #2 now and we'll see how it goes. I didn't have that dramatic blood pressure drop this time (who knows what that was about!) so it looks like smooth sailing...

Tara

taraHK
Posts: 1961
Joined: Aug 2003

Dora - good luck to your mother on her scan! I will be thinking of you both.

How great that she can get on this clinical trial.

What is she taking for pain relief (for the hand foot pain?).

@ Pepe -- I quite agree with you about not stopping a chemo regime after just 1-2 times, due to CEA. I think 4 at least. Luckily, my onc agrees now! I'm on #2 now and we'll see how it goes. I didn't have that dramatic blood pressure drop this time (who knows what that was about!) so it looks like smooth sailing...

Tara

luvmum
Posts: 457
Joined: Dec 2010

Hi Tara, got the CT result and both the liver and lung tumor are bigger than before. So they are going to stop this drug for her.
Do u know if there are any other drugs that will be out this year?
How are you feeling with gemzar?
Best wishes to you,
Dora

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

hugs!

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

Regoranfenib in Barcelona , Good news since I'm Kras mutant!
Dora Did they give her Regoranfenib alone or combinated with another drug?
Hugs!

taraHK
Posts: 1961
Joined: Aug 2003

Pepe -- will you be starting on Regoranfenib now -- or is this something that you might 'stick in your pocket' for later (hopefully won't ever need!). Glad to hear it is already available in Barcelona. I may have to move there! But not yet -- I'm still on the Gemzar -- altho results are a little shaky right now -- but I'll give it more time....

Tara

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

in my pocket just in case.There are some tricks here to get Regoranfenib. They put you in a trail or the give it to you as compasive chemo, just until they get the EMA, approval ( our own European FDA),but they are doing for everybody who needs it!

luvmum
Posts: 457
Joined: Dec 2010

Hi pepe,

Since its a trial, they use it as single agent. 120mg per day for three weeks.

Any evidence shows it works better with other drugs? Using this alone made my mum stay at home most of the time. Cannot imagine if she has to use it with other drugs.

It works very well on the other patient whom I met in the hospital! He does not have much pain and can still go to work and travel when he was taking it.

Best wishes,
Dora

rajivmmehta
Posts: 1
Joined: Jan 2013

hi

we are to administer regarofenib to my father and hence looking at patients who have taken this medicine adn how has been the response and its efffectivness.any kind of reply is welcome as we are the first one takin in india.tks and rgds

Gso777
Posts: 1
Joined: Jun 2012

Hi Dora,

How did your mom get into clinical trial in HK and got the real regorafenib and not placebo. Which hospital she had gone to? Queen Mary hospital or Prince Wales ? I am an advanced colon cancer patient in Macau. My Onc trys to help me into either one clinical trial but were told 50/50 chance to get placebo. I am in an urgent need, can't waste time on placebo. Tell us how is your mom doing now. What chemo she is on?

Thanks

G.so

lena_hope
Posts: 6
Joined: May 2012
lena_hope
Posts: 6
Joined: May 2012

I am trying to find a Regorafenib clinical trial for my aunt. Does anybody know how we can have access to the trial in Barcelona?

lena_hope
Posts: 6
Joined: May 2012

I am trying to find a Regorafenib clinical trial for my aunt. Does anybody know how we can have access to the trial in Barcelona?

Thank you very much

Lena

coloCan
Posts: 1842
Joined: Oct 2009

http://clinicaltrials.gov/ct2/show/NCT01538680

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

in A few Social Security hospitals unfortunately not available to non EU.Citizens. Will ask tomorrow to my oncologist if is possible under private bass is ! Hugs.

lena_hope
Posts: 6
Joined: May 2012

Thank you very much for your help.

We are  desperatly trying to find a way to get her the Regorafenib, as the doctors told us it is her only option for survival.

We have contacted a hospital in Malaga, but they said the drug won't be available until July

Any information you can give us would help

Thank you again

Lena

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

he told me as I told you it is only available for SS patients , he does not know if they would accept private or foreign customers since is a huge trial were there are many countries involved, it seems Spain is leading the trail from this hospital, try to contact there in the oncologic trials department.( in Spanish: departamento de ensayos clinicos)

ICO Hospitalet
Hospital Duran i Reynals 
Gran Via de l’Hospitalet 199-203
08908 l’Hospitalet de Llobregat
93 260 77 33
Will supply tomorrow couple more hospitals which are involved in the trial in Barcelona.
Hugs!

lena_hope
Posts: 6
Joined: May 2012

Hi Pepe,

The hospital that we have contacted in Malaga is having the clinical trial. However, they said that they won't start recruiting until July.

If she goes to the hospital you told me about, would she be able to get the drug before the trial phase IIIb starts (under compasive use)?

Thanks again

Lena

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

giving the drug under this hospital supervision.
Hugs.

lena_hope
Posts: 6
Joined: May 2012

Thank you so much Pepe. We got her an appointment in France

She will strat the treartment in June :)

Lena

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

know!

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

May be you will be near Barcelona! LOL.
Have a hug!

coloCan
Posts: 1842
Joined: Oct 2009

seeking approval for regorafenib for treatment of mCRC.Application for European marketing authorization also submitted so perhaps more readily available to more in need in the near future.....

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

Hugs!

coloCan
Posts: 1842
Joined: Oct 2009

inpharm.com/print/172095
,announcing FDA's granting "priority review" with a bit of info on it

I've come across other stuff but have no links,such as Rilotumumab (typing that got me dizzy),Ganetespib and MORab-004.....

coloCan
Posts: 1842
Joined: Oct 2009

medpagetoday.com/MeetingCoverage/ASCO/32902

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

Steve.

geotina's picture
geotina
Posts: 2047
Joined: Oct 2009

Should be FDA approved about the end of summer. One of the other web sites like Colon Cancer Allience or Fight Colorectal Cancer has had some articles on this drug. That is where I found out what the status of approval stands. Check their web sites and if you join (no charge to join) they will send you e-mail updates on colorectal cancer, web discussions, etc.

A member of the colon club just received this drug at the University of Michigan in Ann Arbor, Michigan. She posted that she received it just a few days ago.

Best wishes to all - Tina

jain db
Posts: 8
Joined: Oct 2011

Hi rajiv,

My dad in Delhi is on regarofenib since two weeks. We were told nobody else in india has taken this. He is feeling awful. We are thinking of taking him off it.

 

ritu malhotra

 

gandhi_subash
Posts: 1
Joined: Mar 2013

Hi Ritu,

My father is a patient of Colon Ca with Liver Mets was on FOLFOX+Erbitux first line Chemo, Right now our Oncologist has indicated Stivarga as the main option right now hence may please let us know reg how did you manage to get stivarga (RegoraFenib) at India (Chennai). so that we'll try it in my father's case too.

 

Thanks in advance with kind regards.

SUBASH.G

gandhi_subash@yahoo.co.in

s.v.g.subash@gmail.com

PatchAdams
Posts: 272
Joined: Nov 2011

Kimby tried it, Mytomycin, and it almost killed her.  

Terry used it and it didn't help her but by then, her rectal cancer was in her NOSE and thyroid.  I know a lot of people asked Kimby about it on Colon Club.  I 'think' she used the same username on Colon Club so you could do a search.  I've deleted all the emails  and private messages from people who've died because I couldn't deal with the reminders of the loss. 

Fede
Posts: 7
Joined: Mar 2013

Hi,

 

I was researching a bit about the Regorafenib for my father, it was launched in the State in the first quarter 2012, but I can not find positive responses, I have only heard about awful side effects and no efficacy, is it true? or it is a total failure, one more chemo failure?

 

Thanks, but I can not find out information (experiences enough) about this NEW drug... somebody could tell me the experiences?

 

A hug for all.

 

 

 

 

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