Regorafenib (and/or mytomycin C)

taraHK
taraHK Member Posts: 1,952
edited May 2012 in Colorectal Cancer #1
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
«1

Comments

  • luvmum
    luvmum Member Posts: 457
    2 cycles
    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
    taraHK Member Posts: 1,952
    luvmum said:

    2 cycles
    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

    Thanks!
    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
    pepebcn Member Posts: 6,331
    taraHK said:

    Thanks!
    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

    I don't tink Dora is referring to regoranfenib but to
    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
    luvmum Member Posts: 457
    taraHK said:

    Thanks!
    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

    xeloda vs regorafenib
    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
  • luvmum
    luvmum Member Posts: 457
    pepebcn said:

    I don't tink Dora is referring to regoranfenib but to
    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.

    Clinical trail in Hong Kong
    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
  • taraHK
    taraHK Member Posts: 1,952
    luvmum said:

    xeloda vs regorafenib
    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

    good luck!
    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
    taraHK Member Posts: 1,952
    luvmum said:

    xeloda vs regorafenib
    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

    good luck!
    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
    luvmum Member Posts: 457
    taraHK said:

    good luck!
    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

    It's not working for her
    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
    pepebcn Member Posts: 6,331
    luvmum said:

    It's not working for her
    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

    Dora look for Zaltrap on google!
    hugs!
  • pepebcn
    pepebcn Member Posts: 6,331
    pepebcn said:

    Dora look for Zaltrap on google!
    hugs!

    Had oncologist today and informed me we already have
    Regoranfenib in Barcelona , Good news since I'm Kras mutant!
    Dora Did they give her Regoranfenib alone or combinated with another drug?
    Hugs!
  • taraHK
    taraHK Member Posts: 1,952
    pepebcn said:

    Had oncologist today and informed me we already have
    Regoranfenib in Barcelona , Good news since I'm Kras mutant!
    Dora Did they give her Regoranfenib alone or combinated with another drug?
    Hugs!

    Pepe - now or later?
    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
  • luvmum
    luvmum Member Posts: 457
    pepebcn said:

    Had oncologist today and informed me we already have
    Regoranfenib in Barcelona , Good news since I'm Kras mutant!
    Dora Did they give her Regoranfenib alone or combinated with another drug?
    Hugs!

    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
  • pepebcn
    pepebcn Member Posts: 6,331
    taraHK said:

    Pepe - now or later?
    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

    Hi Tara ,don't need it for the moment, so something I'm keep
    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!
  • lena_hope
    lena_hope Member Posts: 6
    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
    lena_hope Member Posts: 6
    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
  • lena_hope
    lena_hope Member Posts: 6

  • coloCan
    coloCan Member Posts: 1,944 Member
    lena_hope said:

    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

    While,admittedly, this is from US,nevertheless,its a start,Lena:
    http://clinicaltrials.gov/ct2/show/NCT01538680
  • pepebcn
    pepebcn Member Posts: 6,331
    coloCan said:

    While,admittedly, this is from US,nevertheless,its a start,Lena:
    http://clinicaltrials.gov/ct2/show/NCT01538680

    Hi Lena, for the moment as is not approved yet is only available
    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
    lena_hope Member Posts: 6
    pepebcn said:

    Hi Lena, for the moment as is not approved yet is only available
    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.

    Hi Pepe
    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
    pepebcn Member Posts: 6,331
    lena_hope said:

    Hi Pepe
    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

    Hi Lena I have been speaking to my onc today.
    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!