Regorafenib (and/or mytomycin C)
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
Comments
-
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!
Dora0 -
Thanks!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
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..
Tara0 -
I don't tink Dora is referring to regoranfenib but totaraHK 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
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.0 -
xeloda vs regorafenibtaraHK 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
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.
Dora0 -
Clinical trail in Hong Kongpepebcn 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.
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.
Dora0 -
good luck!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
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...
Tara0 -
good luck!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
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...
Tara0 -
It's not working for hertaraHK 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
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,
Dora0 -
Dora look for Zaltrap on google!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
hugs!0 -
Pepe - now or later?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 -- 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....
Tara0 -
Hi pepe,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!
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,
Dora0 -
Hi Tara ,don't need it for the moment, so something I'm keeptaraHK 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
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!0 -
While,admittedly, this is from US,nevertheless,its a start,Lena: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
http://clinicaltrials.gov/ct2/show/NCT015386800 -
Hi Lena, for the moment as is not approved yet is only availablecoloCan said:While,admittedly, this is from US,nevertheless,its a start,Lena:
http://clinicaltrials.gov/ct2/show/NCT01538680
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.0 -
Hi Pepepepebcn 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.
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
Lena0 -
Hi Lena I have been speaking to my onc today.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
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!0
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