Is there any body already using REGORANFENIB?

pepebcn
pepebcn Member Posts: 6,331 Member
in Colorectal Cancer #1
Just want to know about side effects and if any body already has their first blood tests or Scans!.
Thank you all!

Comments

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #2
    Are your doctors planning to
    Are your doctors planning to give that drug to you? That drug may be given to Rick if the Avastin stops working. We should get scan results back tomorrow on that very topic.
    Best wishes , Cynthia
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #3
    Dear Pepe
    Here is what I have found reported in US regarding side effects:

    Grade 3 side effects associated with regorafenib included fatigue (15%), anorexia (4.4%), diarrhea (8.2%), handfoot skin reaction (16.6%), hypertension (7.4%), weight loss (0.4%), and voice changes (0.2%).

    “These side effects were consistent with observations from previous clinical trials. Dose adjustments were helpful in managing side effects,” Grothey commented.

    From site: http://www.onclive.com/publications/obtn/2012/March-2012/Regorafenib-Potential-Treatment-for-Metastatic-Colorectal-Cancer-Failing-Standard-Treatment-Options

    I don't think it is available in US except on clinical trial, but approval could be soon.

    Hugs,

    Marie who loves kitties
  • steved
    steved Member Posts: 834 Member
    #4
    Not licensed in UK
    It looks like it was fast tracked to license in the states but isn;'t available here except within a trial. No knowledge of it myself.

    'Regorafenib was granted Fast Track designation by the U.S. FDA for the treatment of patients with metastatic and/or unresectable GIST whose disease has progressed despite at least imatinib and sunitinib as prior treatments, as well as for the treatment of patients with mCRC who have progressed after approved standard therapies. Fast Track is a process designed to facilitate the development, and expedite the review of drugs to treat serious diseases and fill an unmet medical need.'


    steve
  • taraHK
    taraHK Member Posts: 1,952 Member
    #5
    Looking into
    I am looking into this drug currently. It is not available in Hong Kong except in (traditional) clinical trial. 50:50 chance of getting the drug is not attractive to me at this stage. The mother of one of our other members was on Regoranfenib in Hong Kong but it was a different type of trial where she was guaranteed getting that drug. I'll let her share experiences if she wishes (she has previously).

    My understanding is that the drug is now "universal access". What this means (if I understand correctly) is that it is available in a number of cities/countries but only at certain partipating centres. You are guaranteed getting the drug (Regoranfenib) but it is still a clinical trial -- now looking more extensively at safety issues, etc.

    I am hoping the universal access extends to HK soon (yes, we are part of the universe!) -- otherwise I may have to travel back to the States -- or move in with you, Pepe! -- just kidding.

    Steved -- I believe there is one participating centre in the UK, in Manchester.

    http://clinicaltrials.gov/ct2/show/study/NCT01538680?term=regorafenib+AND+expanded+access&rank=1&show_locs=Y#locn

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

    Looking into
    I am looking into this drug currently. It is not available in Hong Kong except in (traditional) clinical trial. 50:50 chance of getting the drug is not attractive to me at this stage. The mother of one of our other members was on Regoranfenib in Hong Kong but it was a different type of trial where she was guaranteed getting that drug. I'll let her share experiences if she wishes (she has previously).

    My understanding is that the drug is now "universal access". What this means (if I understand correctly) is that it is available in a number of cities/countries but only at certain partipating centres. You are guaranteed getting the drug (Regoranfenib) but it is still a clinical trial -- now looking more extensively at safety issues, etc.

    I am hoping the universal access extends to HK soon (yes, we are part of the universe!) -- otherwise I may have to travel back to the States -- or move in with you, Pepe! -- just kidding.

    Steved -- I believe there is one participating centre in the UK, in Manchester.

    http://clinicaltrials.gov/ct2/show/study/NCT01538680?term=regorafenib+AND+expanded+access&rank=1&show_locs=Y#locn

    Tara

    Yes Tara l know about Dora,s mum but as she said it didn't
    work for her I would like to hear some other testimonials .There are many SS hospitals here involved in the trial ( seems Spain and Italy are leading the trial here in Europe), and they ofer it with no restrictions ( only the trial ones), so I could have it but my onc thinks is still a bit early to try it since other options are available,so for the moment he put me on avastin with xeloda, and will monitor it very close, if it does not work we will try to zip it with ciberknife.But I still can choose so.....that's why I would like to hear about some positive results!
    Hugs to every body here and thanks for you answers.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #7
    pepebcn said:

    Yes Tara l know about Dora,s mum but as she said it didn't
    work for her I would like to hear some other testimonials .There are many SS hospitals here involved in the trial ( seems Spain and Italy are leading the trial here in Europe), and they ofer it with no restrictions ( only the trial ones), so I could have it but my onc thinks is still a bit early to try it since other options are available,so for the moment he put me on avastin with xeloda, and will monitor it very close, if it does not work we will try to zip it with ciberknife.But I still can choose so.....that's why I would like to hear about some positive results!
    Hugs to every body here and thanks for you answers.

    Pepe, just wondering why you
    Pepe, just wondering why you would want to take this drug over cyberknife?? I don't know anything about cyberknife, either. Since you've asked about this drug...I've been looking at available clinial trials, as I have a scan coming up end of July and you never know (yep I'm already worrying about it)....but has anyone heard of this drug or anything regarding side effects etc. That pipeline includes BBI608, a first-in-class cancer stemness inhibitor currently in the preparatory stage for Phase III trials for colorectal cancer in North America, as well as Phase Ib trials and Phase II trials for multiple solid tumors. BBI608 is actually what brought DSP and BBI together, as in March 2011, DSP signed an exclusive product option license agreement with BBI on the rights of development and commercialization of BBI608 in Japan for all indications of cancer
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #8
    Pepe
    Pepe,

    **** and I were just talking about this today. So glad you brought it up. ****'s CEA continues to climb little bit by little bit. It is now at his all time high of 4.0. The problem is the trend is up. So.... he may be looking at a change in his drugs. Probably Erbitux first but he is very interested in following Regoranfenib.

    I hope people continue to post with any type of info.
    Thinking of you.

    Aloha,
    Kathleen
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #9
    Kathleen808 said:

    Pepe
    Pepe,

    **** and I were just talking about this today. So glad you brought it up. ****'s CEA continues to climb little bit by little bit. It is now at his all time high of 4.0. The problem is the trend is up. So.... he may be looking at a change in his drugs. Probably Erbitux first but he is very interested in following Regoranfenib.

    I hope people continue to post with any type of info.
    Thinking of you.

    Aloha,
    Kathleen

    Hi leena Just looking for different options beside ciberknife
    or as mop up chemo, also as my problems is with lymph nodes ,surgery or ciberknife are just a short /mid time solution as all the lymphatic system use to be affected ,so we are talking about something similar to blood , you can't operate blood as you can't operate lymphatic liquid so you have to kill the bug via Chemotherapy.That's the reason.Hugs Leena.
    Kathleen , all I can tell you is that here is available in the social security as trial open to anybody who needs it just by complying the trial conditions.
    But not very much info yet about results or secondary effects ! .
    That's why for the moment I will be in avastin/ xeloda a few moths while doing ciberknife and later we will see!
    Hugs to both!
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #10
    pepebcn said:

    Hi leena Just looking for different options beside ciberknife
    or as mop up chemo, also as my problems is with lymph nodes ,surgery or ciberknife are just a short /mid time solution as all the lymphatic system use to be affected ,so we are talking about something similar to blood , you can't operate blood as you can't operate lymphatic liquid so you have to kill the bug via Chemotherapy.That's the reason.Hugs Leena.
    Kathleen , all I can tell you is that here is available in the social security as trial open to anybody who needs it just by complying the trial conditions.
    But not very much info yet about results or secondary effects ! .
    That's why for the moment I will be in avastin/ xeloda a few moths while doing ciberknife and later we will see!
    Hugs to both!

    There is other intereting drug which also is tested in Barcelona
    open to every body as well, Aflibercept, the leading team is in Hospital Vall de Hebron , Dr.Tabernero. I will suggest to take a look to this new chemo , it's a regeneron drug and seems will be approved by august!
    Hugs!
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #11
    Kathleen808 said:

    Pepe
    Pepe,

    **** and I were just talking about this today. So glad you brought it up. ****'s CEA continues to climb little bit by little bit. It is now at his all time high of 4.0. The problem is the trend is up. So.... he may be looking at a change in his drugs. Probably Erbitux first but he is very interested in following Regoranfenib.

    I hope people continue to post with any type of info.
    Thinking of you.

    Aloha,
    Kathleen

    Pepe and Kathleen
    Here is an article from May of this year. Approval has been requested of FDA and in Europe.

    http://pharmabiz.com/ArticleDetails.aspx?aid=69189&sid=2
  • Bear23
    Bear23 Member Posts: 84
    #12
    Lovekitties said:

    Pepe and Kathleen
    Here is an article from May of this year. Approval has been requested of FDA and in Europe.

    http://pharmabiz.com/ArticleDetails.aspx?aid=69189&sid=2

    I also am interested in
    I also am interested in anyone who might have started this.
    I have a scan on Monday and talk with the doctor on Friday. I have tried all traditional drugs except Mitimyocyn. After me pushing, and the doc going to the ASCO conference, I think I have him convinced if I have growth. I have been following it quite closely.

    Pepe, I am on Xeloda , Oxi and Avastin right now for the lung tumors. Have done Folfox, Avastin & 5Fu, Irinotecan and Vectibix.

    Valerie
  • mukamom
    mukamom Member Posts: 402
    #13
    Bear23 said:

    I also am interested in
    I also am interested in anyone who might have started this.
    I have a scan on Monday and talk with the doctor on Friday. I have tried all traditional drugs except Mitimyocyn. After me pushing, and the doc going to the ASCO conference, I think I have him convinced if I have growth. I have been following it quite closely.

    Pepe, I am on Xeloda , Oxi and Avastin right now for the lung tumors. Have done Folfox, Avastin & 5Fu, Irinotecan and Vectibix.

    Valerie

    thanks Pepe
    for bringing up this drug that I had no idea exsisted. I will be sure to bring it up to the onc we are going to see on Monday.(second opinion). He is very active in clinical trials, and it is good that I am now more well informed of options that may be available, if needed.

    ((Hugs))

    Angela
  • rogina2336
    rogina2336 Member Posts: 188
    #14
    My husband and I were at the
    My husband and I were at the Oncologist on Friday and they had stated that Regorinifab should be available to all in the United States in November. The worst side effect they stated was the hand and foot redness, peeling and possible blistering of the skin. It is an option for my husband as soon as it's available he has been through 26 rounds of chemo since diagnosed Nov. 2010 and is really sick of it all.
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #15
    rogina2336 said:

    My husband and I were at the
    My husband and I were at the Oncologist on Friday and they had stated that Regorinifab should be available to all in the United States in November. The worst side effect they stated was the hand and foot redness, peeling and possible blistering of the skin. It is an option for my husband as soon as it's available he has been through 26 rounds of chemo since diagnosed Nov. 2010 and is really sick of it all.

    Don't forget about another new drug that must be approved by
    August ,Aflibercept, by Regeneron ! don't know why people does not speak about it ,results are similar or better than Regoranfenib!.
    Hugs mates!

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