Is there anybody on Regorafenib trial drug?

Rubyrose
Rubyrose Member Posts: 47
edited December 2012 in Colorectal Cancer #1

My husband has been on regorafenib since 5 September 2012. I did a previous post and there were only a couple of people on it which both had to come off for various reasons.  His last scans show that he has fluid in the abdomen and lungs which is causing his breathlessness. Anybody also know about that. He has mets to liver and abdomen. Hope you're all having a nice Christmas. Thanks.  Rubyrose

Comments

  • jain db
    jain db Member Posts: 8

    Dear Rubyrose,

     

    I have been reading your mails for a cole of days. My dad has progressed on all protocols of chemotherapy. We have procured Regarofenib from USA . He starts next week. Wanted to know all the problems you are having

     

    ritu

  • Rubyrose
    Rubyrose Member Posts: 47
    jain db said:

    Dear Rubyrose,

     

    I have been reading your mails for a cole of days. My dad has progressed on all protocols of chemotherapy. We have procured Regarofenib from USA . He starts next week. Wanted to know all the problems you are having

     

    ritu

    Not too many problems

    There haven't been too many problems, the main one is tiredness.  He's had occasional temperature of 38.5 but panadol always brought it down.  He's also had diarrhoea intermittently. He has an illeostomy. It is a fairly new drug originally with completed trials in America but there doesn't seem to be a lot known about it on this website.Good luck with your Dad. Hope all goes well. Regards Rubyrose

  • Vickilg
    Vickilg Member Posts: 281 Member
    Rubyrose said:

    Not too many problems

    There haven't been too many problems, the main one is tiredness.  He's had occasional temperature of 38.5 but panadol always brought it down.  He's also had diarrhoea intermittently. He has an illeostomy. It is a fairly new drug originally with completed trials in America but there doesn't seem to be a lot known about it on this website.Good luck with your Dad. Hope all goes well. Regards Rubyrose

    Is this the pill?

    Hi there... Is this the new pill form of chemotherapy?  I am not it if it is but the doctor said that it will most likely be an option for me in the future.   Wishing you both the best.

  • Rubyrose
    Rubyrose Member Posts: 47
    Vickilg said:

    Is this the pill?

    Hi there... Is this the new pill form of chemotherapy?  I am not it if it is but the doctor said that it will most likely be an option for me in the future.   Wishing you both the best.

    Yes it is in pill form

    My husband takes four pills every morning after a light breakfast for three weeks, then has one week off, so is a four week cycle.  The first few weeks he had blood tests every week, now has been put to monthly visits with the oncologist/blood tests.  We have been told this drug probably won't shrink the tumours but should stop them growing. When scans were compared ie 1/8/12 scans, treatment commenced 5/9/12, scans done 11/12/12. Tumours had increased slightly but taking into consideration he was off treatment from 1/8/12 to 5/9/12, tumours would have grown.  This means in fact the tumours probably haven't increased at all and the drug is doing it's job. For him to be eligible for this drug, he had to have exhausted all other chemos. Good luck with everything and email me if you need any more info. Regards Rubyrose

  • jain db
    jain db Member Posts: 8
    Rubyrose said:

    Yes it is in pill form

    My husband takes four pills every morning after a light breakfast for three weeks, then has one week off, so is a four week cycle.  The first few weeks he had blood tests every week, now has been put to monthly visits with the oncologist/blood tests.  We have been told this drug probably won't shrink the tumours but should stop them growing. When scans were compared ie 1/8/12 scans, treatment commenced 5/9/12, scans done 11/12/12. Tumours had increased slightly but taking into consideration he was off treatment from 1/8/12 to 5/9/12, tumours would have grown.  This means in fact the tumours probably haven't increased at all and the drug is doing it's job. For him to be eligible for this drug, he had to have exhausted all other chemos. Good luck with everything and email me if you need any more info. Regards Rubyrose

    Dear rubyrose , Did you

    Dear rubyrose , Did you husband has tumours in the liver also ? If not where else?

     

    reg

    ritu

  • Rubyrose
    Rubyrose Member Posts: 47
    jain db said:

    Dear rubyrose , Did you

    Dear rubyrose , Did you husband has tumours in the liver also ? If not where else?

     

    reg

    ritu

    yes he has tumours in liver

    He has bowel cancer with mets to liver and peritoneum. Inoperable. Regards rubyrose

  • janie1
    janie1 Member Posts: 753 Member
    Rubyrose said:

    yes he has tumours in liver

    He has bowel cancer with mets to liver and peritoneum. Inoperable. Regards rubyrose

    Hi Rubyrose

    It's good to hear the drug has been keeping things under control.  With so few people on it, there has been little info.

    Are his blood tests normal?  My oncologist thought that the bilirubin goes up almost from the first cycle, but again, there are few people on it since the trial, so there is still little data on it.

    Thanks....and wishing you both all the best.

  • Rubyrose
    Rubyrose Member Posts: 47
    janie1 said:

    Hi Rubyrose

    It's good to hear the drug has been keeping things under control.  With so few people on it, there has been little info.

    Are his blood tests normal?  My oncologist thought that the bilirubin goes up almost from the first cycle, but again, there are few people on it since the trial, so there is still little data on it.

    Thanks....and wishing you both all the best.

    Blood tests are not normal

    Hi Janie 1 - my husband's billirubin went up right from the start of taking regorifenib. It hovers around 45. If it goes higher than 62, he will have to stop taking the tablets. His last CEA was around 1768 but before it had gone up to 2,100 and was rising as he was on avastin which had stopped working.  Rubyrose 

  • jain db
    jain db Member Posts: 8
    Thanks for all the info

    Thanks for all the info Rubyrose

  • dianelynn41
    dianelynn41 Member Posts: 71
    jain db said:

    Thanks for all the info

    Thanks for all the info Rubyrose

    My husband just started his

    My husband just started his 2nd round of Stivarga. He has recurrent rectal cancer stage 4.  When he started this his tumor protruded out his rectum, he said it felt like he sat on a grapefruit.  The tumor is attached to the small intestine and has invaded his bladder and he has a spot on one lung.  One week after he started this I noticed a huge difference in the tumor by the end of the 1st round the tumor wasn't protruding out anymore and a big bump that was under his testicles was gone.  His onc called it a miracle.

    He's due for a ct scan in a few weeks so we"ll know how much it really shrunk.  The side effects he's having is really bad fatigue and loss of appetite.  But we're so excited about the progress so far.

    His blood has been good so far.

     

    Good Luck everyone.

    Diane & Roby

  • jain db
    jain db Member Posts: 8

    My husband just started his

    My husband just started his 2nd round of Stivarga. He has recurrent rectal cancer stage 4.  When he started this his tumor protruded out his rectum, he said it felt like he sat on a grapefruit.  The tumor is attached to the small intestine and has invaded his bladder and he has a spot on one lung.  One week after he started this I noticed a huge difference in the tumor by the end of the 1st round the tumor wasn't protruding out anymore and a big bump that was under his testicles was gone.  His onc called it a miracle.

    He's due for a ct scan in a few weeks so we"ll know how much it really shrunk.  The side effects he's having is really bad fatigue and loss of appetite.  But we're so excited about the progress so far.

    His blood has been good so far.

     

    Good Luck everyone.

    Diane & Roby

    drowsiness

    Dear Rubyrose,

    My father just started Regarofenib yesterday and he is very drowsy from first day. Is this normal ?

     

    reg

    ritu

  • Rubyrose
    Rubyrose Member Posts: 47
    jain db said:

    drowsiness

    Dear Rubyrose,

    My father just started Regarofenib yesterday and he is very drowsy from first day. Is this normal ?

     

    reg

    ritu

    Yes, was very tired right from first taking it

    Tiredness has been the main side effect. Rubyrose

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
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