starting regorafenib (Stivarga) - any tips?

serenity101
serenity101 Member Posts: 82
in Colorectal Cancer #1

Had progression on FOLFOX/Avastin (growth of liver mets after a period where it was shrinking the them a lot) and irinotecan/Erbitux (new liver met after slight shrinkage of the other ones). Oncologist offered up return to 5FU + Avastin (had reaction to oxaliplatin), phase 1 clinical trial, or regorafenib as options. I plan to start regorafenib on Monday,  Anyone have any helpful tips?

Comments

  • Goldie1
    Goldie1 Member Posts: 264 Member
    #2
    Stivarga

    My husband Patrick started Stivarga (regorafenib) last November.  He just began his 4th cycle and he has a appointment this Monday with his oncologist.  Most likely, the onc will send Pat for a CT scan at this point to see if the Stivarga is working or not. 

    When Pat started Stivarga last November, about 5 days in, he felt like he had the flu.  His body felt sore, stomach upset, shakey, very tired but no fever.  Took him to the ER and decision was made to take him off Stivarga for a few days.  When Pat started taking it again, his body seemed to handle it much better.  He is on blood pressure meds because Stivarga can and did raise his blood pressure.  Everyday, we rub lotion on his feet and hands because of skin peeling. He does have continued neuropathy with his feet.  He has had a loss of appetite, but tries to eat smaller more frequent meals.  Also, Pat did have hoarseness at the beginning of treatment but that seems to have passed.  Wound healing is another issue.  Pat is recovering from an infection and it takes a while for the healing process.  

    Right now, Pat's main issue while on Stivarga is fatigue and occasional dizziness.

    I am sorry to be such a downer but everyone is different and hopefully you will not have to deal with all these side effects.

    Wishing you all the best while on Stivarga, 

    Ellen

  • serenity101
    serenity101 Member Posts: 82
    #3
    Goldie1 said:

    Stivarga

    My husband Patrick started Stivarga (regorafenib) last November.  He just began his 4th cycle and he has a appointment this Monday with his oncologist.  Most likely, the onc will send Pat for a CT scan at this point to see if the Stivarga is working or not. 

    When Pat started Stivarga last November, about 5 days in, he felt like he had the flu.  His body felt sore, stomach upset, shakey, very tired but no fever.  Took him to the ER and decision was made to take him off Stivarga for a few days.  When Pat started taking it again, his body seemed to handle it much better.  He is on blood pressure meds because Stivarga can and did raise his blood pressure.  Everyday, we rub lotion on his feet and hands because of skin peeling. He does have continued neuropathy with his feet.  He has had a loss of appetite, but tries to eat smaller more frequent meals.  Also, Pat did have hoarseness at the beginning of treatment but that seems to have passed.  Wound healing is another issue.  Pat is recovering from an infection and it takes a while for the healing process.  

    Right now, Pat's main issue while on Stivarga is fatigue and occasional dizziness.

    I am sorry to be such a downer but everyone is different and hopefully you will not have to deal with all these side effects.

    Wishing you all the best while on Stivarga, 

    Ellen

    Stivarga

    Hi Ellen,

    Thanks for the information. It's helpful to hear from someone who has "been there, done that."

    It seems like Stivarga has all of the side effects of every other cancer drug, and then some.  You have to wonder if some evil scientists sat around trying to figure out how many unpleasant side effects that could pack into one pill.

    Have you found a lotion that works pretty well? One sample that came with my first prescription was Udderly Smooth extra care cream, and since I have already used that for skin cracking from Erbitux I figured that's what I would use if no one suggests something else.

    I'm sorry you guys have had to deal with so many yucky side effects. I hope his CT shows great improvement to make it seem worthwhile.

    Serenity

     

  • Goldie1
    Goldie1 Member Posts: 264 Member
    #4
    serenity101 said:

    Stivarga

    Hi Ellen,

    Thanks for the information. It's helpful to hear from someone who has "been there, done that."

    It seems like Stivarga has all of the side effects of every other cancer drug, and then some.  You have to wonder if some evil scientists sat around trying to figure out how many unpleasant side effects that could pack into one pill.

    Have you found a lotion that works pretty well? One sample that came with my first prescription was Udderly Smooth extra care cream, and since I have already used that for skin cracking from Erbitux I figured that's what I would use if no one suggests something else.

    I'm sorry you guys have had to deal with so many yucky side effects. I hope his CT shows great improvement to make it seem worthwhile.

    Serenity

     

    You are so right!

    The side effects continue, even in pill form!  Pat told me one day that it felt like he was walking on hot coals.  He does take Neurontin for the neuropathy & recently started on Fentanyl patches for the pain.  

    Yes, the nurse recommended the Udderly Smooth.  It has helped a lot and even I started using it.  Pat was also told to try to apply it 4 times a day for the best results. Pat went through the Erbitux rash too, that really caused him some difficult skin issues.

    Please post and let us know how things go for you on the Stivarga and wishing you all the best!  And many thanks too.

  • Lisa2012
    Lisa2012 Member Posts: 142
    #5
    serenity101 said:

    Stivarga

    Hi Ellen,

    Thanks for the information. It's helpful to hear from someone who has "been there, done that."

    It seems like Stivarga has all of the side effects of every other cancer drug, and then some.  You have to wonder if some evil scientists sat around trying to figure out how many unpleasant side effects that could pack into one pill.

    Have you found a lotion that works pretty well? One sample that came with my first prescription was Udderly Smooth extra care cream, and since I have already used that for skin cracking from Erbitux I figured that's what I would use if no one suggests something else.

    I'm sorry you guys have had to deal with so many yucky side effects. I hope his CT shows great improvement to make it seem worthwhile.

    Serenity

     

    Lotion

    Serenity,

    We seem to be on a similar path.   I am currently treating with erbitux.  I really have found that a lotion called Vanicream works well.  It has no dye, no lanolin, no fragrance, no parables and no formaldehyde.    I guess you must have started treatment this past week.   I hope all is going well.

     

    Lisa

  • serenity101
    serenity101 Member Posts: 82
    #6
    Lisa2012 said:

    Lotion

    Serenity,

    We seem to be on a similar path.   I am currently treating with erbitux.  I really have found that a lotion called Vanicream works well.  It has no dye, no lanolin, no fragrance, no parables and no formaldehyde.    I guess you must have started treatment this past week.   I hope all is going well.

     

    Lisa

    Thanks

    Thanks for the suggestion Lisa. I have now been on Staivarga for a week, and so far I have not had any major problems.

  • Goldie1
    Goldie1 Member Posts: 264 Member
    #7
    serenity101 said:

    Thanks

    Thanks for the suggestion Lisa. I have now been on Staivarga for a week, and so far I have not had any major problems.

    Please let us know

    how things go while you are taking the Stivarga.  Glad your first week went well!  Pat is going for a CT scan in 2 weeks after 4 months of taking Stivarga.  We are really hoping for some positive results.  

     

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