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zbudimir

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      zbudimir
      Participant

      Thanks Arthur.  

      Unfortunately, there is not much time as the liver is giving out.  Ipi is the last resort.  Tafinlar and mekinist have slowed progression, but not stopped it.  Since this is outside the trial, the doctor said she has to say officially to stop the tafinlar and mekinist combo today because there is not much research out there yet on the trio.  But, she said she can't control what we do at home (implying to continue).  Since the liver is so bad, stopping the meds completely might be very risky.

      How long does it take to see results with Ipi?

      I don't know what to do, to continue with the tafinlar and mekinist while getting Ipi or stop.  Does anyone have any experience with this and/or advice?

      Thanks.

      zbudimir
      Participant

      Thanks Arthur.  

      Unfortunately, there is not much time as the liver is giving out.  Ipi is the last resort.  Tafinlar and mekinist have slowed progression, but not stopped it.  Since this is outside the trial, the doctor said she has to say officially to stop the tafinlar and mekinist combo today because there is not much research out there yet on the trio.  But, she said she can't control what we do at home (implying to continue).  Since the liver is so bad, stopping the meds completely might be very risky.

      How long does it take to see results with Ipi?

      I don't know what to do, to continue with the tafinlar and mekinist while getting Ipi or stop.  Does anyone have any experience with this and/or advice?

      Thanks.

      zbudimir
      Participant

      Thanks Arthur.  

      Unfortunately, there is not much time as the liver is giving out.  Ipi is the last resort.  Tafinlar and mekinist have slowed progression, but not stopped it.  Since this is outside the trial, the doctor said she has to say officially to stop the tafinlar and mekinist combo today because there is not much research out there yet on the trio.  But, she said she can't control what we do at home (implying to continue).  Since the liver is so bad, stopping the meds completely might be very risky.

      How long does it take to see results with Ipi?

      I don't know what to do, to continue with the tafinlar and mekinist while getting Ipi or stop.  Does anyone have any experience with this and/or advice?

      Thanks.

      zbudimir
      Participant

      Thank you for your help.

      zbudimir
      Participant

      Thank you for your help.

      zbudimir
      Participant

      Thank you for your help.

      zbudimir
      Participant

      Could you please tell me what exactly you are referring to – there are 200 posts by Jonathan?

      Also, the doctor told me that she can't put my dad on immunotherapy while to the combo – is that not true?

       

       

       

       

       

      zbudimir
      Participant

      Could you please tell me what exactly you are referring to – there are 200 posts by Jonathan?

      Also, the doctor told me that she can't put my dad on immunotherapy while to the combo – is that not true?

       

       

       

       

       

      zbudimir
      Participant

      Could you please tell me what exactly you are referring to – there are 200 posts by Jonathan?

      Also, the doctor told me that she can't put my dad on immunotherapy while to the combo – is that not true?

       

       

       

       

       

      zbudimir
      Participant

      Pow, thanks for responding and let me try again.

      My dad was diagnosed on 5/2012, Stage IV.  He had surgery on 6/29/2012 to remove the lymph node in groin area.  Cancer mets in the spleen.  He started Zelboraf on 8/24/2012.

      In October 2013, he started feeling nauseous and had pain in the abdomen.  Doctor said don't worry no cancer, scans are clean.

      About 2 weeks later…

      1st trip to the emergency room in October 2013 – Got IV. Stopped taking Zelboraf. Scan showed something on the liver. Doctor said take antibiotics, not to worry, no cancer, it's probably just a cyst.

      2nd trip, a week later – scan showed cancer all over liver and abdomen. IV. Continue taking antibiotics.

      3rd trip, another week later – IV, sent home. Called the doctor, same message, don't worry, we'll start him on something else.

      On the next day, 11/5/2013, I took him to Yale. Doctor said he has few days left due to no treatment and admitted him.  I argued with them and got him the MEK + TAF combo that night.

      11/5/2013 he started taking the MEK + TAF combo. His blood results showed improvement after 2 days and he was released.

      About 2 weeks later, his results were great, as I mentioned above.

      Another 2 weeks later, yesterday, results were worse than the day he was admitted.

      The doctor said she can't say whether or not the combo is not working becuase she doesn't know. We have to wait for another blood test in 2 more weeks.

      My dad feels good, he is upbeat and no pain at all.

      Now, my questions are:

      1. Has anyone experienced the same results after taking the combo? In other words, given that he feels so good, could the results be a fluke and the combo is really working?

      2. Does anyone have any other recommendation if in fact the combo isn't working? The doctor told me that there are no other options but chemo which will not do much for him.

      Thanks!

       

       

      zbudimir
      Participant

      Pow, thanks for responding and let me try again.

      My dad was diagnosed on 5/2012, Stage IV.  He had surgery on 6/29/2012 to remove the lymph node in groin area.  Cancer mets in the spleen.  He started Zelboraf on 8/24/2012.

      In October 2013, he started feeling nauseous and had pain in the abdomen.  Doctor said don't worry no cancer, scans are clean.

      About 2 weeks later…

      1st trip to the emergency room in October 2013 – Got IV. Stopped taking Zelboraf. Scan showed something on the liver. Doctor said take antibiotics, not to worry, no cancer, it's probably just a cyst.

      2nd trip, a week later – scan showed cancer all over liver and abdomen. IV. Continue taking antibiotics.

      3rd trip, another week later – IV, sent home. Called the doctor, same message, don't worry, we'll start him on something else.

      On the next day, 11/5/2013, I took him to Yale. Doctor said he has few days left due to no treatment and admitted him.  I argued with them and got him the MEK + TAF combo that night.

      11/5/2013 he started taking the MEK + TAF combo. His blood results showed improvement after 2 days and he was released.

      About 2 weeks later, his results were great, as I mentioned above.

      Another 2 weeks later, yesterday, results were worse than the day he was admitted.

      The doctor said she can't say whether or not the combo is not working becuase she doesn't know. We have to wait for another blood test in 2 more weeks.

      My dad feels good, he is upbeat and no pain at all.

      Now, my questions are:

      1. Has anyone experienced the same results after taking the combo? In other words, given that he feels so good, could the results be a fluke and the combo is really working?

      2. Does anyone have any other recommendation if in fact the combo isn't working? The doctor told me that there are no other options but chemo which will not do much for him.

      Thanks!

       

       

      zbudimir
      Participant

      Pow, thanks for responding and let me try again.

      My dad was diagnosed on 5/2012, Stage IV.  He had surgery on 6/29/2012 to remove the lymph node in groin area.  Cancer mets in the spleen.  He started Zelboraf on 8/24/2012.

      In October 2013, he started feeling nauseous and had pain in the abdomen.  Doctor said don't worry no cancer, scans are clean.

      About 2 weeks later…

      1st trip to the emergency room in October 2013 – Got IV. Stopped taking Zelboraf. Scan showed something on the liver. Doctor said take antibiotics, not to worry, no cancer, it's probably just a cyst.

      2nd trip, a week later – scan showed cancer all over liver and abdomen. IV. Continue taking antibiotics.

      3rd trip, another week later – IV, sent home. Called the doctor, same message, don't worry, we'll start him on something else.

      On the next day, 11/5/2013, I took him to Yale. Doctor said he has few days left due to no treatment and admitted him.  I argued with them and got him the MEK + TAF combo that night.

      11/5/2013 he started taking the MEK + TAF combo. His blood results showed improvement after 2 days and he was released.

      About 2 weeks later, his results were great, as I mentioned above.

      Another 2 weeks later, yesterday, results were worse than the day he was admitted.

      The doctor said she can't say whether or not the combo is not working becuase she doesn't know. We have to wait for another blood test in 2 more weeks.

      My dad feels good, he is upbeat and no pain at all.

      Now, my questions are:

      1. Has anyone experienced the same results after taking the combo? In other words, given that he feels so good, could the results be a fluke and the combo is really working?

      2. Does anyone have any other recommendation if in fact the combo isn't working? The doctor told me that there are no other options but chemo which will not do much for him.

      Thanks!

       

       

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