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affguy

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      affguy
      Participant
      My dad went with a schedule of 8 am and 8 pm, not eating breakfast before 9 am, or dinner after 6 pm. This worked well for him for the 16 months he was on the combo, but he did not enjoy the side effects of deviating in any way that cut into the 1H/2H seperation from meals and thus only made that mistake a few times.
      affguy
      Participant
      My dad went with a schedule of 8 am and 8 pm, not eating breakfast before 9 am, or dinner after 6 pm. This worked well for him for the 16 months he was on the combo, but he did not enjoy the side effects of deviating in any way that cut into the 1H/2H seperation from meals and thus only made that mistake a few times.
      affguy
      Participant
      My dad went with a schedule of 8 am and 8 pm, not eating breakfast before 9 am, or dinner after 6 pm. This worked well for him for the 16 months he was on the combo, but he did not enjoy the side effects of deviating in any way that cut into the 1H/2H seperation from meals and thus only made that mistake a few times.
      affguy
      Participant
      My dad tried interferon in 2012 using a somewhat different schedule than most. Rather than one month of high dose followed by eleven months of low dose, he did three months of high dose separated by two month intervals of no dosexception during which he felt well enough to work a part-time job delivering cars for a dealership. During his “on” months, he was incapable of much of anything, sleeping 14+ hours per day and feeling awful during his waking hours. He managed to ride 200 miles with my mom at one point, but was thenot too sick to leave his hotel room, thereby forcing him to miss my wedding. His experience was so unpleasant that he swore off any future treatment that could produce similar side effects.

      He moved to Stage 4 about 6 months after completing his interferon regimen and started BRAF treatment which worked for about 14 months, but is now in hospice care.

      affguy
      Participant
      My dad tried interferon in 2012 using a somewhat different schedule than most. Rather than one month of high dose followed by eleven months of low dose, he did three months of high dose separated by two month intervals of no dosexception during which he felt well enough to work a part-time job delivering cars for a dealership. During his “on” months, he was incapable of much of anything, sleeping 14+ hours per day and feeling awful during his waking hours. He managed to ride 200 miles with my mom at one point, but was thenot too sick to leave his hotel room, thereby forcing him to miss my wedding. His experience was so unpleasant that he swore off any future treatment that could produce similar side effects.

      He moved to Stage 4 about 6 months after completing his interferon regimen and started BRAF treatment which worked for about 14 months, but is now in hospice care.

      affguy
      Participant
      My dad tried interferon in 2012 using a somewhat different schedule than most. Rather than one month of high dose followed by eleven months of low dose, he did three months of high dose separated by two month intervals of no dosexception during which he felt well enough to work a part-time job delivering cars for a dealership. During his “on” months, he was incapable of much of anything, sleeping 14+ hours per day and feeling awful during his waking hours. He managed to ride 200 miles with my mom at one point, but was thenot too sick to leave his hotel room, thereby forcing him to miss my wedding. His experience was so unpleasant that he swore off any future treatment that could produce similar side effects.

      He moved to Stage 4 about 6 months after completing his interferon regimen and started BRAF treatment which worked for about 14 months, but is now in hospice care.

      affguy
      Participant

      Yes, he would have some coffee and juice in that hour between dose and breakfast, just not food.

      affguy
      Participant

      Yes, he would have some coffee and juice in that hour between dose and breakfast, just not food.

      affguy
      Participant

      Yes, he would have some coffee and juice in that hour between dose and breakfast, just not food.

      affguy
      Participant

      A biopsy can differentiate between a primary and secondary tumor.  Initial diagnosis based on a metastatic tumor with no known primary is an uncommon but not unheard of occurrence, and there are several people on this site who got here by that route.  I'm not sure what they are irradiating if a single cutaneous tumor is all they've identified, unless it's some sort of preventative measure.  Perhaps excision plus irradiation is a normal approach when the initial diagnosis confirms active metastasis.

      affguy
      Participant

      A biopsy can differentiate between a primary and secondary tumor.  Initial diagnosis based on a metastatic tumor with no known primary is an uncommon but not unheard of occurrence, and there are several people on this site who got here by that route.  I'm not sure what they are irradiating if a single cutaneous tumor is all they've identified, unless it's some sort of preventative measure.  Perhaps excision plus irradiation is a normal approach when the initial diagnosis confirms active metastasis.

      affguy
      Participant

      A biopsy can differentiate between a primary and secondary tumor.  Initial diagnosis based on a metastatic tumor with no known primary is an uncommon but not unheard of occurrence, and there are several people on this site who got here by that route.  I'm not sure what they are irradiating if a single cutaneous tumor is all they've identified, unless it's some sort of preventative measure.  Perhaps excision plus irradiation is a normal approach when the initial diagnosis confirms active metastasis.

      affguy
      Participant

      The studies you're referring to generally refer to actual observations in real patients, i.e. not just conjecture.  For another reference, http://www.dermnetnz.org/treatments/dabrafenib.html states "Dabrafenib has proven activity in patients with BRAF V600E and BRAF V600K metastatic melanoma, including those with brain metastases."  As for crossing the blood-brain barrier, intrathecal injection can be one way around that, e.g. with IL-2 http://jco.ascopubs.org/content/32/33/e111.full. I'm unaware of any studies using intrathecal BRAF inhibitors, but given the systemic mechanism by which such drugs work, spinal injection seems likely to be both impracticable and unnecessary.

      affguy
      Participant

      The studies you're referring to generally refer to actual observations in real patients, i.e. not just conjecture.  For another reference, http://www.dermnetnz.org/treatments/dabrafenib.html states "Dabrafenib has proven activity in patients with BRAF V600E and BRAF V600K metastatic melanoma, including those with brain metastases."  As for crossing the blood-brain barrier, intrathecal injection can be one way around that, e.g. with IL-2 http://jco.ascopubs.org/content/32/33/e111.full. I'm unaware of any studies using intrathecal BRAF inhibitors, but given the systemic mechanism by which such drugs work, spinal injection seems likely to be both impracticable and unnecessary.

      affguy
      Participant

      The studies you're referring to generally refer to actual observations in real patients, i.e. not just conjecture.  For another reference, http://www.dermnetnz.org/treatments/dabrafenib.html states "Dabrafenib has proven activity in patients with BRAF V600E and BRAF V600K metastatic melanoma, including those with brain metastases."  As for crossing the blood-brain barrier, intrathecal injection can be one way around that, e.g. with IL-2 http://jco.ascopubs.org/content/32/33/e111.full. I'm unaware of any studies using intrathecal BRAF inhibitors, but given the systemic mechanism by which such drugs work, spinal injection seems likely to be both impracticable and unnecessary.

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