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BRAF + urgent help needed Dabrafenib + Trametinib through feeding tube?
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BRAF + urgent help needed Dabrafenib + Trametinib through feeding tube?

› Forums › General Melanoma Community › BRAF + urgent help needed Dabrafenib + Trametinib through feeding tube?

  • Post
    • October 18, 2016 at 8:03 pm
    Sandra_story
    Participant

      Hello Everyone,

      Thank you to everyone who posted with information and advice before .

      We got the results about a week ago from our oncologist in that my mom was BRAF+.

      We were told based on his medical opinion that she should be put on Dabrafenib + Trametinib (Pills) 

      He knew at this time my mom was barely able to swallow water and could not swallow food. He was unsure weather we could use the feeding tube to administer the treatment but was going to try and find out.

      We never heard back and made many calls. 

      After reading about that here on the forum and as much research as possible about this treatment. We thought at the speed my mom tumors are growing especially the one behind her upper GI tract that is also pushing on her lung and heart. that this would help things shrink the fastest. 

      So after a week of calls and getting this treatment finally ordered, after back and forth with a few pharmacist trying to figure out if we can use the feeding tube for this. We still have no answer other then a call saying that one of the pills says it cant be crushed.

      We see our oncologist tomorrow. 

      Here is the question. Anyone know any story or information on this treatment for a patient that can't swallow and has sever dysphagia.

      Any help or info would be greatly appreciated. I feel like time is crucial and cant wait weeks more to start a treatment.

      Thank you

      Chris

    Viewing 11 reply threads
    • Replies
        • October 18, 2016 at 9:23 pm
        debwray
        Participant

          Hi,

          Sorry they have not got back to you. That really sucks.

          this clinical trial https://clinicaltrials.gov/ct2/show/NCT01902173 refers to  the drugs and says those with feeding tubes can be included,, provided the drugs do not need crushing… so in theory there may be a way but can't find out how…

          All the guidance seem to say make the tablets into a powder if using tubes but that seems banned ?

          Struggling to find anything direct but this is the novartis contact page- maybe ask the drug company ??

          https://www.pharma.us.novartis.com/utils/contact/info/emaili

          Deb

           

          • October 18, 2016 at 9:23 pm
          debwray
          Participant

            Hi,

            Sorry they have not got back to you. That really sucks.

            this clinical trial https://clinicaltrials.gov/ct2/show/NCT01902173 refers to  the drugs and says those with feeding tubes can be included,, provided the drugs do not need crushing… so in theory there may be a way but can't find out how…

            All the guidance seem to say make the tablets into a powder if using tubes but that seems banned ?

            Struggling to find anything direct but this is the novartis contact page- maybe ask the drug company ??

            https://www.pharma.us.novartis.com/utils/contact/info/emaili

            Deb

             

              • October 19, 2016 at 1:02 am
              Sandra_story
              Participant

                Thank you for the info

                 

                I contacted the drug company and was not supprized by there answer which is they can only recommend the way in which the drug profile states. They do not want any unnesacary liability.

                So we are still stuck

                • October 19, 2016 at 1:02 am
                Sandra_story
                Participant

                  Thank you for the info

                   

                  I contacted the drug company and was not supprized by there answer which is they can only recommend the way in which the drug profile states. They do not want any unnesacary liability.

                  So we are still stuck

                  • December 16, 2019 at 4:39 pm
                  Donna C
                  Participant
                    I realize this was years ago but i’m at a standstill now………Looking for any help with giving Tafinlar and Mekinist Targeted drugs through a G-tube feeding tube. We are aware that they are supposed to be given on an empty stomach as well as not crushed. Pharmacist at hospital and doctor are aware that we are crushing and giving with a tablespoon of applesauce through the tube. My concern is that they aren’t effective like this OR harmful? Did you ever find any answers? I can’t?!
                    • October 19, 2016 at 1:02 am
                    Sandra_story
                    Participant

                      Thank you for the info

                       

                      I contacted the drug company and was not supprized by there answer which is they can only recommend the way in which the drug profile states. They do not want any unnesacary liability.

                      So we are still stuck

                    • October 18, 2016 at 9:23 pm
                    debwray
                    Participant

                      Hi,

                      Sorry they have not got back to you. That really sucks.

                      this clinical trial https://clinicaltrials.gov/ct2/show/NCT01902173 refers to  the drugs and says those with feeding tubes can be included,, provided the drugs do not need crushing… so in theory there may be a way but can't find out how…

                      All the guidance seem to say make the tablets into a powder if using tubes but that seems banned ?

                      Struggling to find anything direct but this is the novartis contact page- maybe ask the drug company ??

                      https://www.pharma.us.novartis.com/utils/contact/info/emaili

                      Deb

                       

                      • October 19, 2016 at 1:23 pm
                      Patina
                      Participant
                        Have you tried a compounding pharmacy that has a oncology focus?

                        I would get a second opinion to see if there are other options too.

                        • October 19, 2016 at 1:23 pm
                        Patina
                        Participant
                          Have you tried a compounding pharmacy that has a oncology focus?

                          I would get a second opinion to see if there are other options too.

                          • October 19, 2016 at 1:23 pm
                          Patina
                          Participant
                            Have you tried a compounding pharmacy that has a oncology focus?

                            I would get a second opinion to see if there are other options too.

                            • October 19, 2016 at 4:08 pm
                            marta010
                            Participant

                              Hi Chris – my husband was on a feeding tube for 9 months while taking Zelboraf.  We crushed his pills and administered through his feeding tube.  His oncologist acknowledged that this was "off label" but didn't see any downside.  Sending thoughts and prayers.

                              Ann

                              • October 19, 2016 at 4:08 pm
                              marta010
                              Participant

                                Hi Chris – my husband was on a feeding tube for 9 months while taking Zelboraf.  We crushed his pills and administered through his feeding tube.  His oncologist acknowledged that this was "off label" but didn't see any downside.  Sending thoughts and prayers.

                                Ann

                                • October 19, 2016 at 4:08 pm
                                marta010
                                Participant

                                  Hi Chris – my husband was on a feeding tube for 9 months while taking Zelboraf.  We crushed his pills and administered through his feeding tube.  His oncologist acknowledged that this was "off label" but didn't see any downside.  Sending thoughts and prayers.

                                  Ann

                                  • October 19, 2016 at 4:40 pm
                                  Mat
                                  Participant

                                    I have no practical experience with the feeding tube issue, but I will say this (having been on BRAF-MEK for 18 mos and having started with a heavy tumor burden)–your mom will know whether it is working within days, not weeks.  Like 3-5 days.  So risk/reward, there is probably little downside in trying, particularly since it sounds like there is a heavy tumor burden and few or no other options.

                                    • October 19, 2016 at 4:40 pm
                                    Mat
                                    Participant

                                      I have no practical experience with the feeding tube issue, but I will say this (having been on BRAF-MEK for 18 mos and having started with a heavy tumor burden)–your mom will know whether it is working within days, not weeks.  Like 3-5 days.  So risk/reward, there is probably little downside in trying, particularly since it sounds like there is a heavy tumor burden and few or no other options.

                                      • October 19, 2016 at 4:40 pm
                                      Mat
                                      Participant

                                        I have no practical experience with the feeding tube issue, but I will say this (having been on BRAF-MEK for 18 mos and having started with a heavy tumor burden)–your mom will know whether it is working within days, not weeks.  Like 3-5 days.  So risk/reward, there is probably little downside in trying, particularly since it sounds like there is a heavy tumor burden and few or no other options.

                                    Viewing 11 reply threads
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