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Zelboraf and increased lymphedema?
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Zelboraf and increased lymphedema?

› Forums › General Melanoma Community › Zelboraf and increased lymphedema?

  • Post
    • April 5, 2013 at 10:46 pm
    joy_
    Participant

      Hi everyone!  My husband has been on Zelboraf (960mg twice a day) for almost 3 weeks now.  He has the "usual" side effects of body rash, fatique and a little hair loss, but one that he is having that we haven't seen discussed anywhere is lymphedema.  He had a radical LND (groin) almost 3 years ago and has never had much of a problem with lymphedema in that leg.  It has been very mild over the past few years, but since he has been on Zelboraf it is a problem and very uncomfortable.  Compression stocking doesn't even seem to help.

      Hi everyone!  My husband has been on Zelboraf (960mg twice a day) for almost 3 weeks now.  He has the "usual" side effects of body rash, fatique and a little hair loss, but one that he is having that we haven't seen discussed anywhere is lymphedema.  He had a radical LND (groin) almost 3 years ago and has never had much of a problem with lymphedema in that leg.  It has been very mild over the past few years, but since he has been on Zelboraf it is a problem and very uncomfortable.  Compression stocking doesn't even seem to help.  Any thoughts on why this is with Zelboraf?  Just curious if anyone has any insight or experience with that.

      He only has 3 more weeks to go on Z and then on to Ipi as part of a trial so I feel certain this is temporary, and we will be trading these side effects for a new ones soon….

      Thanks for any feedback and keep up the good fight!!!

    Viewing 2 reply threads
    • Replies
        • April 5, 2013 at 10:52 pm
        awillett1991
        Participant
          Has he been properly fitted by a specialist and gotten an Rx compression stocking?I have dealt with this for years and although Zel didn’t make it worse, Ipi did. Often once you get it, you’re stuck with it. There are also massaging exercises and therapists who can help with this.
            • April 6, 2013 at 12:10 am
            joy_
            Participant

              He has been fitted with an Rx stocking.  Maybe he should look into some therapist who can help.  I just don't understand why all of a sudden this is a problem on Zel.  Do you know why Ipi made it worse for you?  Thank you!

              • April 6, 2013 at 2:10 am
              awillett1991
              Participant
                I don’t know why Ipi made it worse. I remember being told that lymphadema can crop up anytime, even years after surgery. I already had it anyway. I deal with it and go on! Also be mindful the stockings do wear out, pain is my indicator. The lymphadema therapist worked wonders for me at its worst during my radiation. Ask your Dr. For a referral.
                • April 6, 2013 at 6:31 pm
                joy_
                Participant

                  Thanks for your reply.  I hope my post didn't sound like we were complaining.  I am just the type of person that has to inquire about anything that I can't find the answer …  smiley

                  • April 7, 2013 at 12:35 am
                  Linny
                  Participant

                    Lymphedema can show up years after a surgery. Your husband needs to see a physical therapist who specializes in lymphedema to get that swelling under control ASAP. He needs to be measured and fitted for a leg compression garment by a certified professional. The National Lymphedema Network ( http://www.lymphnet.org/ ) is a great resource.

                    • April 7, 2013 at 12:35 am
                    Linny
                    Participant

                      Lymphedema can show up years after a surgery. Your husband needs to see a physical therapist who specializes in lymphedema to get that swelling under control ASAP. He needs to be measured and fitted for a leg compression garment by a certified professional. The National Lymphedema Network ( http://www.lymphnet.org/ ) is a great resource.

                      • April 7, 2013 at 12:35 am
                      Linny
                      Participant

                        Lymphedema can show up years after a surgery. Your husband needs to see a physical therapist who specializes in lymphedema to get that swelling under control ASAP. He needs to be measured and fitted for a leg compression garment by a certified professional. The National Lymphedema Network ( http://www.lymphnet.org/ ) is a great resource.

                        • April 6, 2013 at 6:31 pm
                        joy_
                        Participant

                          Thanks for your reply.  I hope my post didn't sound like we were complaining.  I am just the type of person that has to inquire about anything that I can't find the answer …  smiley

                          • April 6, 2013 at 6:31 pm
                          joy_
                          Participant

                            Thanks for your reply.  I hope my post didn't sound like we were complaining.  I am just the type of person that has to inquire about anything that I can't find the answer …  smiley

                            • April 6, 2013 at 2:10 am
                            awillett1991
                            Participant
                              I don’t know why Ipi made it worse. I remember being told that lymphadema can crop up anytime, even years after surgery. I already had it anyway. I deal with it and go on! Also be mindful the stockings do wear out, pain is my indicator. The lymphadema therapist worked wonders for me at its worst during my radiation. Ask your Dr. For a referral.
                              • April 6, 2013 at 2:10 am
                              awillett1991
                              Participant
                                I don’t know why Ipi made it worse. I remember being told that lymphadema can crop up anytime, even years after surgery. I already had it anyway. I deal with it and go on! Also be mindful the stockings do wear out, pain is my indicator. The lymphadema therapist worked wonders for me at its worst during my radiation. Ask your Dr. For a referral.
                                • April 6, 2013 at 12:10 am
                                joy_
                                Participant

                                  He has been fitted with an Rx stocking.  Maybe he should look into some therapist who can help.  I just don't understand why all of a sudden this is a problem on Zel.  Do you know why Ipi made it worse for you?  Thank you!

                                  • April 6, 2013 at 12:10 am
                                  joy_
                                  Participant

                                    He has been fitted with an Rx stocking.  Maybe he should look into some therapist who can help.  I just don't understand why all of a sudden this is a problem on Zel.  Do you know why Ipi made it worse for you?  Thank you!

                                  • April 5, 2013 at 10:52 pm
                                  awillett1991
                                  Participant
                                    Has he been properly fitted by a specialist and gotten an Rx compression stocking?I have dealt with this for years and although Zel didn’t make it worse, Ipi did. Often once you get it, you’re stuck with it. There are also massaging exercises and therapists who can help with this.
                                    • April 5, 2013 at 10:52 pm
                                    awillett1991
                                    Participant
                                      Has he been properly fitted by a specialist and gotten an Rx compression stocking?I have dealt with this for years and although Zel didn’t make it worse, Ipi did. Often once you get it, you’re stuck with it. There are also massaging exercises and therapists who can help with this.
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