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10mg ipi trial
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10mg ipi trial

› Forums › General Melanoma Community › 10mg ipi trial

  • Post
    • October 24, 2011 at 8:08 pm
    Sherb
    Participant
      I am new to the board, but have been checking it out for a few months. My mom (66 years old) is Stage 4 with 4.7 cm tibia tumor plus liver tumor along with iliac node tumors. She just completed her 4th ipi (10mg) infusion on Oct 5th . She has had signifigantmuscle weakness that has affected both upper and lower extremities. This makes everything just so much more difficult due to her tibia fracture due to tumor inlet. Anyone else have this happen? I am moving her to Atlanta to live with us because she can no longer care for herself.

      I am new to the board, but have been checking it out for a few months. My mom (66 years old) is Stage 4 with 4.7 cm tibia tumor plus liver tumor along with iliac node tumors. She just completed her 4th ipi (10mg) infusion on Oct 5th . She has had signifigantmuscle weakness that has affected both upper and lower extremities. This makes everything just so much more difficult due to her tibia fracture due to tumor inlet. Anyone else have this happen? I am moving her to Atlanta to live with us because she can no longer care for herself. Anyone else out there have this extreme muscle weakness? Her side effects up until now have been manageable (grade 2 itch and rash), both sporadic and taken care of with benadryl. PS, she is in the midst of her scans and we get results Wednesday afternoon.

    Viewing 8 reply threads
    • Replies
        • October 25, 2011 at 12:13 am
        NYKaren
        Participant

          Hi Sherb,

          Best of luck on your mom's scans.  From what I read around here, response to ipi can take as long as six months.  People, myself included, say that side effects are a sign that her immune system was being stimulated to fight the ipi, so the itch/rash were good things!  Sorry, don't know anything about muscle weakness, hopefully someone else will chime in who does.

          all the best,

          karen

            • October 25, 2011 at 12:19 am
            NYKaren
            Participant

              Sorry, forgot to add that the very first thing an ipi patient should about any side-effect is CALL YOUR DOCTOR.  Especially in a clinical trial–they want to know every single thing–you're not bothering him/her, that's what being in a trial is for.

              • October 25, 2011 at 12:19 am
              NYKaren
              Participant

                Sorry, forgot to add that the very first thing an ipi patient should about any side-effect is CALL YOUR DOCTOR.  Especially in a clinical trial–they want to know every single thing–you're not bothering him/her, that's what being in a trial is for.

                • October 25, 2011 at 12:19 am
                NYKaren
                Participant

                  Sorry, forgot to add that the very first thing an ipi patient should about any side-effect is CALL YOUR DOCTOR.  Especially in a clinical trial–they want to know every single thing–you're not bothering him/her, that's what being in a trial is for.

                • October 25, 2011 at 12:13 am
                NYKaren
                Participant

                  Hi Sherb,

                  Best of luck on your mom's scans.  From what I read around here, response to ipi can take as long as six months.  People, myself included, say that side effects are a sign that her immune system was being stimulated to fight the ipi, so the itch/rash were good things!  Sorry, don't know anything about muscle weakness, hopefully someone else will chime in who does.

                  all the best,

                  karen

                  • October 25, 2011 at 12:13 am
                  NYKaren
                  Participant

                    Hi Sherb,

                    Best of luck on your mom's scans.  From what I read around here, response to ipi can take as long as six months.  People, myself included, say that side effects are a sign that her immune system was being stimulated to fight the ipi, so the itch/rash were good things!  Sorry, don't know anything about muscle weakness, hopefully someone else will chime in who does.

                    all the best,

                    karen

                    • October 25, 2011 at 3:46 am
                    mclaus23
                    Participant

                      Hi!

                      My father completed his 4th ipi infusion 2 weeks ago and will have scan on 11/16.

                      I have not heard him complain of muscle weakness but he has noticed he has been very fatigued. He also had sweats and abdominal discomfort along with other side effects all of which have been said to be a positive response to the treatment.

                      Waiting game isn't easy!

                      I am praying for your mom!

                      She is lucky to have you

                       

                      Maggie

                        • October 25, 2011 at 3:48 am
                        mclaus23
                        Participant

                          Oh- rash too- he has had that as well

                          • October 25, 2011 at 3:48 am
                          mclaus23
                          Participant

                            Oh- rash too- he has had that as well

                            • October 25, 2011 at 3:48 am
                            mclaus23
                            Participant

                              Oh- rash too- he has had that as well

                            • October 25, 2011 at 3:46 am
                            mclaus23
                            Participant

                              Hi!

                              My father completed his 4th ipi infusion 2 weeks ago and will have scan on 11/16.

                              I have not heard him complain of muscle weakness but he has noticed he has been very fatigued. He also had sweats and abdominal discomfort along with other side effects all of which have been said to be a positive response to the treatment.

                              Waiting game isn't easy!

                              I am praying for your mom!

                              She is lucky to have you

                               

                              Maggie

                              • October 25, 2011 at 3:46 am
                              mclaus23
                              Participant

                                Hi!

                                My father completed his 4th ipi infusion 2 weeks ago and will have scan on 11/16.

                                I have not heard him complain of muscle weakness but he has noticed he has been very fatigued. He also had sweats and abdominal discomfort along with other side effects all of which have been said to be a positive response to the treatment.

                                Waiting game isn't easy!

                                I am praying for your mom!

                                She is lucky to have you

                                 

                                Maggie

                                • October 25, 2011 at 8:16 am
                                FormerCaregiver
                                Participant

                                  Welcome to our forum. Sorry to read about your mother's situation. Muscle weakness can be caused by a number of things that may or may not be related to melanoma. How is her general health? For example, is she eating ok or does she have problems with nausea? Does she spend much time resting or sleeping?

                                  I hope that ipi (Yervoy) works well for your mother. However, it would be wise to be aware that it is not a cure and results might be disappointing in patients who have a large tumour burden.

                                  Best wishes

                                  Frank from Australia

                                  • October 25, 2011 at 8:16 am
                                  FormerCaregiver
                                  Participant

                                    Welcome to our forum. Sorry to read about your mother's situation. Muscle weakness can be caused by a number of things that may or may not be related to melanoma. How is her general health? For example, is she eating ok or does she have problems with nausea? Does she spend much time resting or sleeping?

                                    I hope that ipi (Yervoy) works well for your mother. However, it would be wise to be aware that it is not a cure and results might be disappointing in patients who have a large tumour burden.

                                    Best wishes

                                    Frank from Australia

                                    • October 25, 2011 at 8:16 am
                                    FormerCaregiver
                                    Participant

                                      Welcome to our forum. Sorry to read about your mother's situation. Muscle weakness can be caused by a number of things that may or may not be related to melanoma. How is her general health? For example, is she eating ok or does she have problems with nausea? Does she spend much time resting or sleeping?

                                      I hope that ipi (Yervoy) works well for your mother. However, it would be wise to be aware that it is not a cure and results might be disappointing in patients who have a large tumour burden.

                                      Best wishes

                                      Frank from Australia

                                  Viewing 8 reply threads
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