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Wife Starting Ipi

Forums Caregiver Community Wife Starting Ipi

  • Post
    mzeigler
    Participant

      Hi,  I am a caregiver to my wife who started with acral melanoma in her right thumb in 2003.  She had the top of her thumb removed

      and was fine until 2007.  Then there was a reoccurance happened on the thumb and the whole thumb was removed.  All scans were

      negative until 2009 when she showed a small lesion on her lung.  It was removed surgically and melanoma was confirmed.  Next

      scans were clean until Aug of 2010.  She had 2 hot spots on her liver and one on the bone of her left arm.  After 2 rounds of il-2 and

      Hi,  I am a caregiver to my wife who started with acral melanoma in her right thumb in 2003.  She had the top of her thumb removed

      and was fine until 2007.  Then there was a reoccurance happened on the thumb and the whole thumb was removed.  All scans were

      negative until 2009 when she showed a small lesion on her lung.  It was removed surgically and melanoma was confirmed.  Next

      scans were clean until Aug of 2010.  She had 2 hot spots on her liver and one on the bone of her left arm.  After 2 rounds of il-2 and

      no positive results, we got into an ipi trial in Bethleham, Pa.  It's been a week since her first infusion,  with some fatigue.  My

      question is during the past week,  she has noticed some aching in her upper right arm which wasn't happening before the ipi started.

      Is this related to the ipi drug?  It seems to have happened very suddenly with the starting of the treatments. 

      She is 53 years old, an elementary principal.  We have been married 31 years and have 2 sons.  This is my first post.

      Mike

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    • Replies
        Fen
        Participant

          Mike – I am sorry you had to join this board, but there is lots of good information here.  You might want to do a search using "ipi".  I know there are an increasing number of people on the board who are either in a trial or getting compassionate use, so re-post in a couple days if you don't get a response right away.

          Fen

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          Fen
          Participant

            Mike – I am sorry you had to join this board, but there is lots of good information here.  You might want to do a search using "ipi".  I know there are an increasing number of people on the board who are either in a trial or getting compassionate use, so re-post in a couple days if you don't get a response right away.

            Fen

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            lhaley
            Participant

              Mike,

              I'm so sorry that you've had to join us. I haven't used ippi but hopefully others that have will comment soon.  Has your wife been tested for the B-raf mutation or C-Kit?

              Please keep us informed on how she does with ippi.

              Linda

              (retired elementary teacher – 34 years) Stage IV since 06, NED 3 months, scans tomorrow!!

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              lhaley
              Participant

                Mike,

                I'm so sorry that you've had to join us. I haven't used ippi but hopefully others that have will comment soon.  Has your wife been tested for the B-raf mutation or C-Kit?

                Please keep us informed on how she does with ippi.

                Linda

                (retired elementary teacher – 34 years) Stage IV since 06, NED 3 months, scans tomorrow!!

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                vickirs
                Participant

                  Mike,

                  I started ipi 2 weeks ago tomorrow.  I have also had fatigue and now I am starting itching all over with rashes popping up in several places.  I am supposed to call my coordinater with every symtom.  Maybe that is who you should talk to.  Good luck with all of this, I know how hard and stressful this is.

                  Vicki

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                  vickirs
                  Participant

                    Mike,

                    I started ipi 2 weeks ago tomorrow.  I have also had fatigue and now I am starting itching all over with rashes popping up in several places.  I am supposed to call my coordinater with every symtom.  Maybe that is who you should talk to.  Good luck with all of this, I know how hard and stressful this is.

                    Vicki

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                    Rocco
                    Participant
                      Clinical Trial ParticipantNED

                      Hi Mike,

                      Welcome to the boards.

                      Some people on this board have noted aches & pains with ipi.  Personally I didn't  get this symptom during my course of ipi, but everyone is different.  As the other poster noted, if your wife hasn't done so already, she should let her Oncologist or other contact (trial coordinator/nurse) know about this.  Perhaps it's ipi related, perhaps it isn't.

                       You've tapped into a great resource here for asking questions.  Best wishes that ipi will help your wife.

                      Rocco, Stage IV since Aug 2005

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                      Rocco
                      Participant
                        Clinical Trial ParticipantNED

                        Hi Mike,

                        Welcome to the boards.

                        Some people on this board have noted aches & pains with ipi.  Personally I didn't  get this symptom during my course of ipi, but everyone is different.  As the other poster noted, if your wife hasn't done so already, she should let her Oncologist or other contact (trial coordinator/nurse) know about this.  Perhaps it's ipi related, perhaps it isn't.

                         You've tapped into a great resource here for asking questions.  Best wishes that ipi will help your wife.

                        Rocco, Stage IV since Aug 2005

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                        ValinMtl
                        Participant

                          Hi Mike…Sorry to hear that your wife has joined our group.  I have just completed round 4 of the ipi trial now a 12-week break.  No serious side effects but I am more fatigued now than say a few rounds ago.  I am also 'aching' but not serious enough to keep me down, could be ipi or simply my age (60).  I just discovered a growth on the left side of groin area (my problem has always been my right leg) which I am hoping is a lymph node reaction to the ipi.  Waiting for CT scan to be reported on.  But as the others have said, I will speak to my clinical trial nurse/oncologist perhaps that would be your wife's best bet…they are looking for any health issues on this trial.   Best wishes, Val

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                          ValinMtl
                          Participant

                            Hi Mike…Sorry to hear that your wife has joined our group.  I have just completed round 4 of the ipi trial now a 12-week break.  No serious side effects but I am more fatigued now than say a few rounds ago.  I am also 'aching' but not serious enough to keep me down, could be ipi or simply my age (60).  I just discovered a growth on the left side of groin area (my problem has always been my right leg) which I am hoping is a lymph node reaction to the ipi.  Waiting for CT scan to be reported on.  But as the others have said, I will speak to my clinical trial nurse/oncologist perhaps that would be your wife's best bet…they are looking for any health issues on this trial.   Best wishes, Val

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                            BethA in VA
                            Participant

                              Mike, I just want to say you have come to a great place with lots of informed people with loads of experience.  I wish your wife good results with her treatment.  (I don't have experience with that.)  She is lucky to have you by her side, taking care of and supporting her.  Positive thoughts and prayers for both of you.   Beth 3/B 

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                              BethA in VA
                              Participant

                                Mike, I just want to say you have come to a great place with lots of informed people with loads of experience.  I wish your wife good results with her treatment.  (I don't have experience with that.)  She is lucky to have you by her side, taking care of and supporting her.  Positive thoughts and prayers for both of you.   Beth 3/B 

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                                Jim M.
                                Participant

                                  Hi Mike,

                                   

                                   I just read the list of Ipi side effects I got as part of the description of the clinical trial I was on. Included on the list are: Arthralgia (pain in one or more joints) and inflammation of the joints. The list doesn't say anything specific about aching in the upper arm. When I was on the trial my medical team had me keep a journal to write all the sympotms I was experiencing. They informed me that they didn't know all the possible side effects of Ipi so the journal helped them to see other effects they previously weren't aware of.

                                   I had aches in both sides of my stomach, chest pain and I developed plantar facsiitis (heel pain) shortly after one infusion. The team couldn't tell me if it (the heel pain) was from Ipi or if I did it myself. Maybe the list of side effects for Ipi are more extensive now and you are able review the list. My opinion is her pain is from Ipi since It had such a sudden onset. Communicate all her symptoms to her medical team.

                                   Hope this helps and God Bless,

                                   Jim M.

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                                  Jim M.
                                  Participant

                                    Hi Mike,

                                     

                                     I just read the list of Ipi side effects I got as part of the description of the clinical trial I was on. Included on the list are: Arthralgia (pain in one or more joints) and inflammation of the joints. The list doesn't say anything specific about aching in the upper arm. When I was on the trial my medical team had me keep a journal to write all the sympotms I was experiencing. They informed me that they didn't know all the possible side effects of Ipi so the journal helped them to see other effects they previously weren't aware of.

                                     I had aches in both sides of my stomach, chest pain and I developed plantar facsiitis (heel pain) shortly after one infusion. The team couldn't tell me if it (the heel pain) was from Ipi or if I did it myself. Maybe the list of side effects for Ipi are more extensive now and you are able review the list. My opinion is her pain is from Ipi since It had such a sudden onset. Communicate all her symptoms to her medical team.

                                     Hope this helps and God Bless,

                                     Jim M.

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                                    mzeigler
                                    Participant

                                      Thanks for all your kind replies.  It helps to know you are not alone and others can relate to what we are going through.  The doctors decided that since it started as an acral melanoma, it is very probable that she doesn't  apply for the B-RAF treatment.  The ache has subsided and she actually feels better the last day or so.  Ibuprofen seems to help.  The fatigue is still there.  We will discuss with our nurse co-ordinator when we talk next.

                                       

                                      Mike

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                                      mzeigler
                                      Participant

                                        Thanks for all your kind replies.  It helps to know you are not alone and others can relate to what we are going through.  The doctors decided that since it started as an acral melanoma, it is very probable that she doesn't  apply for the B-RAF treatment.  The ache has subsided and she actually feels better the last day or so.  Ibuprofen seems to help.  The fatigue is still there.  We will discuss with our nurse co-ordinator when we talk next.

                                         

                                        Mike

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