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Going to do the Wound Vac “acti vac” and feeling ok since the Ipi 4 days ago

Forums General Melanoma Community Going to do the Wound Vac “acti vac” and feeling ok since the Ipi 4 days ago

  • Post
    Vermont_Donna
    Participant

      Hi everyone,

        The leg infection continues, got on augmentin twice a day for 14 days, then once a day for "months". I asked my surgeon yesterday about doing a wound vac and he said YES!! So it was ordered, I'll have it Tuesdy and will go down to DHMC for the nurses to put it on and for the doc to decide to what level he wants the wound brought to (I dont know the terminology here but the acti vac people said he will decide how long it is to stay on and check me weekly or so). I am so happy as 6 months with open wounds feels like enough!!

      Hi everyone,

        The leg infection continues, got on augmentin twice a day for 14 days, then once a day for "months". I asked my surgeon yesterday about doing a wound vac and he said YES!! So it was ordered, I'll have it Tuesdy and will go down to DHMC for the nurses to put it on and for the doc to decide to what level he wants the wound brought to (I dont know the terminology here but the acti vac people said he will decide how long it is to stay on and check me weekly or so). I am so happy as 6 months with open wounds feels like enough!!

       And regarding leg amputation….NOT going to do that….I just feel that 1. my melanoma will return elsewhere, the last new spot is pretty high up on my thigh, and 2, the wound from the amputation isnt going to heal and THAT will kill me. heck, I cant get two small spots on my lower leg to heal. A stump wound to heal? Not going to happen in my estimation. So thats where I stand.

      Thank you everone who responded and who may still respond. it definitely helps to read all of this!

      Vermont_Donna

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    • Replies
        MichaelFL
        Participant

           Hi Donna,

          I am sorry you are having to make some difficult decisions as of late.

          I hope the wound vac works well for you. I know it has worked well for others.

          I do not understand the rationale behind the leg amputation either, since the mel is already in the blood stream. There was someone named Mike J here who did a leg amputation almost two years ago and the melanoma spread past the stump area anyway. Since you say you have difficulty healing as well, having the amputation may compromise your immune system further too.

          Good luck with everything.

          Michael

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            Vermont_Donna
            Participant

              Thanks Michael. I am not sure about this particular oncology surgeon and me anymore. He did not tell me about hyberbaric oxygen treatment OR the wound vac. I also saw him a month ago and showed him where the second surgical site, where the were stitches were in 3.2 weeks and healed great, was beginning to split open (theres a term for this, I think its wound dehisence sp?…..where a stitched wound, once the stitches are removed, splits open) and when I asked him what I could do he said there was NOTHING I could do! He didnt ask to see me back or anything!!!! So I am not sure what is going on. I think surgically he is very skilled. Maybe he is really stressed these days. He also told me he had never seen a patient have her wounds do this before. WHAT?????!!!!!! Anyways, I need to have an honest discussion about whether he wants to be my doctor given all this, or maybe I should speak to my oncologist first. I am thinking that I should do that first. Anyways, thanks for listening!!

              Vermont_Donna

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              Vermont_Donna
              Participant

                Thanks Michael. I am not sure about this particular oncology surgeon and me anymore. He did not tell me about hyberbaric oxygen treatment OR the wound vac. I also saw him a month ago and showed him where the second surgical site, where the were stitches were in 3.2 weeks and healed great, was beginning to split open (theres a term for this, I think its wound dehisence sp?…..where a stitched wound, once the stitches are removed, splits open) and when I asked him what I could do he said there was NOTHING I could do! He didnt ask to see me back or anything!!!! So I am not sure what is going on. I think surgically he is very skilled. Maybe he is really stressed these days. He also told me he had never seen a patient have her wounds do this before. WHAT?????!!!!!! Anyways, I need to have an honest discussion about whether he wants to be my doctor given all this, or maybe I should speak to my oncologist first. I am thinking that I should do that first. Anyways, thanks for listening!!

                Vermont_Donna

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              MichaelFL
              Participant

                 Hi Donna,

                I am sorry you are having to make some difficult decisions as of late.

                I hope the wound vac works well for you. I know it has worked well for others.

                I do not understand the rationale behind the leg amputation either, since the mel is already in the blood stream. There was someone named Mike J here who did a leg amputation almost two years ago and the melanoma spread past the stump area anyway. Since you say you have difficulty healing as well, having the amputation may compromise your immune system further too.

                Good luck with everything.

                Michael

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                King
                Participant

                  Donna,

                   

                  It sounds like you have made some great decisions.  Believe in them and believe in Ipi.  Hoping there are better days ahead and soon for you!

                   

                  Stay Strong
                  King

                  Stage IV  7/05 Liver mets

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                    Vermont_Donna
                    Participant

                      Thanks, King! I found a couple of more sub-q's this morning in checking over my leg….felt them the other day and wasnt sure but today I am pretty sure thats what they are….up above my knee but the tissue there is kind of fibrous from some knee surgery several years ago (a wider excision and then 6 years ago a patella tendon tear repair). I am a little depressed today but also feeling very optimistic that Ipi is going to be the treatment that my melanoma responds too!

                      I appreciate all your great support and for always writing to me!

                      Vermont_Donna

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                      Vermont_Donna
                      Participant

                        Thanks, King! I found a couple of more sub-q's this morning in checking over my leg….felt them the other day and wasnt sure but today I am pretty sure thats what they are….up above my knee but the tissue there is kind of fibrous from some knee surgery several years ago (a wider excision and then 6 years ago a patella tendon tear repair). I am a little depressed today but also feeling very optimistic that Ipi is going to be the treatment that my melanoma responds too!

                        I appreciate all your great support and for always writing to me!

                        Vermont_Donna

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                      King
                      Participant

                        Donna,

                         

                        It sounds like you have made some great decisions.  Believe in them and believe in Ipi.  Hoping there are better days ahead and soon for you!

                         

                        Stay Strong
                        King

                        Stage IV  7/05 Liver mets

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                        Sharyn
                        Participant

                          Hi Donna,

                          YAY!!! Finally you're getting the VAC! It will work wonders for you, I'm sure of it!

                          YAY!!! You've abandoned the amputation option! Whew!!! I'm really glad of that one!

                          YAY!!! You're doing well so far on ipi!!! Hope it continues!

                          YAY!!! Best post I've read from you in a nice while. keep 'em coming!

                          Hugs

                          Sharyn, Stage IV

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                          Sharyn
                          Participant

                            Hi Donna,

                            YAY!!! Finally you're getting the VAC! It will work wonders for you, I'm sure of it!

                            YAY!!! You've abandoned the amputation option! Whew!!! I'm really glad of that one!

                            YAY!!! You're doing well so far on ipi!!! Hope it continues!

                            YAY!!! Best post I've read from you in a nice while. keep 'em coming!

                            Hugs

                            Sharyn, Stage IV

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                              Laurie from maine
                              Participant

                                Hi Donna,

                                I am glad that you are not doing amputation and now have a plan that you feel is the right path for you!

                                Thinking of you during this stressful time.  Strong prayers coming your way.

                                laurie from maine

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                                Laurie from maine
                                Participant

                                  Hi Donna,

                                  I am glad that you are not doing amputation and now have a plan that you feel is the right path for you!

                                  Thinking of you during this stressful time.  Strong prayers coming your way.

                                  laurie from maine

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                                ValinMtl
                                Participant

                                  So relieved that you are not going the amputation route..made no sense.  Great idea to talk to your oncologist about decisions to be made..he has you on the right track with ipilimumab..praying it works for you. 

                                  Donna, I believe you also have lymphedema in the leg like me…I do use the support hose  if I'm going out anywhere but the best relief by far when my leg is really hurting…wrapping..my physiotherapist who works closely with the lymphedema foundation showed my hubby how to do it and now he is a pro, does it every 2nd day.  My lymphedema is pretty nasty, my surgeon admitted he was pretty drastic in depth and lymph nodes (I have no problem with that) and with 'wrapping' I don't feel the constant pressure, I almost feel 'human'.  Keep it in mind once your wound is healed. Perhaps, once melanoma is under control my leg might feel well enough to use the stockings more often.   Val xx

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                                  ValinMtl
                                  Participant

                                    So relieved that you are not going the amputation route..made no sense.  Great idea to talk to your oncologist about decisions to be made..he has you on the right track with ipilimumab..praying it works for you. 

                                    Donna, I believe you also have lymphedema in the leg like me…I do use the support hose  if I'm going out anywhere but the best relief by far when my leg is really hurting…wrapping..my physiotherapist who works closely with the lymphedema foundation showed my hubby how to do it and now he is a pro, does it every 2nd day.  My lymphedema is pretty nasty, my surgeon admitted he was pretty drastic in depth and lymph nodes (I have no problem with that) and with 'wrapping' I don't feel the constant pressure, I almost feel 'human'.  Keep it in mind once your wound is healed. Perhaps, once melanoma is under control my leg might feel well enough to use the stockings more often.   Val xx

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                                    ValinMtl
                                    Participant

                                      So relieved that you are not going the amputation route..made no sense.  Great idea to talk to your oncologist about decisions to be made..he has you on the right track with ipilimumab..praying it works for you. 

                                      Donna, I believe you also have lymphedema in the leg like me…I do use the support hose  if I'm going out anywhere but the best relief by far when my leg is really hurting…wrapping..my physiotherapist who works closely with the lymphedema foundation showed my hubby how to do it and now he is a pro, does it every 2nd day.  My lymphedema is pretty nasty, my surgeon admitted he was pretty drastic in depth and lymph nodes (I have no problem with that) and with 'wrapping' I don't feel the constant pressure, I almost feel 'human'.  Keep it in mind once your wound is healed. Perhaps, once melanoma is under control my leg might feel well enough to use the stockings more often.   Val xx

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                                      ValinMtl
                                      Participant

                                        So relieved that you are not going the amputation route..made no sense.  Great idea to talk to your oncologist about decisions to be made..he has you on the right track with ipilimumab..praying it works for you. 

                                        Donna, I believe you also have lymphedema in the leg like me…I do use the support hose  if I'm going out anywhere but the best relief by far when my leg is really hurting…wrapping..my physiotherapist who works closely with the lymphedema foundation showed my hubby how to do it and now he is a pro, does it every 2nd day.  My lymphedema is pretty nasty, my surgeon admitted he was pretty drastic in depth and lymph nodes (I have no problem with that) and with 'wrapping' I don't feel the constant pressure, I almost feel 'human'.  Keep it in mind once your wound is healed. Perhaps, once melanoma is under control my leg might feel well enough to use the stockings more often.   Val xx

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