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IPI started. Leg amputation being discussed again if IPI fails.

Forums General Melanoma Community IPI started. Leg amputation being discussed again if IPI fails.

  • Post
    Vermont_Donna
    Participant

    Hi everyone,

    Hi everyone,

    I feel great so far. Had my first IPI infusion yesterday. I saw my oncology surgeon before seeing my melanoma oncologist because of the two open wounds and a possible infection.I pointed out my 5 new melanomas nodules. He agreed that they were melanoma, as they look like how mine usually present. He brought up the drastic option of an above the knee leg amputation. There is no known melanoma anywhere else in my body. We could get rid of the melanoma and the unhealed wounds in my leg by amputating. I told him, as I bawled, that I wasnt afraid of having my leg amputated and having to have a prosthesis. I am afraid of doing that AND melanoma rears its ugly head again, further up on my thigh, or elsewhere in my body (an organ, etc). OR I worry about my "stump" not healing, just like the two wider excisions have not healed. He said he heard what I was saying and agreed there were no guarantees on either concern. He just wanted to bring it up as an option that I SHOULD think about and consider. Oh and I had another celluilitis infection, which I had suspected and was the reason for my visit. I cried so much during the visit but finally pulled myself together as I had my oncology visit and then my IPI treatment. I managed to get, with my mom's support from 4L to 3K ,but felt like I couldnt get enough air. I knew I was on the verge of a panic attack. I made it to the oncology office and I knew my surgeon was calling my oncologist. As soon as he saw me as he was walking by he said "I'll get you into a room as soon as possble".The nurse came out right away and took me and my mom to a room. He came in right away and was GREAT! I said I was afraid I couldnt do the IPI because of the leg infection…he said dont worry, this is what we are going to do….we are going to call your leg issues a chronic indolent infectious process and put you on augmentin twice a day for two weeks then once a day for months. Then we can get you into the trial. I told him I needed som ativan as I was getting panicky and couldnt breathe well. He knew I was upset and he said as soon as we get you into the clinic rooms for IPI I will get you some ativan. That helped me calm down. He then spent the next 45 mintues talking to me and my mom about where leg amputation fit in as far as my clinical case of melanoma. He said he wanted to give IPI a chance and then try IL-2 and/or other chemos before we made that decision. He has had some patients who opted for amputation of their leg. He understood how bad I felt and how scared I am. He did his physical exam, agreed with all the nodules I found being melanoma and he found a spot behind my leg that I hadnt seen. We then went to the clinic rooms and the first thing they did was give me IV Ativan, then an augmentin pill to get started and then eventually the IPI arrived and that part went really well. The staff was great, everyone was perfect and so caring. I slept and dozed and mom said I asked the same questions twice a couple of times. Haha, that darn ativan. I got a prescription for lorazepam as I know there are just some days I need it. I know some people here have opted for leg amputation….can you write to me and please tell me more about your specific situations??

    Thanks so much for reading all of this (if you indeed made it this far!)

    Vermont_Donna

    stage 3a

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  • Replies
      killmel
      Participant

      Donna,

       

      I am so happy you posted. I thought about you all day yesterday.

      How are you feeling??? Any IPI side effects???

      Just focus on how  great it will be that IPI is working for you & you will not have to deal  with amputation.

      Keep the faith & your shin up!

      Hugs

      Mary

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      killmel
      Participant

      Donna,

       

      I am so happy you posted. I thought about you all day yesterday.

      How are you feeling??? Any IPI side effects???

      Just focus on how  great it will be that IPI is working for you & you will not have to deal  with amputation.

      Keep the faith & your shin up!

      Hugs

      Mary

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        Vermont_Donna
        Participant

        Thanks Mary! its so good to have the support of people on this MPIP board!!!!

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        Vermont_Donna
        Participant

        Thanks Mary! its so good to have the support of people on this MPIP board!!!!

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      Sharyn
      Participant

      Hi Donna,

      I'm so happy that you've finally started ipi. I just had my 4th infusion, and I've had no side effects worth mentioning. I'm hoping the same for you.

      Donna, I want you to think long and hard about this amputation business. When I was still IIIB and in the PV-10 trial, I asked Dr Agarwala about an amputation if PV-10 didn`t work. He said NEVER!!! He said that many doctors who are not melanoma specialists think that amputation is a viable option. But although the melanoma is presenting only in the leg, once in-transits appear, it is no longer a local disease per se, but microscopically systemic, even though there is not yet any evidence of it. He said that even if I had my leg amputated right to the hip, he could guarantee that a new tumour would appear in about 6 months. So I would have underrgone all that surgery, recovery, possible infection, not to mention a DRASTIC change in quality of life — all that for nothing! His advice was to do a systemic treatment, and with any luck it would kill off the microscopic systemic cells before they had a chance to do any damage. I googled `melanoma amputation`and found these sites for you. There are others.

      http://www.ncbi.nlm.nih.gov/pubmed/2472674

      http://www.springerlink.com/content/4xu7g03v171w6337/

      http://www.ncbi.nlm.nih.gov/pubmed/15642433

      Do read these, please, and seriously weight the pros and cons. Meanwhile, I`ll put all my prayers out there for ipi to work for you.

      Hugs

      Sharyn, Stage IV

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      Sharyn
      Participant

      Hi Donna,

      I'm so happy that you've finally started ipi. I just had my 4th infusion, and I've had no side effects worth mentioning. I'm hoping the same for you.

      Donna, I want you to think long and hard about this amputation business. When I was still IIIB and in the PV-10 trial, I asked Dr Agarwala about an amputation if PV-10 didn`t work. He said NEVER!!! He said that many doctors who are not melanoma specialists think that amputation is a viable option. But although the melanoma is presenting only in the leg, once in-transits appear, it is no longer a local disease per se, but microscopically systemic, even though there is not yet any evidence of it. He said that even if I had my leg amputated right to the hip, he could guarantee that a new tumour would appear in about 6 months. So I would have underrgone all that surgery, recovery, possible infection, not to mention a DRASTIC change in quality of life — all that for nothing! His advice was to do a systemic treatment, and with any luck it would kill off the microscopic systemic cells before they had a chance to do any damage. I googled `melanoma amputation`and found these sites for you. There are others.

      http://www.ncbi.nlm.nih.gov/pubmed/2472674

      http://www.springerlink.com/content/4xu7g03v171w6337/

      http://www.ncbi.nlm.nih.gov/pubmed/15642433

      Do read these, please, and seriously weight the pros and cons. Meanwhile, I`ll put all my prayers out there for ipi to work for you.

      Hugs

      Sharyn, Stage IV

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        ValinMtl
        Participant

        Donna, I know you are having a terrible time right now.  But I shiver when I hear the word amputation, it has been suggested to me by caring friends and family (hey, can't they cut off the melanoma by amputation).  It doesn't work that way and my surgeon discussed that with me.  When the melanoma re-appeared on the surface of my leg, 1st recurrence, he cut off a significant area of my skin – very deep – on my leg BUT it re-appeared not only in that area (thigh) but on the lower portion of my leg. 

        Please as Sharyn says, be careful with the discussion on amputation. I had serious infections on my leg which took many many months to heal..as the nurse who did most of the cleansing..she could see my bone. The vacuum Sharyn mentioned in previous e-mails is what solved my first recurrence healing, the second was solved by the wonderful 'head' of wound clinic at Royal Victoria Hospital in Montreal…Any possibility of your surgeon talking to him?  I can give you his name, believe me, I know the surgeons 'bow' down to him.

        I pray Ipi is the miracle you are looking for.  I've also had my 4th round…the only side effect I have noticed lately is fatigue but not 'extreme'.  Or as you oncologist suggests, if not IL-2.  Val xx

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        ValinMtl
        Participant

        Donna, I know you are having a terrible time right now.  But I shiver when I hear the word amputation, it has been suggested to me by caring friends and family (hey, can't they cut off the melanoma by amputation).  It doesn't work that way and my surgeon discussed that with me.  When the melanoma re-appeared on the surface of my leg, 1st recurrence, he cut off a significant area of my skin – very deep – on my leg BUT it re-appeared not only in that area (thigh) but on the lower portion of my leg. 

        Please as Sharyn says, be careful with the discussion on amputation. I had serious infections on my leg which took many many months to heal..as the nurse who did most of the cleansing..she could see my bone. The vacuum Sharyn mentioned in previous e-mails is what solved my first recurrence healing, the second was solved by the wonderful 'head' of wound clinic at Royal Victoria Hospital in Montreal…Any possibility of your surgeon talking to him?  I can give you his name, believe me, I know the surgeons 'bow' down to him.

        I pray Ipi is the miracle you are looking for.  I've also had my 4th round…the only side effect I have noticed lately is fatigue but not 'extreme'.  Or as you oncologist suggests, if not IL-2.  Val xx

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        jag
        Participant

        Sharyn, I just read your patnet.  I am amazed by the strength you have to deal with all of this.  

        God Bless
        John

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        jag
        Participant

        Sharyn, I just read your patnet.  I am amazed by the strength you have to deal with all of this.  

        God Bless
        John

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      Linda/Kentucky
      Participant

      My heart breaks for you as you deal with not only melanoma but the decision of amputation.  I agree with the previous poster.  Please think long and hard on the amputation issue.  She is right.  The melanoma could likely be floating around in your body and could appear later(hopefully not) so amputating your leg would only cause you more hardship.  Try the Ipi and other options and also get a second opinion from another melanoma oncologist/surgeon.  I pray you will find some peace during the next few days.  Know that we are all thinking and praying for you and your decisions.  Good luck with Ipi

       

      Linda/Kentucky

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      Linda/Kentucky
      Participant

      My heart breaks for you as you deal with not only melanoma but the decision of amputation.  I agree with the previous poster.  Please think long and hard on the amputation issue.  She is right.  The melanoma could likely be floating around in your body and could appear later(hopefully not) so amputating your leg would only cause you more hardship.  Try the Ipi and other options and also get a second opinion from another melanoma oncologist/surgeon.  I pray you will find some peace during the next few days.  Know that we are all thinking and praying for you and your decisions.  Good luck with Ipi

       

      Linda/Kentucky

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        Vermont_Donna
        Participant

        Hi everyone,

         Thanks so much for your thoughts! Thats what I have been thinking, that amputation is NOT the way to go as I do have in transit mets and I probably do have some floaters out there. I also worry that I would die from 1. the procedure itself, 2. in the post op period from infection and trauma to my body 3. in several months out from the procedure from the infection my stump would get from the end NEVER healing!!! Why should the stump heal? I have two wounds on my leg that are not healing very fast or at all now! So I would have to be in a very differetn place than I am right now.

        I am thinking positive that the IPI will work! I have had no side effects so far. Val, I do want the name of your doctor in Montreal…but how would I, an American, be able to access a Canadian doctor? I also am going to ask for some other referral doctors, Mass General, Dana Farber, 2nd opinions on the course of melanoma treatment and on my leg wounds. I am starting an all out project on researching how to heal my leg. Val, I hear you and Sharyn on the wound vac treatment. I googled that…it sounds promising, so I am going to look into that. I have called my surgeon to ask him about all these other treatments, NOT to talk about amputation.

        THANKS SO MUCH!!! Please anyone else with thougths, stories, what they did, PLEASE WRITE! This helps so much!

        Hugs,

        Vermont_Donna

        stage 3a

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        Vermont_Donna
        Participant

        Hi everyone,

         Thanks so much for your thoughts! Thats what I have been thinking, that amputation is NOT the way to go as I do have in transit mets and I probably do have some floaters out there. I also worry that I would die from 1. the procedure itself, 2. in the post op period from infection and trauma to my body 3. in several months out from the procedure from the infection my stump would get from the end NEVER healing!!! Why should the stump heal? I have two wounds on my leg that are not healing very fast or at all now! So I would have to be in a very differetn place than I am right now.

        I am thinking positive that the IPI will work! I have had no side effects so far. Val, I do want the name of your doctor in Montreal…but how would I, an American, be able to access a Canadian doctor? I also am going to ask for some other referral doctors, Mass General, Dana Farber, 2nd opinions on the course of melanoma treatment and on my leg wounds. I am starting an all out project on researching how to heal my leg. Val, I hear you and Sharyn on the wound vac treatment. I googled that…it sounds promising, so I am going to look into that. I have called my surgeon to ask him about all these other treatments, NOT to talk about amputation.

        THANKS SO MUCH!!! Please anyone else with thougths, stories, what they did, PLEASE WRITE! This helps so much!

        Hugs,

        Vermont_Donna

        stage 3a

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        jag
        Participant

        Donna, there are always backup plans for systemic treatment.  I do hope that IPI works for you from the start, but if not, there is biochemotherapy and Interleukin 2, both require hospitalization at a major melanoma center and are fairly miserable, but there are always other options.  Although living in Vermont requires travel to and from melanoma centers (I imagine,)in the long run it is worth it.   The other place to look for clinical trials would be http://www.clinicaltrials.gov.  

        Best

        John

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        jag
        Participant

        Donna, there are always backup plans for systemic treatment.  I do hope that IPI works for you from the start, but if not, there is biochemotherapy and Interleukin 2, both require hospitalization at a major melanoma center and are fairly miserable, but there are always other options.  Although living in Vermont requires travel to and from melanoma centers (I imagine,)in the long run it is worth it.   The other place to look for clinical trials would be http://www.clinicaltrials.gov.  

        Best

        John

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        jag
        Participant

        Here are some locations close to Vermont, for IPI

         

        Dartmouth Hitchcock Medical Center Recruiting
        Lebanon, New Hampshire, United States, 03756
        Contact: Marc Ernstoff, Site 044     603-650-5534        

         

        Dana-Farber Cancer Inst Recruiting
        Boston, Massachusetts, United States, 02115
        Contact: Fstephen Hodi, Site 040     617-632-5053        
        Beth Israel Deaconess Medical Center, Inc. Recruiting
        Boston, Massachusetts, United States, 02215
        Contact: F. Stephen Hodi, Site 40     617-667-1930        
        Massachusetts General Hospital Recruiting
        Boston, Massachusetts, United States, 02114
        Contact: F. Stephen Hodi, Site 40     617-667-1930 
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        jag
        Participant

        Here are some locations close to Vermont, for IPI

         

        Dartmouth Hitchcock Medical Center Recruiting
        Lebanon, New Hampshire, United States, 03756
        Contact: Marc Ernstoff, Site 044     603-650-5534        

         

        Dana-Farber Cancer Inst Recruiting
        Boston, Massachusetts, United States, 02115
        Contact: Fstephen Hodi, Site 040     617-632-5053        
        Beth Israel Deaconess Medical Center, Inc. Recruiting
        Boston, Massachusetts, United States, 02215
        Contact: F. Stephen Hodi, Site 40     617-667-1930        
        Massachusetts General Hospital Recruiting
        Boston, Massachusetts, United States, 02114
        Contact: F. Stephen Hodi, Site 40     617-667-1930 
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        Vermont_Donna
        Participant

        Hi John,

           I do travel 88 miles one way to Dartmouth Hitchcock Medical Center (the Norris Cotton Cancer Center) but the good thing is thats not too far and I am from there so have lots of friends and family there. I am doing the Ipi trial there with Dr Marc Ernstoff…..hes GREAT!!! I love him!!! Thanks for the other info, just for second opinions, etc.

        Vermont_Donna

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        Vermont_Donna
        Participant

        Hi John,

           I do travel 88 miles one way to Dartmouth Hitchcock Medical Center (the Norris Cotton Cancer Center) but the good thing is thats not too far and I am from there so have lots of friends and family there. I am doing the Ipi trial there with Dr Marc Ernstoff…..hes GREAT!!! I love him!!! Thanks for the other info, just for second opinions, etc.

        Vermont_Donna

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        ValinMtl
        Participant

        Hi Donna.

        I did have the sponge vac the first time around and it was wonderful but the head of the wound clinic at the RVH nixed it second time round because there was the possibility that I did not have clear margins…and you with in transits would probably not be a good candidate for same reason. He is of the opinion that sponge vac could possibly spread melanoma if it is active. His name is Lincoln de Sousa at Royal Victoria Hospital..Doctors do speak to each other and perhaps your doctor could discuss your case with him..he is the best…actually I believe he is not a doctor, however he runs the wound clinic..everybody calls him Lincoln but all the doctors treat him with the greatest respect.

        For the second surgery with my major problems with about 8 weeks of trying to heal, being seen by my surgeons who seemed to not be able to get it to heal…Lincoln came down and took one look at it, and changed the procedure. He said there was bacteria in the wound, requested that the nurses who were cleaning my wound daily start 'bactigras' for a few treatments to destroy bacteria and then 'silver cel'…at least that is the order I seem to recall (speak to your doctor)…my problem wound was healed very quickly with this treatment.

        I like what John (JAG) has to say below.

        All the best, Val

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        ValinMtl
        Participant

        Hi Donna.

        I did have the sponge vac the first time around and it was wonderful but the head of the wound clinic at the RVH nixed it second time round because there was the possibility that I did not have clear margins…and you with in transits would probably not be a good candidate for same reason. He is of the opinion that sponge vac could possibly spread melanoma if it is active. His name is Lincoln de Sousa at Royal Victoria Hospital..Doctors do speak to each other and perhaps your doctor could discuss your case with him..he is the best…actually I believe he is not a doctor, however he runs the wound clinic..everybody calls him Lincoln but all the doctors treat him with the greatest respect.

        For the second surgery with my major problems with about 8 weeks of trying to heal, being seen by my surgeons who seemed to not be able to get it to heal…Lincoln came down and took one look at it, and changed the procedure. He said there was bacteria in the wound, requested that the nurses who were cleaning my wound daily start 'bactigras' for a few treatments to destroy bacteria and then 'silver cel'…at least that is the order I seem to recall (speak to your doctor)…my problem wound was healed very quickly with this treatment.

        I like what John (JAG) has to say below.

        All the best, Val

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        Vermont_Donna
        Participant

        Thanks Val,

          I talked to my surgeon yesterday and we decided to do the wound vac…"activac"…I HAD to bring it up???!!!!! Thanks for your input!!!! I'll let you know how it goes!

        Hugs,

        Vermont_Donna

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        Vermont_Donna
        Participant

        Thanks Val,

          I talked to my surgeon yesterday and we decided to do the wound vac…"activac"…I HAD to bring it up???!!!!! Thanks for your input!!!! I'll let you know how it goes!

        Hugs,

        Vermont_Donna

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      djpayn
      Participant

      Donna,

      please email me so i can give u my #- im just catching up on you and would love to speak to you.

      Have faith in ur Onc…. he is so fantastic and such a good doc… i miss him terribly. 

      im glad they are doing everything they can to keep you in trials and such.

      hang tight my friend!

       

      [email protected]

       

      dawna

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      djpayn
      Participant

      Donna,

      please email me so i can give u my #- im just catching up on you and would love to speak to you.

      Have faith in ur Onc…. he is so fantastic and such a good doc… i miss him terribly. 

      im glad they are doing everything they can to keep you in trials and such.

      hang tight my friend!

       

      [email protected]

       

      dawna

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      Rocklove
      Participant

      Who ever that Dr. was that said the word amputation….. I would have got up and hobbled, wheel chaired, crutches or whatever means I had to get the heck out of there.

      They use to do amputations for melanoma patients in the 70's and most patients died way before they fully recovered from the amputation.

      I know you are going through the IPI know… and I would of held out too… to be able to start the drug in hopes of curing you. Not sure I would give him a second chance with a next plan if IPI fails. I would be considering other options now while you have time.

      We Wish You The Best Donna.. Prayers and Positive Thoughts for You and Family

      Rocky (Stage IV Liver Mets)

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      Rocklove
      Participant

      Who ever that Dr. was that said the word amputation….. I would have got up and hobbled, wheel chaired, crutches or whatever means I had to get the heck out of there.

      They use to do amputations for melanoma patients in the 70's and most patients died way before they fully recovered from the amputation.

      I know you are going through the IPI know… and I would of held out too… to be able to start the drug in hopes of curing you. Not sure I would give him a second chance with a next plan if IPI fails. I would be considering other options now while you have time.

      We Wish You The Best Donna.. Prayers and Positive Thoughts for You and Family

      Rocky (Stage IV Liver Mets)

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        Vermont_Donna
        Participant

        Thanks Rocky,

          Wow, you are having your own set of problems with news! I am learning so much from your posts and from a lot of posts here on MPIP and I love the support from people who walk in our shoes!!!!

        Thanks,

        Vermont_Donna

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        Vermont_Donna
        Participant

        Thanks Rocky,

          Wow, you are having your own set of problems with news! I am learning so much from your posts and from a lot of posts here on MPIP and I love the support from people who walk in our shoes!!!!

        Thanks,

        Vermont_Donna

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      King
      Participant

      Donna,

       

      Please know that you are in my thoughts and prayers.  Of course, I am really hoping that Ipi is your magic bullet.  It's nice that your mother is with you through all this.  One day at a time…

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      King
      Participant

      Donna,

       

      Please know that you are in my thoughts and prayers.  Of course, I am really hoping that Ipi is your magic bullet.  It's nice that your mother is with you through all this.  One day at a time…

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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        Vermont_Donna
        Participant

        Hi King,

          Thanks so much….yeah my mom is hanging in thre with me…she was crying along with me about the leg amputation. How are you doing??

        Vermont_Donna

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        Vermont_Donna
        Participant

        Hi King,

          Thanks so much….yeah my mom is hanging in thre with me…she was crying along with me about the leg amputation. How are you doing??

        Vermont_Donna

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      kthekhal
      Participant

      Donna,

           I am a Stage 3b survivor (primary on left forearm) diagnosed June 2008  –  WLE on Sep 10th  –  left arm pit  lymph nodes  removal (Oct 16th) ( 2 nodes with micro mets) – interferon for 8 months  –  (ended sep 09)

      came across this very interesting article  – http://www.sciencedaily.com/releases/2010/11/101118124206.htm

      Strangely , I am an  Asian Indian ( aka dark skinned  !! ) –  living in the US since 1996  – and my oncologist says that I am the first Asian Indian that he has treated for melanoma !!

      But I attribute my survival because of Yoga !!

      Best Wishes,

      Kish T

       

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      kthekhal
      Participant

      Donna,

           I am a Stage 3b survivor (primary on left forearm) diagnosed June 2008  –  WLE on Sep 10th  –  left arm pit  lymph nodes  removal (Oct 16th) ( 2 nodes with micro mets) – interferon for 8 months  –  (ended sep 09)

      came across this very interesting article  – http://www.sciencedaily.com/releases/2010/11/101118124206.htm

      Strangely , I am an  Asian Indian ( aka dark skinned  !! ) –  living in the US since 1996  – and my oncologist says that I am the first Asian Indian that he has treated for melanoma !!

      But I attribute my survival because of Yoga !!

      Best Wishes,

      Kish T

       

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        Vermont_Donna
        Participant

        Thanks! I enjoyed reading that article!! Good luck!

        Vermont_Donna

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        Vermont_Donna
        Participant

        Thanks! I enjoyed reading that article!! Good luck!

        Vermont_Donna

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      Donna I am so sorry that it has been so rough.  I am glad that you started the Ipi treatments and pray that it is your answer to beat the beast back.  I think of you all the time and wish I was still in Vermont so we could meet. 

      Take care.   I pray that you can find peace during this treatment and pray that you feel God's loving arms wrapped around you, holding you.  Know that God is with you every step of the way.

      Peace and blessings,

      Shelly

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        Vermont_Donna
        Participant

        Hi Shelley,

          Well I have my passport, I am just going to have to come to Switzerland! I have always wanted to got here ever since I fell in love with the book Heidi!!! And then The Sound of Music movie!!! Thanks for the support. How are you feeling??

        Hugs,

        Vermont_Donna

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        Vermont_Donna
        Participant

        Hi Shelley,

          Well I have my passport, I am just going to have to come to Switzerland! I have always wanted to got here ever since I fell in love with the book Heidi!!! And then The Sound of Music movie!!! Thanks for the support. How are you feeling??

        Hugs,

        Vermont_Donna

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      Donna I am so sorry that it has been so rough.  I am glad that you started the Ipi treatments and pray that it is your answer to beat the beast back.  I think of you all the time and wish I was still in Vermont so we could meet. 

      Take care.   I pray that you can find peace during this treatment and pray that you feel God's loving arms wrapped around you, holding you.  Know that God is with you every step of the way.

      Peace and blessings,

      Shelly

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