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starting Ipi trial in 2 weeks if I meet clinical trial guidelines

Forums General Melanoma Community starting Ipi trial in 2 weeks if I meet clinical trial guidelines

  • Post
    Vermont_Donna
    Participant

    Hi,

    Hi,

      Had my checkup, PET/CT scans yesterday……I found three new sub q's last week, and showed them to my oncology surgeon and melanoma oncologist. I am not a good surgical candidate given my poorly healing leg post my ILP 14 months ago and unhealed wider excision wound from 5 months ago, that requires narcotic meds for the pain around the clock (in fact I am switching to methadone, oxcy's, effexor, and increase my gabapentin to three times a day (900 mg three times a day, currently on 900mg 2 times a day). So hopefully the wound will not preclude me from participating in the trial….supposed to start 11/17 or 11/18.

    Vermont_Donna, stage 3a

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  • Replies
      ValinMtl
      Participant

      Hi Donna,

      Sorry to hear about the new sub q's…it is so unsettling when mel is on the rampage. Glad to hear that you be starting ipi if everything proceeds as scheduled.  It most definitely has slowed down the growth of my tumors on my leg and will be looking for good scans at the end of November after my 4th treatment. Hopefully, it will also annihilate the lesion on my lung.  If all goes well, I'll start my next set of 4 treatments in December.  At which hospital will you be having treatment?

      I stopped by for a visit with Sharyn today during her 3rd treatment (she's in from Newfoundland). Boy, she's tough, flying in from Newfoundland every 3 weeks..I think the day at the hospital is long but she has her treatment and flies home on the same day!!  She's looking good and upbeat, we're both thinking positive thoughts.

      By the way, Donna, I'm attending a Doorways to Healing Workshop this weekend in Plattsburgh.  It is part 2 of an earlier one from May.  It is for cancer survivors and, if you are interested in any upcoming ones, I could send you the contact person at the Fitzpatrick Cancer Centre.

      I'm saying a prayer that you will fly through the criteria and be accepted as soon as possible for ipilimumab.  Val, stage IV

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        Vermont_Donna
        Participant

        Hi Val,

          Thanks for the support! Good you got to see Sharyn!!! Yes I would be interested in those workshops, Plattsburgh is like 3 or a little more hours away!

        Hugs,

        Vermont_Donna

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        Vermont_Donna
        Participant

        Hi Val,

          Thanks for the support! Good you got to see Sharyn!!! Yes I would be interested in those workshops, Plattsburgh is like 3 or a little more hours away!

        Hugs,

        Vermont_Donna

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      ValinMtl
      Participant

      Hi Donna,

      Sorry to hear about the new sub q's…it is so unsettling when mel is on the rampage. Glad to hear that you be starting ipi if everything proceeds as scheduled.  It most definitely has slowed down the growth of my tumors on my leg and will be looking for good scans at the end of November after my 4th treatment. Hopefully, it will also annihilate the lesion on my lung.  If all goes well, I'll start my next set of 4 treatments in December.  At which hospital will you be having treatment?

      I stopped by for a visit with Sharyn today during her 3rd treatment (she's in from Newfoundland). Boy, she's tough, flying in from Newfoundland every 3 weeks..I think the day at the hospital is long but she has her treatment and flies home on the same day!!  She's looking good and upbeat, we're both thinking positive thoughts.

      By the way, Donna, I'm attending a Doorways to Healing Workshop this weekend in Plattsburgh.  It is part 2 of an earlier one from May.  It is for cancer survivors and, if you are interested in any upcoming ones, I could send you the contact person at the Fitzpatrick Cancer Centre.

      I'm saying a prayer that you will fly through the criteria and be accepted as soon as possible for ipilimumab.  Val, stage IV

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      King
      Participant

      Hi Donna,

       

      You really have had a rough time with wounds not healing and pain.  Big sigh…

       

      I hope and pray that you will be accepted into the Ipi trial.  Would you mind sharing where you'll be receiving Ipi and how you made the decision for this treatment?  I am in no way criticizing your choice.  I'm just curious as I know others are seeking options for disease progression as well.  Did you get BRAF tested?

       

      Please keep us posted.  I hope the new pain management regime will be effective.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      King
      Participant

      Hi Donna,

       

      You really have had a rough time with wounds not healing and pain.  Big sigh…

       

      I hope and pray that you will be accepted into the Ipi trial.  Would you mind sharing where you'll be receiving Ipi and how you made the decision for this treatment?  I am in no way criticizing your choice.  I'm just curious as I know others are seeking options for disease progression as well.  Did you get BRAF tested?

       

      Please keep us posted.  I hope the new pain management regime will be effective.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      SusanE
      Participant

      Hi Donna. I am sorry to hear you are going through this. We understand. Jerry had his ILP Sept 16 last year, and he just had a below the knee amputation of his foot Oct 8 as the foot just never healed, foot drop, osteomyelitis, open ulcers etc.

       

      We are praying his stump will heal and so far the incision at the end of the stump is doing well. He started hyperbaric oxygen 3 days after surgery and it really made a difference. he also had some intransits removed on the side of his knee and well he is having a little trouble with a part of that incision that opened and is leaking. He has had quite a bit of trouble with lymphedema and the ILP didn';t help. I will tell you that they found quite a bit of necrotic tissue in the calf and had to go higher when amputating. Those ILPs are real bad boys and we had no idea what it could do.

       

      Anyway, have you ever looked into hyperbaric? Jerry has been on the meds you mention for most of the year due to his foot. Watch for osteomyelitis. He had to have a piccline put in and was on IV antibiotics from end of May to just past surgery.

       

      Hyperbaric was approved by insurance, 20 sessions. We had the consult and made sure the docs knew how much trouble we have had over the past year. I really recommend it. It seems to keep the lymph fluid dry.

       

      Take care Donna.

      Susan wife of Jerry Stage III, post BK amputation due to effects of Isolated Limb Perfusion

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        Vermont_Donna
        Participant

        Hi Susan,

          I had no idea of what Jerry has been through……AMPUTATION??? OH NO!!! And still leg healing issues….I would worry about that for me too. I have thought of the hyperbaric treatments and meant to ask my doctor (surgeon) but I will when I am down there next week. So tell me more about Jerry's leg and what you are doing to promote healing. Does he lay in bed with his stump elevated now?? How is his mental health??

        Hugs,

        Vermont_Donna, stage 3a

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        Vermont_Donna
        Participant

        Hi Susan,

          I had no idea of what Jerry has been through……AMPUTATION??? OH NO!!! And still leg healing issues….I would worry about that for me too. I have thought of the hyperbaric treatments and meant to ask my doctor (surgeon) but I will when I am down there next week. So tell me more about Jerry's leg and what you are doing to promote healing. Does he lay in bed with his stump elevated now?? How is his mental health??

        Hugs,

        Vermont_Donna, stage 3a

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      SusanE
      Participant

      Hi Donna. I am sorry to hear you are going through this. We understand. Jerry had his ILP Sept 16 last year, and he just had a below the knee amputation of his foot Oct 8 as the foot just never healed, foot drop, osteomyelitis, open ulcers etc.

       

      We are praying his stump will heal and so far the incision at the end of the stump is doing well. He started hyperbaric oxygen 3 days after surgery and it really made a difference. he also had some intransits removed on the side of his knee and well he is having a little trouble with a part of that incision that opened and is leaking. He has had quite a bit of trouble with lymphedema and the ILP didn';t help. I will tell you that they found quite a bit of necrotic tissue in the calf and had to go higher when amputating. Those ILPs are real bad boys and we had no idea what it could do.

       

      Anyway, have you ever looked into hyperbaric? Jerry has been on the meds you mention for most of the year due to his foot. Watch for osteomyelitis. He had to have a piccline put in and was on IV antibiotics from end of May to just past surgery.

       

      Hyperbaric was approved by insurance, 20 sessions. We had the consult and made sure the docs knew how much trouble we have had over the past year. I really recommend it. It seems to keep the lymph fluid dry.

       

      Take care Donna.

      Susan wife of Jerry Stage III, post BK amputation due to effects of Isolated Limb Perfusion

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      Vermont_Donna
      Participant

      To answer King's questions……I am B-RAF negative, and I just found that out too. I will be doing the Ipi trial at Dartmouth Hitchcock Medical Center, in Lebanon, NH, with Dr Marc Ernstoff, a melanoma oncologist. I have found him to be completely on top of everything, and very knowledgeable. The decision to do Ipi was reached after talking with him about options and the fact that my oncology surgeon was VERY releuctant to "cut into me again" as he said due to my extremely poor healing on my leg and known history of repeated leg infections requiring hospitalization. My mel.oncologist also said that in case melanoma had "seeded" itself elsewhere but just hasnt  grown big enough to show up on the scans was another reason to try a systemic approach. Nothing we have done has eradicted melanoma from my leg, but perhaps slowed it down?? My leg has had 10 lesions/tumors, all presenting VERY different……..from moles that looked "funny" to

      "blue smudges" under the skin to "sub q lumps I cant see but only feel" to this new presentation for me which are "blue skinned sub q lumps"…two of them and another blue "smudge" like a bruise under the skin. These three areas are about three to four inches apart in the non radiated area of my lower leg, in my lower calf to my ankle……ALL lower than any previous melanoma lesions……what the docs are calling "RETROGRADE melanoma". Again, the possibility of eventual leg amputation was brought up as another option IF the melanoma worsens despite further treatment. NOT an option I even want to think about!!!!

      The other HUGE issue I am wrestling with is work……to continue or not…to go half time or not…….I am tired and feel stressed to the max and have already told my supervisor things have to change, that I cant continue like I am (its the paperwork required after seeing my caseload of 34 kids, and documenting therapy sessions, all contacts with agencies, parents, school staff, etc, and writing assessments), and the travel to one school which is remotely located….a 30 minute trip to the school, after a 30 minute trip just to get to work……so that is three times a week, two of the days are HALF DAYS which are just killing me. I have asked to give up those half days, send another clinician to pick up 7 of my clients (kids) and let me be office based, do my paperwork and maybe see a couple of clients. I would still be school based three days a week, but two days are in closer schools, one full day would be to that remote location.

      We know this trial is going to require tarvel to DHMC frequently and that is 90 minutes away one way. Fortunately DHMC is located in the area I grew up so that is where my family is, and they will go with me, have me stay over when I need to etc. I also need to get a port put in as I have practically no veins which are good access in either arm anymore……Wednesday it took 4 picks to get an IV in and two times to get blood drawn. For my surgery a month ago it took 5 times to get an IV in….and we are talking about the BEST IV staff being called in to do this. I for sure have a reputation at DHMC now…….the IV team Hates me…….lol!

      Thanks for giving me an opportunity to explain more/vent.

      Vermont_Donna, stage 3a

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        King
        Participant

        Donna,

         

        Thanks so much for the thorough explanation.  It will help others in making decisions.  I truly am so sorry that your battle is so tough.  And just reading about your work and what it involves tires me out.  I sure hope the supervisor will work with you and understands your dilemma.

         

        I think you will love your port.  Multiple sticks for IV therapy or blood draws is no fun.

         

        Please keep us posted.

         

        Stay Strong
        King

        Stage IV 7/05 Liver mets

         

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        King
        Participant

        Donna,

         

        Thanks so much for the thorough explanation.  It will help others in making decisions.  I truly am so sorry that your battle is so tough.  And just reading about your work and what it involves tires me out.  I sure hope the supervisor will work with you and understands your dilemma.

         

        I think you will love your port.  Multiple sticks for IV therapy or blood draws is no fun.

         

        Please keep us posted.

         

        Stay Strong
        King

        Stage IV 7/05 Liver mets

         

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      Vermont_Donna
      Participant

      To answer King's questions……I am B-RAF negative, and I just found that out too. I will be doing the Ipi trial at Dartmouth Hitchcock Medical Center, in Lebanon, NH, with Dr Marc Ernstoff, a melanoma oncologist. I have found him to be completely on top of everything, and very knowledgeable. The decision to do Ipi was reached after talking with him about options and the fact that my oncology surgeon was VERY releuctant to "cut into me again" as he said due to my extremely poor healing on my leg and known history of repeated leg infections requiring hospitalization. My mel.oncologist also said that in case melanoma had "seeded" itself elsewhere but just hasnt  grown big enough to show up on the scans was another reason to try a systemic approach. Nothing we have done has eradicted melanoma from my leg, but perhaps slowed it down?? My leg has had 10 lesions/tumors, all presenting VERY different……..from moles that looked "funny" to

      "blue smudges" under the skin to "sub q lumps I cant see but only feel" to this new presentation for me which are "blue skinned sub q lumps"…two of them and another blue "smudge" like a bruise under the skin. These three areas are about three to four inches apart in the non radiated area of my lower leg, in my lower calf to my ankle……ALL lower than any previous melanoma lesions……what the docs are calling "RETROGRADE melanoma". Again, the possibility of eventual leg amputation was brought up as another option IF the melanoma worsens despite further treatment. NOT an option I even want to think about!!!!

      The other HUGE issue I am wrestling with is work……to continue or not…to go half time or not…….I am tired and feel stressed to the max and have already told my supervisor things have to change, that I cant continue like I am (its the paperwork required after seeing my caseload of 34 kids, and documenting therapy sessions, all contacts with agencies, parents, school staff, etc, and writing assessments), and the travel to one school which is remotely located….a 30 minute trip to the school, after a 30 minute trip just to get to work……so that is three times a week, two of the days are HALF DAYS which are just killing me. I have asked to give up those half days, send another clinician to pick up 7 of my clients (kids) and let me be office based, do my paperwork and maybe see a couple of clients. I would still be school based three days a week, but two days are in closer schools, one full day would be to that remote location.

      We know this trial is going to require tarvel to DHMC frequently and that is 90 minutes away one way. Fortunately DHMC is located in the area I grew up so that is where my family is, and they will go with me, have me stay over when I need to etc. I also need to get a port put in as I have practically no veins which are good access in either arm anymore……Wednesday it took 4 picks to get an IV in and two times to get blood drawn. For my surgery a month ago it took 5 times to get an IV in….and we are talking about the BEST IV staff being called in to do this. I for sure have a reputation at DHMC now…….the IV team Hates me…….lol!

      Thanks for giving me an opportunity to explain more/vent.

      Vermont_Donna, stage 3a

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      Sharyn
      Participant

      Hi Donna,

      I'm shocked that it's taking you so long to heal! But I'm glad you'll be starting Ipi. I had my 3rd infusion yesterday, and up to now, I haven't had any side effects. And since most of my tumors are internal, (brain and lung) we'll have to wait until my scans on Dec 8. Val dropped by to see me and we had a great chat. Maybe once you start you can meet us in Montreal and we can do lunch and compare notes. Hang in there, girl! Ipi is on the way!

      Hugs

      Sharyn, Stage IV

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        killmel
        Participant

        Hi Sharyn,

         

        SOOOOOOOOOOOOOOO Happy to see your post & that you are doing well. I know that your last surgery you removed many tumors on your leg. Have anymore tumor grown on your leg??? How are they healing???

        Wishing you the best & great "clear" scans

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        killmel
        Participant

        Hi Sharyn,

         

        SOOOOOOOOOOOOOOO Happy to see your post & that you are doing well. I know that your last surgery you removed many tumors on your leg. Have anymore tumor grown on your leg??? How are they healing???

        Wishing you the best & great "clear" scans

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      Sharyn
      Participant

      Hi Donna,

      I'm shocked that it's taking you so long to heal! But I'm glad you'll be starting Ipi. I had my 3rd infusion yesterday, and up to now, I haven't had any side effects. And since most of my tumors are internal, (brain and lung) we'll have to wait until my scans on Dec 8. Val dropped by to see me and we had a great chat. Maybe once you start you can meet us in Montreal and we can do lunch and compare notes. Hang in there, girl! Ipi is on the way!

      Hugs

      Sharyn, Stage IV

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      bill58
      Participant

      Donna,

      I am so sorry to hear about the new developments.  I sure hope the Ipi compassionate use works for you.  I can sympathize with the whole work issue.  I am also under stress from work, but dont have the option to work part time and want to save my short term disability until I really need it.  This Mel is a savage beast that we have to keep fighting.

      I am trying to get on Compassionate use Ipi as well, once they get the brain mets under control.

      Bill

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      bill58
      Participant

      Donna,

      I am so sorry to hear about the new developments.  I sure hope the Ipi compassionate use works for you.  I can sympathize with the whole work issue.  I am also under stress from work, but dont have the option to work part time and want to save my short term disability until I really need it.  This Mel is a savage beast that we have to keep fighting.

      I am trying to get on Compassionate use Ipi as well, once they get the brain mets under control.

      Bill

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