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9 year old & ipi

Forums General Melanoma Community 9 year old & ipi

  • Post
    Dawn
    Participant

    My nine year old daughter just completed her 3rd infusion of ipi.  She was diagnosed in Nov 2010 with Melanoma of the CNS witha primary in her brain….very rare for a child.  She is tolerating it well.  Itches tremendously at times, but otherwise we are not seeing many other problems.  Clinically, she is doing well.  This is the best she has felt since she was diagnosed.  Prior to ipi, she went through WBR and was on temodar.  We were told that she is the only child on this right now…we had to work with the doc, the pharmaceutical company, and the FDA f

    My nine year old daughter just completed her 3rd infusion of ipi.  She was diagnosed in Nov 2010 with Melanoma of the CNS witha primary in her brain….very rare for a child.  She is tolerating it well.  Itches tremendously at times, but otherwise we are not seeing many other problems.  Clinically, she is doing well.  This is the best she has felt since she was diagnosed.  Prior to ipi, she went through WBR and was on temodar.  We were told that she is the only child on this right now…we had to work with the doc, the pharmaceutical company, and the FDA for this to go through.   My question is,  are there any other children out there that anyone knows about that are on ipi?  I would like to connect with them if possible.  Thanks Dawn

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  • Replies
      MRFUser2011
      Participant

      Dawn, as a mom, my heart goes out to you.  I don't have any information for you and am new to the board.  I was shocked to see age 9 in the subject line. I am not sure what to say, but could not move on without sending heartfelt hope the ipi works and your daughter will feel well and become NED.  

      Shari

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      MRFUser2011
      Participant

      Dawn, as a mom, my heart goes out to you.  I don't have any information for you and am new to the board.  I was shocked to see age 9 in the subject line. I am not sure what to say, but could not move on without sending heartfelt hope the ipi works and your daughter will feel well and become NED.  

      Shari

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        Laurie from maine
        Participant

        Dawn, I  dont know of anyone that young but hope someone on this site can help you.  I also needed to respond and let you know my thoughts and prayers are with you and  your daughter.

        laurie from maine 

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        Laurie from maine
        Participant

        Dawn, I  dont know of anyone that young but hope someone on this site can help you.  I also needed to respond and let you know my thoughts and prayers are with you and  your daughter.

        laurie from maine 

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      Cate
      Participant

      Hi Dawn,  I'm sorry you are going through this with your daughter.  I do not know of anyone going through IPI that is so young.  The good news is, there are many people on this board who have found success with this treatment.  I'll be thinking of you both.  Cate

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      Cate
      Participant

      Hi Dawn,  I'm sorry you are going through this with your daughter.  I do not know of anyone going through IPI that is so young.  The good news is, there are many people on this board who have found success with this treatment.  I'll be thinking of you both.  Cate

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      Carmon in NM
      Participant

      I'm not a parent and I can't even imagine what it must be like to go through this with a child. All I can think to say is that I will be praying for you and your daughter and your entire family. Carmon

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      Carmon in NM
      Participant

      I'm not a parent and I can't even imagine what it must be like to go through this with a child. All I can think to say is that I will be praying for you and your daughter and your entire family. Carmon

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        Tracy Chicago
        Participant

        Hi Dawn,

        Maybe you could contact the local news or a national newspaper and see if they'll do a story on your daugther and then maybe another family in your same situation will see it and contact you.  Or maybe your oncologist can contact his collegues to see if they know anyone.

        Good luck to you and your daughter. She must be a brave little girl!

        Hugs,

        Tracy

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        Tracy Chicago
        Participant

        Hi Dawn,

        Maybe you could contact the local news or a national newspaper and see if they'll do a story on your daugther and then maybe another family in your same situation will see it and contact you.  Or maybe your oncologist can contact his collegues to see if they know anyone.

        Good luck to you and your daughter. She must be a brave little girl!

        Hugs,

        Tracy

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      LynnLuc
      Participant

      Hi Dawn, I don't know anything about a child on Ipi or Temodar..

      I did Temodar from July 09 to March 2010 after I had radiation.

      I do know what it's like to have a child with cancer and the emotional turmoil … I lost my son to a rare cancer…not melanoma. He was diagnosed at 14 and passed away a few months after turning 16. When he was diagnosed and we spent most our time in the ped oncology ward I was shocked to see all the children battling cancer…it was another world altogether. Praying for NED for you child!

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      LynnLuc
      Participant

      Hi Dawn, I don't know anything about a child on Ipi or Temodar..

      I did Temodar from July 09 to March 2010 after I had radiation.

      I do know what it's like to have a child with cancer and the emotional turmoil … I lost my son to a rare cancer…not melanoma. He was diagnosed at 14 and passed away a few months after turning 16. When he was diagnosed and we spent most our time in the ped oncology ward I was shocked to see all the children battling cancer…it was another world altogether. Praying for NED for you child!

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      dafad777
      Participant

      dawn i came across your post looking for other mothers.my daughter is nine and we havent been giving a stage or treatment yet.we go see the specialist feb 22.I just had a question.how was she dignoised?my daughters case has gone to three different patholigist.and know one gives me clear answers,because they think her case is problematic.im sure because of her age.my thoughts got out to you and your family. 

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      dafad777
      Participant

      dawn i came across your post looking for other mothers.my daughter is nine and we havent been giving a stage or treatment yet.we go see the specialist feb 22.I just had a question.how was she dignoised?my daughters case has gone to three different patholigist.and know one gives me clear answers,because they think her case is problematic.im sure because of her age.my thoughts got out to you and your family. 

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        Vermont_Donna
        Participant

        Dear Dawn,

         I am so sorry to hear about your daughter. I did think there was another family with a nine year old and I see they just responded above so thats good. I have no suggestions to offer but will pray for your daughter and family that she responds well to this treatment. I just finished my 4th Ipi infusion and I started seeing a response after the third infusion, and definitely even more after the 4th infusion. I had very little side effects.

        Best of luck!

        Vermont_Donna, stage 3a

        just completed 4th infusion of Ipi

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        Vermont_Donna
        Participant

        Dear Dawn,

         I am so sorry to hear about your daughter. I did think there was another family with a nine year old and I see they just responded above so thats good. I have no suggestions to offer but will pray for your daughter and family that she responds well to this treatment. I just finished my 4th Ipi infusion and I started seeing a response after the third infusion, and definitely even more after the 4th infusion. I had very little side effects.

        Best of luck!

        Vermont_Donna, stage 3a

        just completed 4th infusion of Ipi

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        Dawn
        Participant

        My daughter was experiencing early morning headaches and vomiting about two to three times a month.  They kept passing her off with migraines.  I requested scans and they supposedly came back clear.  Then she experienced a bleed and they found a "tumor."  We were initially diagnosed with something else until we had transferred to St. Judes and they diagnosed it as melanoma. We have also had MDAnderson look at the pathology and Memorial SLoan Kettering….both also confirming melanoma.  Be persistent and go with your gut.  My daughter has a caringbridge website–beccaede.  You will find my email on there if you want to email me directly. Good Luck Dawn

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        Dawn
        Participant

        My daughter was experiencing early morning headaches and vomiting about two to three times a month.  They kept passing her off with migraines.  I requested scans and they supposedly came back clear.  Then she experienced a bleed and they found a "tumor."  We were initially diagnosed with something else until we had transferred to St. Judes and they diagnosed it as melanoma. We have also had MDAnderson look at the pathology and Memorial SLoan Kettering….both also confirming melanoma.  Be persistent and go with your gut.  My daughter has a caringbridge website–beccaede.  You will find my email on there if you want to email me directly. Good Luck Dawn

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        Melanoma Mom
        Participant

        dafad777 ~ Get a copy of all the pathology and start studying. My 15 year old son's pathology was very complex and unusual …. there is still some disagreement amongst the specialists at Dana-Farber about his case. So I took it upon myself to learn as much as I could and there was some very interesting information in the reports that helped me make some of my own conclusions and decisions. No, I'm not a medical expert, but I am more vested in the situation than anyone else, other than my husband. Seek out the best in the country for the answers. 

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        Melanoma Mom
        Participant

        dafad777 ~ Get a copy of all the pathology and start studying. My 15 year old son's pathology was very complex and unusual …. there is still some disagreement amongst the specialists at Dana-Farber about his case. So I took it upon myself to learn as much as I could and there was some very interesting information in the reports that helped me make some of my own conclusions and decisions. No, I'm not a medical expert, but I am more vested in the situation than anyone else, other than my husband. Seek out the best in the country for the answers. 

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      Jim M.
      Participant

      Try emailing Dr. Weber. He may be able to give you more info. on this. His email is: [email protected]

      God Bless,

       Jim M.

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      Jim M.
      Participant

      Try emailing Dr. Weber. He may be able to give you more info. on this. His email is: [email protected]

      God Bless,

       Jim M.

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      all Come In
      Participant

      Dawn

      It looks like a major concession was made by BMS and the FDA.  I'm glad your daughter is doing well on the IPI.

      I'm sure that after the FDA approval is granted there will be other children on the treatment.

      CI

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      all Come In
      Participant

      Dawn

      It looks like a major concession was made by BMS and the FDA.  I'm glad your daughter is doing well on the IPI.

      I'm sure that after the FDA approval is granted there will be other children on the treatment.

      CI

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      Dawn
      Participant

      Just want to clarify, my daughter is the 9 year old & ipi–Becca.  I was getting some posts from people that I think were meant for the other 9 year old.  Update…..we just got back from Sloan Kettering and finished our 4th infusion.  We had a scan about 2 weeks ago because Becca experienced a bleed, that she is nicely recovering from. The doc said he was pretty happy with what the scans are showing.  We go back out in two weeks for official scans to check on the disease.  But from what he has seen so far….it does look good.  She tolerated all 4 infusions well and is doing well. We can only hope that the scans show more good news. 

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      Dawn
      Participant

      Just want to clarify, my daughter is the 9 year old & ipi–Becca.  I was getting some posts from people that I think were meant for the other 9 year old.  Update…..we just got back from Sloan Kettering and finished our 4th infusion.  We had a scan about 2 weeks ago because Becca experienced a bleed, that she is nicely recovering from. The doc said he was pretty happy with what the scans are showing.  We go back out in two weeks for official scans to check on the disease.  But from what he has seen so far….it does look good.  She tolerated all 4 infusions well and is doing well. We can only hope that the scans show more good news. 

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