Tough Day
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Tough Day

› Forums › General Melanoma Community › Tough Day

  • Post
    • January 13, 2017 at 5:07 am
    maperny
    Participant

    Yesterday my husband, Juan, had 4 hours of MRI's under sedation due to current back pain levels.  They did spine, pelvis and brain.  Today CT to check abdomen/chest.  

    Got results back from MRI's and devastated to learn from spine Drs/radiologist here at MDA that he has LMD plus brain mets for the first time.  

    Not sure about rest of results yet.

    This has been such a fight since stage 4 diagnosed in Oct 2014, high dose IL-2. Ipi, Opdivo, Il-10, Keytruda, CVD chemo, ipi/Nivo combo, surgeries, radiation and TIL.  And now leptomeningeal disease.  I have always had hope and tried to keep us all upbeat but this news feels like a punch in the stomach.

    Waiting to hear next steps.  Any advice from anyone about LMD treatments and what we should expect would be much appreciated.

    Maria

Viewing 23 reply threads
  • Replies
      • January 13, 2017 at 6:05 am
      UBContributor
      Participant

      So sad and scaring to hear…we are with you!

      • January 13, 2017 at 6:05 am
      UBContributor
      Participant

      So sad and scaring to hear…we are with you!

      • January 13, 2017 at 6:05 am
      UBContributor
      Participant

      So sad and scaring to hear…we are with you!

      • January 13, 2017 at 6:10 am
      adriana cooper
      Participant

      Sorry he has joined this part of the club. I imagine he will likely be getting one or more lumbar punctures to test his CSF in order to make a definitive diagnosis. Please see my post here

      https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/please-readi-am-scared

      and here

      https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/md-anderson-0

      MDA Dr.Glitza would be the place for treatment. I would be interested what the other doctors there have to say on the subject.

      Yes new information of this sort is very much a kick in the stomach. Although you can't change the diagnosis or the prognosis, you control what you do with the information and your time. Stay positive, make a conscious effort to not stress. Cry when you need and then enjoy what happiness you can. I understand from others that the IT-IL2 treatment that may be offered there is rough (less so than IV-IL2 ??) and continuous but some have done it with months and years of success. I hope it is successful for your husband if it is right for him and he chooses it and I also understand if he doesn't. 

      BRAF status?? Give it a try for some relief even if re-introduction, if appropriate.

      Above all live, love and enjoy each other and life. 

      Best wishes, Rob

      • January 13, 2017 at 6:10 am
      adriana cooper
      Participant

      Sorry he has joined this part of the club. I imagine he will likely be getting one or more lumbar punctures to test his CSF in order to make a definitive diagnosis. Please see my post here

      https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/please-readi-am-scared

      and here

      https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/md-anderson-0

      MDA Dr.Glitza would be the place for treatment. I would be interested what the other doctors there have to say on the subject.

      Yes new information of this sort is very much a kick in the stomach. Although you can't change the diagnosis or the prognosis, you control what you do with the information and your time. Stay positive, make a conscious effort to not stress. Cry when you need and then enjoy what happiness you can. I understand from others that the IT-IL2 treatment that may be offered there is rough (less so than IV-IL2 ??) and continuous but some have done it with months and years of success. I hope it is successful for your husband if it is right for him and he chooses it and I also understand if he doesn't. 

      BRAF status?? Give it a try for some relief even if re-introduction, if appropriate.

      Above all live, love and enjoy each other and life. 

      Best wishes, Rob

      • January 13, 2017 at 6:10 am
      adriana cooper
      Participant

      Sorry he has joined this part of the club. I imagine he will likely be getting one or more lumbar punctures to test his CSF in order to make a definitive diagnosis. Please see my post here

      https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/please-readi-am-scared

      and here

      https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/md-anderson-0

      MDA Dr.Glitza would be the place for treatment. I would be interested what the other doctors there have to say on the subject.

      Yes new information of this sort is very much a kick in the stomach. Although you can't change the diagnosis or the prognosis, you control what you do with the information and your time. Stay positive, make a conscious effort to not stress. Cry when you need and then enjoy what happiness you can. I understand from others that the IT-IL2 treatment that may be offered there is rough (less so than IV-IL2 ??) and continuous but some have done it with months and years of success. I hope it is successful for your husband if it is right for him and he chooses it and I also understand if he doesn't. 

      BRAF status?? Give it a try for some relief even if re-introduction, if appropriate.

      Above all live, love and enjoy each other and life. 

      Best wishes, Rob

        • January 13, 2017 at 2:24 pm
        maperny
        Participant

        Thank you so much, Rob

        Juan is not BRAF positive unfortunately.

        We are waiting to hear back on next steps, will keep you posted.

        Your words of positivity are so helpful.

        Maria

        • January 13, 2017 at 2:24 pm
        maperny
        Participant

        Thank you so much, Rob

        Juan is not BRAF positive unfortunately.

        We are waiting to hear back on next steps, will keep you posted.

        Your words of positivity are so helpful.

        Maria

        • January 13, 2017 at 2:24 pm
        maperny
        Participant

        Thank you so much, Rob

        Juan is not BRAF positive unfortunately.

        We are waiting to hear back on next steps, will keep you posted.

        Your words of positivity are so helpful.

        Maria

      • January 13, 2017 at 3:17 pm
      Bubbles
      Participant

      So very sorry, Maria.  You two have been through so much. I can offer no additional advice other than echo the good information that Rob has given you.  Hang in there.  Celeste

      • January 13, 2017 at 3:17 pm
      Bubbles
      Participant

      So very sorry, Maria.  You two have been through so much. I can offer no additional advice other than echo the good information that Rob has given you.  Hang in there.  Celeste

      • January 13, 2017 at 3:17 pm
      Bubbles
      Participant

      So very sorry, Maria.  You two have been through so much. I can offer no additional advice other than echo the good information that Rob has given you.  Hang in there.  Celeste

      • January 13, 2017 at 4:36 pm
      Tim–MRF
      Guest

      Maria:

      I am sorry to hear this report. LMD and brain mets remain challenging, as you know. In December of 2015 the MRF hosted a summit on brain mets and LMD, bringing together experts from melanoma but also from breast cancer and the primary brain tumor field. This resulted in a publication that lays out the current best practices for treatment and the rational path forward for additional research. 

      The summit was chaired by Harriet Kluger of Yale and Mike Davies of MDA. Mike did the majority of the work on the paper. I say all of this to assure you that through MDA you have access to the best thinking and expertise around brain mets and LMD. Other places might be as good–and some are–but no-one is better.

      I have drafted a lay-language summary of the published paper. It is rather long and still somewhat complicated–needs another good round of editing. I am happy to send it to you if you are interested. Just drop me a note:  tturnham@melanoma.org

      Tim–MRF

       

       

        • January 13, 2017 at 6:14 pm
        Spl25
        Participant

        To Original Poster: Have you spoken to Dr. Davies at MDA about any possible (non-BRAF) targeted therapies?

        • January 13, 2017 at 7:20 pm
        maperny
        Participant

        Thanks for pointer, we will discuss with MDA.

        • January 13, 2017 at 7:20 pm
        maperny
        Participant

        Thanks for pointer, we will discuss with MDA.

        • January 13, 2017 at 7:20 pm
        maperny
        Participant

        Thanks for pointer, we will discuss with MDA.

        • January 13, 2017 at 6:14 pm
        Spl25
        Participant

        To Original Poster: Have you spoken to Dr. Davies at MDA about any possible (non-BRAF) targeted therapies?

        • January 13, 2017 at 6:14 pm
        Spl25
        Participant

        To Original Poster: Have you spoken to Dr. Davies at MDA about any possible (non-BRAF) targeted therapies?

        • January 13, 2017 at 7:20 pm
        maperny
        Participant

        Just emailed you, Tim.  Thanks

        • January 13, 2017 at 7:20 pm
        maperny
        Participant

        Just emailed you, Tim.  Thanks

        • January 13, 2017 at 7:20 pm
        maperny
        Participant

        Just emailed you, Tim.  Thanks

      • January 13, 2017 at 4:36 pm
      Tim–MRF
      Guest

      Maria:

      I am sorry to hear this report. LMD and brain mets remain challenging, as you know. In December of 2015 the MRF hosted a summit on brain mets and LMD, bringing together experts from melanoma but also from breast cancer and the primary brain tumor field. This resulted in a publication that lays out the current best practices for treatment and the rational path forward for additional research. 

      The summit was chaired by Harriet Kluger of Yale and Mike Davies of MDA. Mike did the majority of the work on the paper. I say all of this to assure you that through MDA you have access to the best thinking and expertise around brain mets and LMD. Other places might be as good–and some are–but no-one is better.

      I have drafted a lay-language summary of the published paper. It is rather long and still somewhat complicated–needs another good round of editing. I am happy to send it to you if you are interested. Just drop me a note:  tturnham@melanoma.org

      Tim–MRF

       

       

      • January 13, 2017 at 4:36 pm
      Tim–MRF
      Guest

      Maria:

      I am sorry to hear this report. LMD and brain mets remain challenging, as you know. In December of 2015 the MRF hosted a summit on brain mets and LMD, bringing together experts from melanoma but also from breast cancer and the primary brain tumor field. This resulted in a publication that lays out the current best practices for treatment and the rational path forward for additional research. 

      The summit was chaired by Harriet Kluger of Yale and Mike Davies of MDA. Mike did the majority of the work on the paper. I say all of this to assure you that through MDA you have access to the best thinking and expertise around brain mets and LMD. Other places might be as good–and some are–but no-one is better.

      I have drafted a lay-language summary of the published paper. It is rather long and still somewhat complicated–needs another good round of editing. I am happy to send it to you if you are interested. Just drop me a note:  tturnham@melanoma.org

      Tim–MRF

       

       

      • January 13, 2017 at 8:31 pm
      jbronicki
      Participant

      Hi Maria,

      So sorry you got such disappointing news.  I can't add to the great advice from the others but if you need anything at all feel free to reach out.  We are in Houston as well (I'm at UH and my husband is at Baylor) so please don't hesitate to ask for support.

      Many hugs,

      • January 13, 2017 at 8:31 pm
      jbronicki
      Participant

      Hi Maria,

      So sorry you got such disappointing news.  I can't add to the great advice from the others but if you need anything at all feel free to reach out.  We are in Houston as well (I'm at UH and my husband is at Baylor) so please don't hesitate to ask for support.

      Many hugs,

      • January 13, 2017 at 8:31 pm
      jbronicki
      Participant

      Hi Maria,

      So sorry you got such disappointing news.  I can't add to the great advice from the others but if you need anything at all feel free to reach out.  We are in Houston as well (I'm at UH and my husband is at Baylor) so please don't hesitate to ask for support.

      Many hugs,

      • January 14, 2017 at 4:42 am
      snow white
      Participant

      Oh goodness Maria.  My heart goes out to you.  I am so very sorry of these new findings. Thank goodness you are at the right place for the treatment of LMD.  Juan has been through so much and is such a fighter!  Please know that you are both in my thoughts and I wish you peace and comfort in this very difficult time.  Take care.

      Jen

      • January 14, 2017 at 4:42 am
      snow white
      Participant

      Oh goodness Maria.  My heart goes out to you.  I am so very sorry of these new findings. Thank goodness you are at the right place for the treatment of LMD.  Juan has been through so much and is such a fighter!  Please know that you are both in my thoughts and I wish you peace and comfort in this very difficult time.  Take care.

      Jen

      • January 14, 2017 at 4:42 am
      snow white
      Participant

      Oh goodness Maria.  My heart goes out to you.  I am so very sorry of these new findings. Thank goodness you are at the right place for the treatment of LMD.  Juan has been through so much and is such a fighter!  Please know that you are both in my thoughts and I wish you peace and comfort in this very difficult time.  Take care.

      Jen

      • January 14, 2017 at 9:08 pm
      _Paul_
      Participant

      Oh Maria,

      I am so sorry for this bad news. I am praying for you and your husband. I know these are only words, but hang in there. This community you are a part of is here to support you both.

      – Paul 

      • January 14, 2017 at 9:08 pm
      _Paul_
      Participant

      Oh Maria,

      I am so sorry for this bad news. I am praying for you and your husband. I know these are only words, but hang in there. This community you are a part of is here to support you both.

      – Paul 

      • January 14, 2017 at 9:08 pm
      _Paul_
      Participant

      Oh Maria,

      I am so sorry for this bad news. I am praying for you and your husband. I know these are only words, but hang in there. This community you are a part of is here to support you both.

      – Paul 

      • January 15, 2017 at 5:36 pm
      JoshF
      Participant

      Ugh!!! I'm sorry to hear this…just unbelievable. I'm so tired of this disease. Praying for the best!!!

      • January 15, 2017 at 5:36 pm
      JoshF
      Participant

      Ugh!!! I'm sorry to hear this…just unbelievable. I'm so tired of this disease. Praying for the best!!!

      • January 15, 2017 at 5:36 pm
      JoshF
      Participant

      Ugh!!! I'm sorry to hear this…just unbelievable. I'm so tired of this disease. Praying for the best!!!

Viewing 23 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.