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Are we out of options?

Forums General Melanoma Community Are we out of options?

  • Post
    Jenny
    Participant
    My husband have melanoma that has spread to his brain. He has many mets, tog many to treat according to his oncologist. My husband was offered Temozolomid.
    He has tried immunotherapy, first pd-1, then ipi-nivo combo. He had a partial response, but could only have two combo treatments due to liver toxisity.
    They don’t offer radiation since there are too many mets, and they don’t want to give whole brain radiation due to limited effect and neurological decline.

    My husband has many symptoms and are on steroids to reduce swelling.

    He is braf wild type and there are no other known mutations.
    We are seing a melanoma specialist, but we also asked for a second opinion from another hospital, but i fear there is not much more they can do.

    Are there any experimental treatments that work in the brain once the mets give symptoms? TIL? Denditric cell vaccine? Any other?
    Do you know if there are any trials that might be open?
    We live in Europe, so I don’t know what our options are.

    I feel like I drowning…

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  • Replies
      Bubbles
      Participant
      I am sorry this is what you and your husband are up against –

      I don’t know if these trials would meet his needs or if they would accept him in his condition.  However, these are the trials that are actively recruiting in the UK:

      https://www.clinicaltrials.gov/ct2/results?cond=Stage+IV+Melanoma&term=&type=&rslt=&recrs=a&age_v=&gndr=&intr=&titles=&outc=&spons=&lead=&id=&cntry=GB&state=&city=&dist=&locn=&rsub=&strd_s=&strd_e=&prcd_s=&prcd_e=&sfpd_s=&sfpd_e=&rfpd_s=&rfpd_e=&lupd_s=&lupd_e=&sort=

      These are recruiting in France:  https://www.clinicaltrials.gov/ct2/results?cond=Stage+IV+Melanoma&term=&type=&rslt=&recrs=a&age_v=&gndr=&intr=&titles=&outc=&spons=&lead=&id=&cntry=FR&state=&city=&dist=&locn=&rsub=&strd_s=&strd_e=&prcd_s=&prcd_e=&sfpd_s=&sfpd_e=&rfpd_s=&rfpd_e=&lupd_s=&lupd_e=&sort=

      You can enter a different country in the search as you like.  The thing is – even if your husband doesn’t meet the listed inclusion criteria, but you are still interested in the treatment – CALL!!!  The doc and/or the institution will be listed.  You might find additional information.  You might find that he could be treated with the option you are interested in as a special case, even if he can’t be in the trial.  You might find entirely different options.  Or, you may find they have no additional treatment to offer.  Still – you will know you tried.

      Hope that helps.  Holding you both in my heart.  Celeste

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      Jenny
      Participant
      Thank you, Celeste, I will look at those trials, and see if they can accept him.

      Jenny

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      Juan Arias
      Participant
      https://www.clinicaltrials.gov/ct2/show/study/NCT04793737?cond=Melanoma+Stage+IV&cntry=SE&dist=300&draw=3&rank=2

      Check this out.
      Talk also with radiologist, their opinion is sometimes too much important because they have previous experience.

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      MelMel
      Participant

      Hi Jenny,

      I have a friend who has battled melanoma and has had gamma knife for brain mets only to end up with multiple mets two weeks after. At this point, they put her on heavy chemotherapy consisting of  Cisplatin, Vinblastin and Dacarbozine. She was hospitalized for six months after which she was fine and has been NED for brain mets for over three years. I know that they say standard chemotherapy does not work for melanoma but it did for her so maybe it is worth a try.

      Sending you good wishes and healing vibes.

      Melanie

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      JudiAU
      Participant
      Whole brain radiation remains an option. I would consider a second opinion. It can produce good results and not cause the kind of damage we all fear. I recall my radiologist says that as well. (I’ve had brain radiation in two spots. Tired. And some gray hair only. )

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      Rosiepup
      Participant
      Hi Jenny, I have just posted for help and advice myself on the forum. But I also saw your posts and am gobsmacked by how similar your husbands current situation is to mine!

      I was wondering how things are going for you both? Are you in the UK? I’m in Scotland. And if we could bounce information off each other?

      Thanks, Fiona

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      Jenny
      Participant
      Thank you all for your responses. Melanie, thank you for sharing your friends story. I’m glad she responded to chemo. I hope my husband will do as well. He has had the first round of temodar and for the next cycle, they will add carboplatin as well.
      <p style=”text-align: left;”>We spoke to his oncologist again today. My husband had an MRI scan done recently of his brain and spine. It showed that there were some mets in his spine as well. He will have radiation for the spine mets, but not for the ones in his brain.</p>
      I asked again about WBRT, but was told that the effect would be close to none and that side effects with memory loss was and cognitive impairment were likely to happen.

      Fiona, I’m sorry to hear that you are facing the same thing as my husband. We are in Sweden, but I would gladly bounce some information.

      // Jenny

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      Jenny
      Participant
      My sweet, wonderfull husband passed away last night.

      I can’t understand how it could go so fast. He was only stage 4 for 5 months…

      I just wish that we would have hade some more time.

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        Rosiepup
        Participant
        Oh Jenny I’m soo sorry to hear that. It does seem so quick! Was he not able to get any further treatments?

        Sending you lots of love and hugs 🥺💞💞

        fiona xxx

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      Bubbles
      Participant
      Dear Jenny,

      I am so terribly sorry for the loss of your husband.  Melanoma does not play fair.  He was blessed to have you in his corner.  May thoughts of him soon bring more smiles than tears.  Holding you in my heart.  Celeste

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      MelMel
      Participant
      Dear Jenny,

      I am so incredibly sorry for your sudden, unexpected and enormous loss. Life is incredibly unfair and all anyone ever has are just memories. Please find solace in the fact that you were privileged to know and share the mutual love and life since many never have that experience. Keep the precious memories alive and close to your heart.

      Hugs and more hugs,

      Melanie

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