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cerebral edema

This topic has 3 replies, 2 voices, and was last updated 7 years, 8 months ago by marta010.

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- July 1, 2018 at 5:53 am
- Quote
opal2163
Participant

Hello everyone- I am new here and my dad was reciently diagnosed with melanoma in his left leg. It had spread to the lymphnodes and through the blood vessels but the Oncologist still believed it was treatable however agressive. He was admitted to the VA Hospital about 6 weeks ago due to abnormal swelling and brusing to his RIGHT leg which only had a small spot of melanoma in it. (No melanoma detected in the brain or other major organs on PET scan)

He started on 3 days of immunotherapy (vemurafenib) before suffering a total breakdown. Confussion, severe tremors, in and out of consciousness. after MUCH testing including two LPs and MRIs the Primary care team has said he has cerebreal edema. Infectious disease can find no infection anywhere and Oncology has said there were no cancer cells in the brain or spinal fluid.

We thought we were going to lose hin for sure this last week however he's still fighting and so are we. All the medical teams have flat out admitted they don't know what is causing the swelling in his brain. I thought maybe reaching out here would help to lead us to some answers.

My heart and prayers go out to every member of this forum. To those of you fighting this disease, those of us who love you fight it with you. and when you can't fight, we fight for you.

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- - July 1, 2018 at 5:48 pm
  - Quote
  marta010
  Participant
  
  Hi – my husband has a history of brain mets and has cerebral edema on 3 or 4 different occasions. He is usually treated with high dose steroids and has also had Avastin infusions after one incident. Most of his issues occurred after mets were treated with gamma knife radiation so his situation has a pretty definitive cause. Regardless of cause, the treatment with steroids is likely the way he’s being treated. My husband bounced back after each incident so keep the hope and faith! Take care.
  
  Ann
  - July 2, 2018 at 12:27 am
    
    Quote
    opal2163
    Participant
    
    Thanks so much Ann. They have offered no treatment options to combat the swelling. I’m thankful for the VA but I really feel they have failed us. I appreciate the tip on steroids and ask why they have not exploited it as a treatment. I pray all the best for you and your husband.
  - July 2, 2018 at 1:08 pm
    
    Quote
    marta010
    Participant
    
    I can't believe they're not treating the edema with steroids unless they think it will interfere with the immunotherapy…..regardless, the edema is the critical issue at the moment and steroids (dexamethasone) is what my husband has always been on for brain edema. Keeping you in our prayers.

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