Home Forums Melanoma Diagnosis: Stage IV New to the clinical trial arena

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  • #20813
    Laurielala55
    Participant

    Hello Everyone!

    My husband was diagnosed in April of 2012 with Stage IV with mets in his spleen and various places on his spine. He did Yervoy with no results and in fact showed some liver mets. He is now in a PD-1 at Sloan Kettering in NYC. He has had two infusions of the drug and after the first infusion had a fever a week later as well as a rash. A trip to the ER was uneventful as to the fever and the rash(never itchy) has disappeared. He is about to undergo back surgery for a disc problem that has been ongoing for the past year. He recently had a couple of MRI’s to determine whether his back pain and leg weakness are a result of cord compression. Thankfully it is not. The surgeon just ordered an MRI of his neck and there are a couple of lesions (spots) on a couple of cervical areas. Not sure if they are new or have been there.

    I am in contact with the clinical nurse that is involved with the drug trial. She certainly doesn’t answer some of my questions. Maybe someone here knows the answer to one in particular. Here goes…..In October before acceptance into the trial they did a bunch of blood work. At that time his LDH was in the 500 something range. The second round of blood tests showed it in the 700 something range. After the first infusion of the PD-1 that number dropped 72 points. I am thinking that is a good sign as that particular enzyme can be an indicator of cell damage. It is not specific to cancer but is sometimes used to show damage with metastatic cancer. The clinical nurse did not answer my question as to whether that was an indication that the drug may be doing something. My husband, a retired math teacher, reminded me that in mathematics it is not considered a trend until it happens 3 times in a row. Is anyone familiar with LDH? Might I just be overly optimistic? Certainly could use a bit of good news as there hasn’t been much since this journey has begun. I would appreciate any information/experience with how to ask the correct questions to the team involved with the trial. Just seems that they don’t want to share too much. Thanks in advance :)

    #57858
    Catherine Poole
    Keymaster

    Hello and welcome to our forum. There are lots of thoughts on this, but nothing overwhelmingly conclusive. I would say that yes, the dropping of the LDH was a good sign. But as I said the verdict really isn’t in as to whether this is a sure sign of a response or not. I like your husbands answer too. But I do hope it all goes well for him and he responds to this therapy. I have a feeling the nurse wasn’t sure. I would definitly ask the doctor in charge of the trial though.

    #57859
    Celeste Morris
    Participant

    LDH (lactate dehydrogenase) is normally present in the body in small amounts. It increases with tissue damage…whether from cancer, kidney and liver disease, or muscle trauma. Even a serious workout can elevate LDH levels briefly. LDH elevations occur with all sorts of cancer and therefore cannot be utilized to indicate the type of cancer present. When LDH is examined in regard to staging patients with melanoma, studies have shown that patients with increased levels of LDH have the worst prognosis. On the other hand, LDH levels are not very specific and are not a dependable indicator of the presence (or not) of metastatic disease. However, watching LDH levels can be a good way to monitor cancer therapy. Bottom line: LOW is GOOD!!!

    I’m glad your husband was able to get into an anti-PD1 trial. Always be sure to ask the doc any questions you have and wait for answers!!! I wish him well in that and his surgery. Keep in mind that tissue damage due to surgery can elevate LDH levels as well.

    Yours, C

    #57860
    Laurielala55
    Participant

    Thanks for your replies. I will question the doctors in detail next visit. Feeling overwhelmed as the caregiver.

    #57861
    Catherine Poole
    Keymaster

    Please go to our Caregiver Section for support. Being overwhelmed is normal and the folks there can give you the support you need. Let us know what the docs say. It sounds like you are a terrific caregiver by the way!

    #57862
    Laurielala55
    Participant

    Thank you Catherine for the vote of confidence! I will check out the caregiver section. The webinar today was interesting and very informative. Exciting news about the PD-1trials. My husband is fortunate to be able to be a part of the Merck trial.

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