Home Forums Melanoma Diagnosis: Stage IV Zelboraf patient update

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  • #22040
    Dick_K
    Participant

    I have not posted my status in a while but I do check in almost daily.

    I started in a phase 2 clinical trial for what would be called Zelboraf in March 2010 and I am now approaching the end of my 52nd month on it.

    My scans still show two mets in my lung. Are they dead cells? Are they scar tissue? I don’t know but they have not changed in size since February 2012 and stopped lighting up on a PET/CT scan in December 2010. My side effects have pretty much been reduced to some rash, leg/ foot discomfort, and photosensitivity.

    I continue being treated at the Perlmutter Cancer Center at NYU Langone Medical Center in New York City by Dr. Anna Pavlick. A month ago I transitioned out of the phase 2 trial and moved into a phase 4 trial. For now my follow-up appointments have been set at every four weeks but hopefully that will change soon to every eight weeks. BUT, the good news about moving to the phase 4 trial is that my scan frequency has changed from every 12 weeks to every 20 weeks. (My wife will no longer be able to use me as a night light.)

    #64721
    Catherine Poole
    Keymaster

    Guess your wife will have to stop her nighttime travels! Such wonderful news from a great person who has helped so many others by sharing your story.

    #64722
    Bethany
    Participant

    Hi Dick my name is Bethany,

    I just joined this site and am so excited by your post! Congratulations! To know that you have been on Zelboraf for 52 months is so encouraging. I began this journey with cancer January 2013 with stage 3 melanoma. I have a rare non-pigmented melanoma. The originated spot is listed as unspecific but my oncologist and both surgeons believe it is from a spot on my lower back it can not be proved. Both times the place had been removed it came back as pre-melanoma. My oncologist even had them pulled and tested by a different lab and the results came back the same. Anyway it spread to my lymph nodes in my left groin. Three out of four removed were cancerous but they couldn’t find it anywhere in my body. I began Sylatron in April 2013. I had my next CT scan in October which showed a small spot on my left lung but it was too small to biopsy and my doctor thought it to be a noncancerous node.

    This past March I got to where it hurt to walk and I struggled to breath. This CT scan showed that it had metastasized to my pelvic bone, liver, both lungs, left shoulder blade, and I had two subcutaneous tumors. I went down hill fast and was almost dead but Zelboraf was a miracle drug to me. Within my first month I could walk again and went off all pain meds. My CT scan the end of May showed my lungs and liver almost completely cleared! However, I was told that most people have the BRAF gene mutate again or somehow be able to signal the cancer to begin growing somewhere between 2-21 months of beginning treatment. For you to be 52 months is awesome! You just made my day! Now if I can just my energy levels back.

    Thanks for your post!

    Beth

    #64723
    Annieo
    Participant

    Hi Dick,

    Thanks for posting your update. It is lovely to hear positive stories. Best of luck to you for the future, and best of luck to Bethany too :)

    I am going for pet scans at the end of this month. I have had a few recurrences in my leg since December. Twice, since March last, I have been told to prepare to start Ipi, then later told no, we will hold off on it for another while.

    Despite my frequent recurrences, pet scans have never picked up any other activity. I also suffer from Rheumatoid Arthritis and my oncologist seems to have a lot of concern around the effects Ipi will have on my quality of life. Also, he would prefer to have something show on a pet scan that he can track while I am on ipi. My dermatologist is not too sure about that decision, and will be pushing to revisit the discussion, whether or not there is any activity detected on my next pet scan.

    Meanwhile, I am happy to enjoy the beautiful weather here in Ireland (surprisingly no rain!) for another week or two while I wait for my scans.

    Your message has lifted my spirits Dick. Things might be ok in time. For me, it’s the not knowing what’s happening with the melanoma in my body that is the most challenging. Though, the waiting around to take action is possibly as bad !

    Take care,

    Anne :)

    #64724
    Terry
    Participant

    Always good to here you are doing well Dick. I have been on Zelboraf since December of 2011. Like you most of the side effects have diminished .Mostly foot and some hand pain now. I think I had almost all the side effects at one time.

    #64725
    tamie
    Participant

    Dick, Beth and others,

    So good to hear good news.

    My husband is on Zelboraf for a year . It works good only side effects on legs are terrible.

    We are now checking alternative but also remember that the most important thing is how helpfull it is for his Mets, so are not yet sure if we change medication.

    when we started this journey and I was frightened by the percentage of survival a friend of mine told me that percentage are for doctors. For us – patients – it is 100% and she is right. Many things make the changes for us, and it is not always what we find in scientific articles. So – you Dick are a symbol of success and we wish to be able to stay thast olong on Zel . Keep thgis good way

    Tammie

    #64726
    tamie
    Participant

    Dick, Beth and others,

    So good to hear good news.

    My husband is on Zelboraf for a year . It works good only side effects on legs are terrible.

    We are now checking alternative but also remember that the most important thing is how helpfull it is for his Mets, so are not yet sure if we change medication.

    when we started this journey and I was frightened by the percentage of survival a friend of mine told me that percentage are for doctors. For us – patients – it is 100% and she is right. Many things make the changes for us, and it is not always what we find in scientific articles. So – you Dick are a symbol of success and we wish to be able to stay thast olong on Zel . Keep thgis good way

    Tammie

    #64727
    tamie
    Participant

    Dick, Beth and others,

    So good to hear good news.

    My husband is on Zelboraf for a year . It works good only side effects on legs are terrible.

    We are now checking alternative but also remember that the most important thing is how helpfull it is for his Mets, so are not yet sure if we change medication.

    when we started this journey and I was frightened by the percentage of survival a friend of mine told me that percentage are for doctors. For us – patients – it is 100% and she is right. Many things make the changes for us, and it is not always what we find in scientific articles. So – you Dick are a symbol of success and we wish to be able to stay thast olong on Zel . Keep thgis good way

    Tammie

    #64728
    tamie
    Participant

    Dick, Beth and others,

    So good to hear good news.

    My husband is on Zelboraf for a year . It works good only side effects on legs are terrible.

    We are now checking alternative but also remember that the most important thing is how helpfull it is for his Mets, so are not yet sure if we change medication.

    when we started this journey and I was frightened by the percentage of survival a friend of mine told me that percentage are for doctors. For us – patients – it is 100% and she is right. Many things make the changes for us, and it is not always what we find in scientific articles. So – you Dick are a symbol of success and we wish to be able to stay thast olong on Zel . Keep thgis good way

    Tammie

    #64729
    Catherine Poole
    Keymaster
    #64730
    endure9310
    Participant

    Hi Dick,

    Always glad to hear your doing well. Thanks for the updates as you make us all aware of the possibilities with zelboraf. I’ve been on it 33 months and the side effects are minimal.

    Feel very fortunate to have found this web site as it can be a relief to hear how others are doing and the new medicines available. Thank you Catherine! That video was great guys!

    Bruce Davis

    #64731
    NaomiS
    Participant

    Thanks Dick.

    Your survival is welcomed encouragement for all of us newly diagnosed. Long may it continue.

    And I love your humour!

    Naomi

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