Metastatic Melanoma Stage 4
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.

Metastatic Melanoma Stage 4

› Forums › General Melanoma Community › Metastatic Melanoma Stage 4

  • Post
    • February 21, 2014 at 2:47 pm
    suzette12
    Participant

    Hello,

    My husband was diagnosed in November of having stage four Metastatic Melanoma. A very small spot found on his left lower lung and a lesion on his spine.  The spot on his lung was sent for a biopsy  but it was so small that they cannot determine if he carries a melanoma gene.   He is now on Yervoy treatment.  He has had two infusions and is having terrible side effects.  In fact, they had to cancel his third infusion this week because of his side effects (swelling in the ribs-supposedly caused by an increase in the growth of the lung tumor which is attaching to nerve endings), eye irritation and rash).  His pain is over the top.  No plan to remove the tumor, they simply put him on a steroid to decrease the swelling.  Can anyone relate with these side effects and are they normal?  We live in a small town with very little experience of this disease and Yervoy treatment.

    Any advice would be a blessing.  I'm very scared for him (us).

    Thanks.

Viewing 2 reply threads
  • Replies
      • February 21, 2014 at 3:07 pm
      jmmm
      Participant

      The explanation sounds plausible, but please, please get to larger cancer center with a melanoma specialist!  Get there as fast as you can and do not wait.  Yervoy and the other new melanoma drugs are new.  The side effects are numerous, dangerous, and can be deadly if the doctor is not familiar with them.  Your husband is fighting for his life and you need the most qualified doctors working with you in this fight.

      • February 21, 2014 at 3:07 pm
      jmmm
      Participant

      The explanation sounds plausible, but please, please get to larger cancer center with a melanoma specialist!  Get there as fast as you can and do not wait.  Yervoy and the other new melanoma drugs are new.  The side effects are numerous, dangerous, and can be deadly if the doctor is not familiar with them.  Your husband is fighting for his life and you need the most qualified doctors working with you in this fight.

      • February 21, 2014 at 3:07 pm
      jmmm
      Participant

      The explanation sounds plausible, but please, please get to larger cancer center with a melanoma specialist!  Get there as fast as you can and do not wait.  Yervoy and the other new melanoma drugs are new.  The side effects are numerous, dangerous, and can be deadly if the doctor is not familiar with them.  Your husband is fighting for his life and you need the most qualified doctors working with you in this fight.

        • February 21, 2014 at 4:58 pm
        arthurjedi007
        Participant

        Yes. Get to a good melanoma place immediately.

        Also before each dose they should have been doing blood work carefully checking his numbers to ensure it is ok for the dose. I always got my copy so I could check it myself too.

        Also was it just a MRI that spotted those 2 spots or did they do a PET? If they did not do a PET then he probably has more spots. If they did a PET then it sounds like they have done good so far.

        Yervoy is good but the staff needs to be experienced. Also they told me to call if any side affect lasted more than 24 hours so they could get right to treating it.

        Basically the steroids is to try to tone down the immune response ipi is possibly having. At least that is what they told me if I started having issues like for colitis and things which I didn't but I wanted to know up front what they would do if I did.

        • February 21, 2014 at 4:58 pm
        arthurjedi007
        Participant

        Yes. Get to a good melanoma place immediately.

        Also before each dose they should have been doing blood work carefully checking his numbers to ensure it is ok for the dose. I always got my copy so I could check it myself too.

        Also was it just a MRI that spotted those 2 spots or did they do a PET? If they did not do a PET then he probably has more spots. If they did a PET then it sounds like they have done good so far.

        Yervoy is good but the staff needs to be experienced. Also they told me to call if any side affect lasted more than 24 hours so they could get right to treating it.

        Basically the steroids is to try to tone down the immune response ipi is possibly having. At least that is what they told me if I started having issues like for colitis and things which I didn't but I wanted to know up front what they would do if I did.

        • February 21, 2014 at 4:58 pm
        arthurjedi007
        Participant

        Yes. Get to a good melanoma place immediately.

        Also before each dose they should have been doing blood work carefully checking his numbers to ensure it is ok for the dose. I always got my copy so I could check it myself too.

        Also was it just a MRI that spotted those 2 spots or did they do a PET? If they did not do a PET then he probably has more spots. If they did a PET then it sounds like they have done good so far.

        Yervoy is good but the staff needs to be experienced. Also they told me to call if any side affect lasted more than 24 hours so they could get right to treating it.

        Basically the steroids is to try to tone down the immune response ipi is possibly having. At least that is what they told me if I started having issues like for colitis and things which I didn't but I wanted to know up front what they would do if I did.

        • February 21, 2014 at 6:11 pm
        suzette12
        Participant

        No. Never a PET scan.  I thought that was kindof odd?  I've called Boston today and we have a plan to follow-up on all of his issues.  I'm only hoping that it is in time.

        • February 21, 2014 at 6:11 pm
        suzette12
        Participant

        No. Never a PET scan.  I thought that was kindof odd?  I've called Boston today and we have a plan to follow-up on all of his issues.  I'm only hoping that it is in time.

        • February 21, 2014 at 6:11 pm
        suzette12
        Participant

        No. Never a PET scan.  I thought that was kindof odd?  I've called Boston today and we have a plan to follow-up on all of his issues.  I'm only hoping that it is in time.

Viewing 2 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.

Popular Topics