MRF-Logo2019-Horizontal-RGB
New to this community
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.

New to this community

› Forums › Cutaneous Melanoma Community › New to this community

  • Post
    • February 17, 2019 at 9:19 pm
    SHERRY BOSSERMAN
    Participant

      Hi Everyone:

      My name is Sherry, I'm a 57 year old female with aggressive Stage III melanoma of the head and neck.  Of course I always have to be extra special, the cancer spread into my lymph nodes. 

      Very briefly the melanoma started as a clear pimple on top of my head, the doctors all thought it was basil cell carcinoma until the punch biopsy.  We were playing in a whole new league then.  I ended up having a 12 hour surgery, with a complimentary skin graft on my scalp, that was taken from my thigh.  Still did not get all the cancer.  Due to a MSSA infection from the first surgery, treatment was delayed for 9 weeks and the cancer that originally was trailing on the right side of my head, had now infected the lymph system on the left.  Immunotherapy of Yervoy/Opdivo was started.  I've had four rounds and aside from the hives I continue to get I've tolerated it well.

      I do have a few questions…has anyone else gotten hives?  If so, how do you manage the itching, I scratch in my sleep till I bleed.  Cortisone cream just doesn't work, and benadryl makes me feel like a zombie at work the next day.

      Also, after the first treatment, I developed a golf ball size lump in the front of my throat, it doesn't really hurt, but the area seems to be swollen slightly.  I've had my thryoid tested 3 times and it comes back fine.  No one seems to know what this is…a lymph node that's angry maybe?  Lymphadema?

      Any thoughts would be helpful.

       

    Viewing 0 reply threads
    • Replies
        • February 17, 2019 at 11:19 pm
        Gene_S
        Participant

          Hi Sherry,

          I am sorry you had to join this group but am happy to say that this is a very helpful group.

          I am the caregiver but my husband was the patient with melanoma.  His was also on his head and his doctor said it was basal cell at the worst but thought it was just a pylar cyst.  When the results came back it was indeed melanoma.  His original path was 10.5 lesion and Stage III,  His surger was a large grapefruit sized area on the back of his head on the left side with a skin graft from his thigh and his SN was negative. The only options back in 2008 was interferon and watch and wait.  He would not do interferon because it wasn't very helpful.

          After 3 more surgeries he became Stage IV with lesions on this cervical spine area at C1, C2 (unresectable) and in his liver and lungs with some Sub Q's in the area of the cervical spine lesion.  This was 2years and 8 months after the first surgery.  He was accepted into the clinical trial in March 2011 of Ipi 10 mg/kg infusions and GMCSF self injections daily.  We watched the Sub Q's disappear.  He became NED in July 2012 and has remained that way ever since.

          He also had the Ipi itch from the hives and his eye brows started turning white and he got vitiligo on his face and neck down to the collar bone.  His doctor said he believed that when the eye brows started turning white that he thought that mean the Ipi is working because he had heard of others getting this as well.

          He found nothing worked with the hives as topical didn't help and medicine that he took by mouth made him feel sluggish.

          I have one question for you are you seeing a melanoma oncologist?

          Weekends are a little slow but hopefully you will get more replies soon.

          If you want to read more about my husbands journey check out his profile.

          Judy the loving wife of Gene (Stage IV and now NED for over 6.5 years)

           

            • March 10, 2019 at 1:04 am
            SHERRY BOSSERMAN
            Participant

              Hi Judy:

              I am seeing an oncologist, but his specialty is not melanoma.  Unfortunately, we don't have one of those in York, PA.  When I ask about joining the hospitals support group for head and neck cancer they told me I was welcome, but it wouldn't help as everyone who went had throat or mouth cancer and all they talk about is feeding tubes.  angry

              I'm gathering by the way the oncologist and surgeon talk that there aren't others like me at this time.  They have presented my case locally to "cancer board" as well as in New York at a conference.  All the doctors are confering with my treatment at this time.

              I recently had a PET scan and the melanoma is not being seen in most of the areas, but there is still one area showing with a significant improvement.  The PET also showed an area on T7-10, but after an MRI turned out to be arthritis creeping in.  I'll take that over bone cancer any day.

              Thanks for responding to me…the itching is my biggest issue, and I'll take that over cancer any day.

              Best wishes to you and Gene both, I know it's as hard on you as it is him.

        Viewing 0 reply threads

        Tagged: 

        • 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