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.

Mycosis Fungoides/Sezary Syndrome

Forums General Melanoma Community Mycosis Fungoides/Sezary Syndrome

  • This topic is empty.
  • Post
    LLMoran
    Participant

    My husband has had this horrible (whole body rash) since just before X-Mas.  He has seen 3 different Dr's in Tucson, AZ.  He has now seen another dermatologist (PA) in Sierra Vista, AZ.  Now his Primary has referred him to yet another dermatologist in SV, AZ.  It takes a month to month and a half to get in and see each new Dr.  This rash is driving him crazy.  He is weak, has no energy, has lost his appetite and lost c. 30 pounds since the beginning of the year.  We spent c. 3 hrs in town several days ago and he was in bed for 2 days.  So far the Dr's only seem to be trying to treat him topically.  No one has looked to see if it could be systemic.  This next Dr. is supposed to be able to do that.  His blood tests are not significantly off.  His RDW (sd) is 58.7 Range 38-49 and his RDW (cv) is 16.5 Range 11-15.  His segmented neutrophils are 79.1, no range given and, his LDH is 300.  Results of the LDH from 2011 forward have bounced around with 275 the highest reading till now.  In 2016 it was 225, in 2017-244, 2018-300 with a range of 112-245 given.  I realize those figures in and of themselves are not particularly alarming but am wondering if those results along with his symptoms could be indicative of Mycosis Fungoides or Sezary Syndrome, or something else just as scary.  Any input from anyone would be most appreciated.  Thank you.  PS.  Dr. P. will be seeing him tomorrow ( 06-14-2018).  Any input would still be appreciated.  By the way, he has a history of melanoma and mononucleosis (I believe the noncontagious type).

     

  • 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