← Return to Adult Langerhans cell Histiocytosis and CMML

Discussion
Comment receiving replies
@colleenyoung

Hi Christina, welcome. You are wise to seek a second opinion from an institution with experience in rare cancers, like Mayo Clinic or a cancer center of excellence. To get a second opinion from a doctor at Mayo Clinic who is experienced with this disorder, here is a link to more information about requesting an appointment http://mayocl.in/1mtmR63.

How is your boyfriend feeling?

Jump to this post


Replies to "Hi Christina, welcome. You are wise to seek a second opinion from an institution with experience..."

Actually he is feeling very good. This all started with an severe all over itch. We have seen a dermatologist, hematologist, a urologist, an allergist. He has had numerous blood draws, a bone marrow biopsy, a lymph node biopsy, a skin biopsy etc. Along the way he was also diagnosed with Alpha Gal from a tick bite. He has since avoided red meat and pork and the itch has gone away. Since the itch was his biggest issue he is back to his old self and feeling great. Which furthermore confuses us on the diagnosis and treatment. I have read that Langerhans has still not been determined if it is a cancer or a blood disorder, but yet they want to treat it with 12 months of Chemo therapy. That seems like a bit much to me. If they aren't sure if it is a cancer, then why Chemo? Are we killing cancer or suppressing the immune system? If we are suppressing the immune system, are there not other things that do that besides chemo? I have also read that this is more common in children, however many children do not need treatment, that it goes away on its own or they outgrow it. So if that is the case in children then what changes when you are an adult? We just want to make sure that he actually has LCH, and that this is the correct treatment for it. Thank you for your reply and I am sure we will be reaching out to Mayo Clinic in the near future for a second opinion. What do we need to do to get started? Can we send all of the test results over to be reviewed before we make an appointment or does the appointment need to come first? Thank You