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.
I am a 41 year old healthy female that was recently diagnosed with desmoplastic melanoma. The sun damage melanoma and most cases are in the neck and face. It started as a freckle on my upper lip and grew in size and the color was getting darker. I had 2 shave biopsy (nov ’17) and (jan ’18) because the freckle reappeared. The recent punch biopsy (april ’19) was diagnosed as: atypical compound melanocytic proliferation, favored desmoplastic type, Clark level IV, 1.8 mm in depth, extending to peripheral edge and deep base of biopsy. My dermatologist immediately sent me to Moffit, Tampa, FL and I am going to have surgery/reconstruction, but prior they are going to put me through a clinical study testing MK-3475 (pembrolizumab) I guess the same as Keytruda, for three cycles (9 weeks). The goal is to shrink the tumor prior for surgery.
I am scheduled for diagnoses CT scan July 10, and will start treatment after. I have read some of the side affects just curious what others are experiencing with the drug and if anyone else is doing the clinical for similar diagnoses.
Many here have taken all of these drugs as adjuvant (after radiation or surgical removal of tumors) and with active disease. The new ta-dah in melanoma is “neo-adjuvant” treatment. Exactly what your docs have proposed for you. Which is taking the med before surgical removal, both to shrink the lesion and to train the immune system. Basically, in melanoma we have three methods of attacking melanoma with medicine. The immunotherapies noted above. Targeted therapy (a combination of a BRAF inhibitor and a MEK inhibitor) if the lesions are BRAF positive. Or intralesional treatments that are injected into the tumor directly. Immunotherapy is recognized to work well but more slowly. Targeted therapy is known to work rapidly, though later tumors can learn to “work around” the effect. (All of this is covered in the primer.) Both targeted and immunotherapy are being tried as neo-adjuvants. Here are some reports:
Since targeted therapy is known to act much more rapidly, I would make sure that my lesion was tested for BRAF status and if it was positive, I would ask the docs why they are recommending immunotherapy rather than a BRAF/MEK combo. (Though you may have already worked through this.)
Hope this helps. You can use the search bubble here to look for folks who are utilizing neoadjuvant treatment….though it is relatively new in melanoma world. Hope this helps. Celeste
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.