Melanoma Stage 4 local recurrance

[missyrand]

Today I will accompany my husband for another wide excision of two new melanoma spots on his left leg. Once was removed in July with widely clean margins, and he continues on Keytruda (just had round 42). His PET scans are clear, so his major organs appear to still be protected, but I've advocated for a brain scan and anticipate getting the order for it today.

My husband has the "wild" melanoma type, and at this point we are beyond the science as to what to do next. We have outstanding first class care in the DC area, and will consult for a second opinon next week with Johns Hopkins. Trying to decide if we will continue with Keytruda, or switch to another immunologic, or add another in.

The Washington Post did a nice summary article about being aware that most doctors and ER's are not trained in managing folks in immune therapies like our loved ones are taking, and can make mistakes in diagnosis and treatment of side effects. I saw that one doctor give their patients a card stating they are in treatment for melanoma, taking ____ immununologic, and to please contact Dr. _____ if being seen so they can consult. I thought this a brilliant idea. Although we discuss this with every provider we see from regular eyecare specialist to internal medicine, they have not had the booster trainings to be able to discriminate what is going on that looks different/ or predictably due to the treatment protocol. Here is the article link: washingtonpost.com/national...

Peace folks. Missy

[Crycleo]

We went to Johns Hopkins and did not feel that we received the best of care. We were lost in the system. They are good, yes, and they have a great reputation, but they are too BIG to give personalized one on one attention. Hospital care--you will have to watch out for yourself. Biggest problem is NO COMMUNICATION between doctors and patients. Your doctor is not the one too take care of you if you are admitted. Someone you don't know is assigned to you, and if your case is very complicated, they don't know anything about it. I'd go there for a second opinion, but I would never be a patient there on the solid tumor unit where melanoma patients are admitted.

[missyrand Ambassador in reply to Crycleo]

Thanks for the experiential feedback Crycleo. We are consulting for a second opinion, but will continue our care with our provider in Virginia. I'm sorry you had such a trying experience. It's so hard just to be a supportive care provider and keep things moving, but when the system in which you interface is not smooth and collaborative, it does not leave one feeling confident.

missy