Advice for the newly diagnosed with medical family members

This morning a newly diagnosed melanoma patient posted a query on the Melanoma Research Foundations’ Melanoma Patients Information Page seeking advice on how to deal with all the new information she was learning about melanoma – sentinel nodes, wide local excision, micrometastases, Stage 3, 5-year prognosis, complete lymph node dissection, lymphedema. Her story was full of information she got from her brother, an oncologist but not a melanoma specialist, and her father, an orthopedic surgeon.

Her statement that all the statistics meant nothing to her at this point prompted me to reply. I’m cross-posting my response to her here. If you follow MPIP you can skip the rest.

Signs of recovery

Which of the following would you agree with?

a)      I’m retired
b)      I’m busy
c)      I’m overcommitted
d)      all of the above

If you guessed d), you got that right! This post talks about what that means.

A post-vacation high

Amazing, what a real vacation can do for the spirit! Despite two weeks of travel out west and now a short trip to Asheville via GSP (where there are nonstops and affordable fares, even considering the rental car) I am relaxed, resting and writing at the Comfort Inn while waiting for Gabriel to nap before I pick him up from school. I feel as though I've taken a turn in the road, and I'm ready to get on with things.

A brief update on the GVAX trial – and what’s next?

Dr. Lipson told us today that the final subject in the Phase 1 GVAX melanoma vaccine trial that Robert went through at Johns Hopkins was enrolled two weeks ago. Around the end of the year or early in 2014, the researchers will have all the data from the study and will begin to write a report that they hope will be published in the middle of next year.

Don’t worry! Be happy!

But that’s hard to do, coming up on scans and a visit with Robert’s oncologist in two weeks. I’ve written before about scanxiety, so I won’t repeat that here – nothing has changed, and from reading posts by others on the Melanoma Patients Information Page sponsored by the Melanoma Research Foundation, we are far from alone in this.

This month, though, we had another reason to be anxious. Robert’s dermatologist last week removed a “freckle” from the back of his leg that I’ve been eyeing for more than six months. He did a shave biopsy of it, and today the results came back: it was a benign keratosis. Whew!

Some thoughts about clinical trials

There’s an interesting article from the New York Times yesterday about whether clinical trials work – not just melanoma trials, but trials of new treatments for all kinds of conditions. My reading of many posts on the Melanoma Resource Foundation’s Patient Information Page (MPIP) over the last year has led me to contemplate this subject. Here’s what I think about it.


Dr. Lipson called as we were checking into the hotel this afternoon to say that he had two radiologists that he trusts look at all the scans and they didn't find anything to worry about. That means Robert has "no evidence of disease" and I'll dance with N.E.D. at Sandy's wedding on Sunday.

A delayed date with N.E.D. – but no news is good news

Before we left Johns Hopkins Hospital this morning I thought we might actually have some results to report today – but alas, it was not to be. The fellow who made up the CD of Robert’s brain MRI said that if we waited about 10 minutes, he could print out the report for us. Our wait was a lot longer – and then he came and said the doctor hadn’t signed off on the report yet. It was lunch time, and he didn’t want to keep us waiting.

Bummer! But even so, I came home without the anxiety I’ve been carrying around – despite the screw-ups that make me want to take back some of the good things I’ve said before about Hopkins.

Some background on melanoma treatments

For me, moving on from Robert’s active fight against melanoma Stage IIB into the nerve-wracking “watchful waiting” phase means keeping up-to-date on the latest research into therapies in use or under study for patients with more advanced disease. I’ll share some of what I’ve learned so far, and then I’ll try to keep you informed when I learn something new.

To understand how researchers are trying to fight melanoma, first you need to understand what cancer is. I’ll start with a short primer; click here to jump to the next section if you want to skip it.


Subscribe to melanoma