We had our last visit with Dr. Convit yesterday, and Robert no longer needs to keep his skin graft covered. There is still a scab over a small portion of the graft, but Dr. Convit said it should fall off naturally. It's OK to wash his head in luke-warm water and to shampoo the entire site (hair or no hair ...). No more bandages. No more Nurse Ratched! Yay for me! Progress for Roberet indeed!
I will miss our periodic visits with the plastic surgeon because he has been the most encouraging and upbeat member of the team we have seen at Washington Hospital Center. But I'm glad we are moving on to what's next ...
Our trip to the University of Pennsylvania was valuable in two ways. We got a good synopsis of Robert’s melanoma – what’s positive, what’s negative, what’s the bottom line. And, we got a run-down of all the options for treatment, including some we hadn’t heard about before. We have one more piece of information to put into the mix, and then we’ll be ready to decide what’s next.
A recent post on the Melanoma Research Foundation’s community list made me sad, mad, and – very thankful for you all. The writer, a newcomer to the community, was venting her frustration at her siblings’ lack of understanding that she is facing a very serious situation – newly diagnosed, recurring melanoma. She wrote: “It is so defeating to know that there will always be a 'next time' for surgery, and stitches, and co-pays. And there will always be another social expectation of a sunny beach get together.”
The understanding from our families and friends – the outpouring of concern, favors small and large, visits, cards, and phone calls – has been so important to us!
As more people in our wider circle of friends find out about Robert’s melanoma, I’m getting questions about the disease that our inner circle (family and closest friends) didn’t need to ask. That’s because we told them from the beginning that Robert’s diagnosis in the first pathology report was metastatic melanoma. Since we know now that as of June 18 his status was “no evidence of disease” (NED), a factor some newcomers know when they first learn of his illness, I am frequently encountering this reaction: “That’s really good, right? So he can just go on with his life and it’s not likely to come back?”
I can’t find fault with anyone whose initial reaction is just that. Most melanoma patients (about 70%) have superficial spreading cutaneous melanoma, and the long-term prognosis for that type is very good if caught before it has a chance to spread beyond its primary site. Five- and 10-year survival rates are sometimes cited as high as 100% for “melanoma in situ.” Although many people know that the prevalence of skin cancer has been growing at an alarming rate, many also understand that skin cancer is most often curable. As one patient put it, “I thought ... they would cut it out and that would be the end of it.”
Before 2000, melanoma cases like Robert’s – those that didn’t show up on the outside of the skin – generally were considered to be metastatic melanomas of unknown primary origin. Now, melanoma specialists recognize a subtype they call “primary dermal melanoma” (PDM). There’s not much recent information available on the web about PDM – here’s my synopsis of what’s there.
Good news from Dr. Convit today - we can plan to go on vacation! We need to go back to see him next week, and by then he should be ready to cut us loose. Now all we have to do is figure out where/when to go.
The skin graft is mostly healed now, and the stubborn patch is beginning to close up since we started putting silver sulfadiazine on it (instead of bacitracyn) last week. The graft donor site is healed and just needs to be softened with some skin lotion. As of today Robert is cleared to drive, and after one more week he can get back on his bike.
Not surprisingly, we got a different perspective on the melanoma vaccine trials when we consulted with Dr. Sharfman at Johns Hopkins yesterday. We haven’t decided yet whether Robert will enter the trial, but it no longer sounds like such a bad option.
As we near the time for our visit with Dr. Sharfman at Johns Hopkins next Monday afternoon, we are trying to clarify our thoughts and figure out what questions and information gaps we need to address before decision-time. I hope writing this blog post will help me do some of that on my own. I’ll start with a synopsis.
I haven't had much to say over the last 10 days - we are still waiting for the appointment at Hopkins, and with Allison et al. visiting I haven't taken time to concentrate on melanoma. That was a welcome relief! But it doesn't mean nothing's been happening ... so here's an update.
Robert explained early on, after meeting with one of the top melanoma experts in the country, that it probably will be impossible to stage his melanoma. Here’s the problem with that: treatments are generally decided depending on the stage of the disease. So, how do they know which path of treatment is the best for him? Welcome to Limboland!
