Hubby’s appointment with new oncologist went…

…really, really well! (Warning: This will be a mini-novel…)

Oh what a relief it was walking into the office and making a fresh start! They had warned us that our initial visit could take up to 3 hours, which was music to our ears, personally.

As Don and I waited for the nurse practitioner to come in (we would get an hour with her and an hour with Dr. Lawrence), one of the nurses I had spoken to on the phone popped into the room and introduced herself and shook our hands and told us to call anytime if we had any questions.

…really, really well! (Warning: This will be a mini-novel…)

Oh what a relief it was walking into the office and making a fresh start! They had warned us that our initial visit could take up to 3 hours, which was music to our ears, personally.

As Don and I waited for the nurse practitioner to come in (we would get an hour with her and an hour with Dr. Lawrence), one of the nurses I had spoken to on the phone popped into the room and introduced herself and shook our hands and told us to call anytime if we had any questions.

The nurse practitioner Krista Rubin was extremely nice, very knowledgeable and very professional. As Don was going through his disease history with her, she was following along in his medical records, asking every once in a while, "That was Dr. X right?" or asked clarification questions. It was obvious she'd actually *read* his case file in advance (not so at our other first appointment).

Then she talked to us about the disease progression, had mentioned that it was highly unusual for a melanoma caught as early and was as thin as his was (.43mm… that's the first time I actually knew that information) to morph into what Don ended up with. She suggested the possibility of an earlier, unknown primary that his immune system had gotten to, and while it didn't affect anything with his current situation or treatment, it might help put to rest the "How did this happen?" feeling.

She looked Don over carefully from head to toe and then did it again with a black light, looking for depigmented spots that would support the earlier primary theory. She didn't find any, however, and had to conclude that probably it was the original spot that must have left behind a few cells deep in his epidermis that were missed in his WLE. Don't know why, but even though it didn't change anything, at least her trying to give us that information made us feel better. (This was the first time anyone looked him over with a black light also)

Then she asked us questions about whether we had kids, and then said at the next appointment, they would arrange for us to see the Social Worker they have on staff to help us help our kids deal with what was going on. She wanted to know if we had told the kids what was going on yet and what our interpretation of what was going on with Don's disease was. She said they like to make sure that the doctors and patient are on the same wavelength in their understanding. I think she was convinced pretty quickly that we had a good lay of the land in that regard.

She asked Don about his diet, how well he was sleeping, his pain management, all things that he had not been asked up to that point. Then she went out and after a few minutes she came back with Dr. Lawrence.

Dr. Lawrence was very personable and very pleasant. Again, it certainly felt like he had read up on our case in advance. He told us that he could only imagine the whirlwind we had been on in the last 2 months and how tough it must have been to get bad news every time we got more results back.

So he said he was going to start at the basics. He wanted to know about Don's eating habits, could he move bowels well, how well was the medicine managing his pain, was he having other health issues. Then he told us that they could manage Don's pain *much* better than it was currently and that they were going to get him on a better laxative to keep things moving better, so to speak. He asked Don if he was having any depressive issues, trouble sleeping, etc. because he wanted to treat the whole person, not just the cancer. He recommended a little Ativan for Don to take at bedtime just to help him sleep better.

So, then Dr. Lawrence, who knew we already knew all the bad news, started telling us what was *good* about Don's current situation: that once his pain was better managed, he would basically be considered asymptomatic, which meant that put him in a place where Don would have more treatment options, seeing that Don did not have any other health issues going on and had maintained his weight well, etc. He told us that the CNS involvement reported on the most recent MRI (spread to the sheath of the spinal cord) was a "soft call" and that after checking the scans himself, he didn't think it was an issue at this time, which meant he was not ineligible for the trials as we had been afraid of. He also said that Don only had minimal involvement of the liver and lungs, which was also good news, as well as there not being any mets in Don's brain. All of these things made Don's case less complicated to treat, he said.

Then he asked us if we had any questions or if we wanted him to go over the treatment plans. We said we'd like to hear the treatment plans and then we'd ask questions if we had any. (Hooray, treatment plans actually discussed!)

Dr. Lawrence said his first line of action would be to get Don into the BRAF/MEK trial if he turns out to be BRAF positive. Don's results should be ready in about a week, maybe less, and Dr. L wanted to wait for those because he felt that Don could be potentially very successful on it and that it had been shown to shrink tumors very quickly, which would preclude the need for radiation.

However, that being said, he wanted to get all the ducks in a row in case the test came back negative. So, he is having Don meet with a Radiology Oncologist that Dr. L thought very highly of in a satellite office closer to us (so if this is the route we take, we wouldn't have to travel to Boston for the treatments) to prepare for getting Don localized radiation treatments for his pelvic and right arm areas to keep the growth in check while he starts Ipi.

There was also talk as a plan B/C of trying to get Don on the Ipi/GM-CSF trial but that he would have to look into it to find out if short burst radiation treatments would be allowed on it or not.

Either way, as soon as we have the BRAF results back, there will be a plan in place that will immediately go into effect.

In the meantime, Don is to check in daily with the nurse practitioner regarding his pain levels and his bowel movements so they can tweak treatments/medications if needed.

Overall, a very satisfying experience. Everyone was kind and knowledgeable, and treated us like people. Every treatment that Dr. Lawrence recommended, he told us about length of effectiveness, side effects, etc. In other words, he kept it real but left us with a real sense of hope that treatments could still help Don.

Michelle, wife of Don, Stage IV