Category: Blog

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!

In particular:

Some of you have come from afar to visit, and one of you gave up all her vacation to be here.

All of you have been so restrained about calling us or expecting us to call you with every bit of news. We really appreciate not having to go over everything one more time when you can read the details here. That also leaves the phone time for important questions we didn’t think of – and just for keeping us in the loop about what’s going on with you.

Some of you have plied us with comfort food and sweets – so sweet!

One of you has spent many hours with me/us when I’m sure you had other things you would rather do.

Some of you don’t believe in this, but I do: I feel positive energy coming our way.
I can’t imagine dealing  with insensitivity from any of you while also going through this stressful time. Thank you all, from the bottom of my heart!
[Drumroll …]
And now, the biggest understanding is yet to come!
We are going to the beach …
This should not be a big surprise to those of you who know Robert well. He will not be held down. He will, for sure, slather with sunscreen of adequate SPF; wear a hat; cover up as much as possible and still enjoy himself; and limit the time we spend in the sun.
I understand completely why some – perhaps most – melanoma patients become sun-shy. We have considered all the factors at play here, and unless someone tells us not to, we will not stay indoors. We will hike and walk (and Robert will bike) to enjoy the beauties of the natural world. We will work our bodies and strengthen our muscles. We will breathe fresh air and suck in the smell of the ocean.
And we will be careful! That’s a promise …

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.”

Cancer prognosis is often discussed in relation to the stage of the disease, and as our family and close friends know, Robert’s case has been difficult to stage. At one point we understood the doctors at Washington Hospital Center to say that they were treating his case as melanoma in situ because there was no evidence of spread – the sentinel node biopsies and PET/CT scans showed no evidence of disease. That’s where you see the 100% survival rates. But that’s not the end of our story.
In staging melanoma to come up with treatment options and prognosis, melanoma experts also consider two measures of invasion into the immediate area – one called a “Clark level” and the other known as “Breslow thickness.” The Clark level measures the level of the skin that the melanoma has invaded – how deep did it go? The Breslow thickness is measured from the top of the tumor to its lowest point. Under the most recent cancer staging guidelines, the Clark level is only considered when staging tumors up to 1 mm thick. Generally, the thickness is a more accurate measure to consider when trying to come up with a prognosis for bigger tumors.
Because the lesion removed by the dermatologist in April was thought to be a sebaceous cyst, the skin was not removed at that time, making the depth and thickness difficult to measure. The original pathology report had no measurements – in fact, it included almost no information, other than the dreaded diagnosis of metastatic melanoma, and one of our doctors called it “pathetic.” After the tissues were sent to the dermatopathology lab at Boston University, we got our first indication of how thick the lesion was – 9.5mm. The recent report from Stanford University added one more piece of information – the tumor was centered in the “mid reticular dermis,” and the Clark level is IV or V.
Among the questions we will ask tomorrow is one about the depth. With a tumor this thick it’s not surprising that it was in the deepest level, the reticular dermis. My question is, how much of the thickness was on the outside? The cyst itself was raised, perhaps 1/8 to 1/4 inch, and then there was a dome extending upward from part of it. If that is the section they measured, it’s possible that most of the 9.5mm were on the outside.
More from the Stanford report
The Stanford report did not have the diagnosis I was hoping for – primary dermal melanoma. The dermatopathologists there believe their immunohistochemistry rules out PDM. Instead, they favor a diagnosis of primary nodular melanoma with regression. Nodular melanoma is not the best possible diagnosis – it is the most aggressive type of melanoma.
There is much more detail in the Stanford report, including lots that my superficial research doesn’t help me understand. We’ll ask Dr. Schuchter (at University of Pennsylvania) about them tomorrow, and when I can provide a reasonable explanation, I’ll write about anything important.
Meanwhile, we’re sticking with the most important positive factor: NED! The sentinel node biopsies and PET/CT scan done in June found no evidence of cancer. Patients with nodular melanoma who have no lymph node involvement have a much better prognosis than those whose cancer has spread. It’s not the 100% you hear about, but we’ll take what we can get!

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.

Primary dermal melanoma cases have some common threads:
·        there was no evidence of melanoma or abnormal pigmentation on the outer layer of the skin;
·        clinical tests, including skin examinations with ultraviolet light, PET/CT scans, and sentinel node biopsies, found no evidence of melanoma elsewhere on/in the body;
·        the lesions tended to be very deep; and
·        patients whose cancers were characterized as PDM had “remarkably prolonged survival” compared with metastatic or nodular melanomas of similar thickness.
That last bit sounds good to me! But apparently, not all melanoma cases with the first three characteristics noted above fall into that category.
The first report I found on a group of patients with melanomas not evident on the outer skin layer that did not appear to come from another site (i.e., metastasize) covered 11 patients. University of Michigan researchers reporting on this group in 2000 postulated that these cases were not metastases of melanomas of unknown primary origin, dubbed them “primary dermal melanoma,” and noted that they had an unusually high survival rate.
Another group, seven patients, classified as having PDM was reported in 2004 in an article by Dr. Susan Swetter (et al.) of Stanford University. This article noted that, under staging guidelines then in use, these cases would be considered Stage IV, metastatic melanomas of unknown primary origin. Other patients at that stage had a five-year survival rate of 19%, but the seven PDM patients then being followed at Stanford were all alive after up to five years of follow-up (mean, 41 months), which the report characterized as “markedly better than what would be expected” for a primary melanoma that deep or for a metastatic melanoma of unknown primary origin.
By 2008, the Stanford study cohort had grown to 13 cases. In these cases the mean thickness of the melanoma was 9.6 mm – about the same as Robert’s, 9.5 mm, which Dr. Sharfman has told us makes Robert’s case “high-risk.” Although the survival rate for PDM had begun to come down by then, it was still unusually high at 92% after a mean follow-up duration of 44 months.
The Stanford researchers’ 2008 report noted that they had found lower levels of staining for some proteins than they found in metastatic and nodular melanoma. This shows that the body of information about PDM had grown by 2008 to the point where some researchers believed they had found some markers for it in their immunohistochemistry studies. That’s why we were happy to hear that the team at Washington Hospital Center had Robert’s slides sent to Stanford for comparison with their identified cases. No answer yet – but we will follow up with Drs. Jang and Venna soon.
Even without knowing those results, we have reason for optimism. The importance of measuring the thickness (depth) of melanomas was highlighted in a 2009 World Journal of Surgery article reporting that 65% of patients with melanomas that were thicker than 4 mm had lymph node involvement. The researchers, from the Netherlands, said that finding a positive sentinel node was the only predictor of overall survival in patients with thick melanomas. Since Robert’s very thick melanoma was not accompanied by lymph node involvement, we hope that bodes well for his longer-term prognosis. 
We are taking what we can get right now – but continue to look for more information. We will consult with another top melanoma researcher, Dr. Lynn Schuchter, at the University of Pennsylvania next week. Stay tuned … we’ll keep you updated here!

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.

One concern raised by Dr. Venna at Washington Hospital Center is that some patients in the Hopkins trial are getting the vaccine along with a another drug, cyclophosphamide, which is known to have serious side effects when used at higher doses as a therapy against some cancers. As Dr. Sharfman described its use in this trial, the dose is low enough that it should not cause harm or bad side effects in otherwise healthy patients.
The vaccine, known as melanoma GVAX, is made from cultured melanoma cells that have been modified to secrete a natural substance (granulocyte macrophage colony stimulating factor, or GM-CSF) that activates immune cells in the body. It is similar to vaccines that have been used in trials against other types of cancer over the last 15 years without serious side-effects.
Dr. Venna did not express concerns about the vaccine itself, although he did note that it hasn’t been proven effective yet. Rather, his concern was about exposing Robert to cyclophosphamide, which can cause unpleasant and dangerous side effects.
Dr. Sharfman’s explanation was that the dosage of cyclophosphamide given to fight lymphoma, multiple myeloma, and leukemia is 10 times the dose used in conjunction with cancer vaccines. He said no serious side effects have been seen when it is used at this low dose. He also explained the purpose for giving it with GVAX is to knock out lymphocytes that interfere with the immune response the vaccine is aiming to produce.
As I understood his explanation, some mechanisms of the immune system that keep it from going overboard are associated with certain lymphocytes, called regulatory cells. In doing what they are supposed to do, these cells are keeping the vaccine from working. Researchers believe that a low dose of cyclophosphamide will knock out those regulatory cells without knocking out other white cells, neutrophils, red cells and platelets in the blood. The overall effect, he said, is to give the immune system a bigger boost than the vaccine alone would produce.
From Dr. Sharfman’s perspective, the downside of doing the trial is that we could be wasting our time. That’s true on two scores:
·        we don’t know if Robert’s cancer will recur, and
·        we don’t know if the vaccine will work, with our without the cyclophosphamide.
Looking at the chance of recurrence, it’s higher if this was a metastatic melanoma than if it was primary – something we may never know for sure. So, we’re left with this: SIZE MATTERS, and this one was big. One estimate of the five-year survival rate for tumors larger than 4mm in resources available on the web is 37%-50%. Another website sets the five-year survival rate for Stage IIB (which includes nonulcerated tumors >4mm) at 70% and the 10-year rate at 57%. I don’t like either one …
We will most likely seek one more opinion, this time from a melanoma expert who has no vested interest in what we decide. The easiest place to go would be the University of Pennsylvania, perhaps on our way to or from New England in the next few weeks.
If you have thoughts about any of this, please give us a call. Otherwise, we’ll keep you posted here.

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.

The pathology and radiology reports indicate that Robert has no more cancer in his body. Specifically:

·        The tissue removed in the wide local excision (WLE) included sufficient clear margins, and that gives us comfort that the entire malignant melanoma was removed.

·        Biopsies of the sentinel lymph nodes removed on June 18 found no evidence that the cancer had spread through the lymphatic system before it was removed.

·        The PET/CT scan performed in May found no evidence of cancer elsewhere.

Essentially, this is the best condition we could have hoped for: “no evidence of disease” (NED). In most cases, when dealing with a completely removed primary melanoma, the doctors recommend no treatment other than following up to look for any sign of recurrence (“watchful waiting”). This would include quarterly examinations using a Wood’s lamp, an ultraviolet light that dermatologists use to look for discolorations that go along with various skin diseases, for the first year and possibly reduced in frequency later on. In addition, they will want to do more PET/CT scans, possibly twice a year reducing to annually.

According to the National Cancer Institute, watchful waiting is a course generally used when the condition is thought to progress slowly or when the risks of treatment are greater than the possible benefits. If this was a case of primary cutaneous melanoma at Stage 0 or Stage I (small lesions on the skin, completely removed, no evidence of spread inside the body) that would be an easy call.

Our concern comes from the size of the cyst that was removed in early May from under the skin on Robert’s scalp. It was measured at 9.5mm in the first pathology report from Boston University. Any melanoma thicker than 2mm is considered to have gone beyond Stage I. Generally, tumors greater than 4mm with no ulceration are staged at IIB if there is no evidence of metastasis (T4aN0M0 = T4 meaning the tumor is >4mm thick, a indicating no ulceration, N0 meaning no cancer in the nodes, M0 meaning no signs of cancer elsewhere in the body). Bigger lesions are considered to have a greater chance of recurring.

Chemotherapy with interferon alfa-2 often is recommended for Stage IIB melanoma. Although it’s a nasty drug and therefore sometimes ruled out as a therapy for older patients, Robert’s physical condition is excellent and the doctors believe his body could take it. There is some dispute, however, about how much good it does, even in patients with high-risk conditions. Studies have shown that a low dose of interferon alfa-2a is effective only in delaying relapse, but this treatment apparently doesn’t extend overall survival. High doses of interferon alfa-2b, on the other hand, not only delay relapse but also prolong survival.

I won’t go into the side effects here, but suffice it to say we would like to skip interferon unless there’s a good reason to take it. We have been looking for alternatives (and we’re grateful for the many researchers who are, too). We’ve found a few clinical trials for promising new chemotherapy drugs, including some that seem not to be as harsh as interferon alfa-2. However, these trials tend to be randomized – meaning we might not know which treatment is being administered and wouldn’t have a choice. This doesn’t seem like the best route to take.

In addition, there are trials for vaccines that are thought to boost the immune system to fight recurrence – including one trial being conducted at Hopkins. We will talk with Dr. Sharfman about this when we meet with him next week. Some patients in this trial are being administered another chemotherapy drug along with the vaccine. We might be able to sign up for the trial and then pull out if Robert ends up in the group that gets the additional drug.

Our main question is: does the size of Robert’s lesion warrant treatment with nasty chemo drugs, with or without the vaccine?

We took one step toward trying to answer that question last Wednesday during a phone conversation with Dr. Suraj Venna, the head of the Melanoma Center at Washington Hospital Center. He called us after reviewing Robert’s case at a meeting with other members of the melanoma team, prompted by a call from our cousin Ilona. (For those who don’t know her, Ilona is a pediatric dermatologist at UCSF and worked with Dr. Venna there before he came to D.C. She’s married to my cousin Mark Jacobson.) My take-away from the conversation with Dr. Venna was that he believes the risk of chemo drugs is not warranted in Robert’s case, considering that Robert is NED at this point.

Dr. Venna also told us one result of the meeting with his team is that Dr. Jang, the oncologist, has sent Robert’s case to Stanford University for review by Dr. Susan Swetter, one of the top researchers focusing on “primary dermal melanoma” (PDM). This is a type of melanoma that has been identified in a small number of patients most of whom were originally diagnosed with a cyst and had no sign of melanoma on the skin. One distinguishing factor for this group of patients appears to be that they have a better long-term survival rate than patients with metastatic melanoma.

There are only a few articles on PDM available for free on the internet, and I have read them. I don’t claim to understand everything they say, and there may be more recent articles reporting on newer findings that I don’t have access to. I don’t expect Dr. Sharfman or Dr. Venna to be able to tell us with any degree of certainty that this is what Robert had – they have both told us we may never know for sure. But we plan to wait until we hear what Dr. Swetter has to say before making any decisions about what to do – or not to do – next.

We’ll keep you posted!

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.
The area of the wide local excision is coming along nicely now. The graft is starting to turn pink in some spots, and I can see the capillaries that Dr. Convit told Robert to visualize. There is one spot along one edge where there still needs to be some growth for the graft and original skin to come together, but it’s less than a quarter inch in diameter. We are still coating the graft with bacitracin twice a day and keeping it covered, but we are down to once-weekly visits to WHC. I call that progress!
The graft donor site is another matter. Robert may have thought he was healing faster than he really was, and he overdid something – and popped out all the stitches last weekend. Last Monday’s visit to Dr. Convit included a session of in-office stitching. This time, we will give it the attention it needs and deserves!
Our visit with Allison and her family was a wonderful diversion. Now we are back to figuring out what’s next and trying to make good use of the time between now and our next appointment at Hopkins. We have reached out to two people close to us who can help us do that – our friend Eydie, whose husband’s first wife died of melanoma many years ago and who is a top-level scientist in her own right, and our cousin Ilona, a pediatric dermatologist who knows the head of the Melanoma Center at Washington Hospital Center. Loren is in touch with some of the top people at the Melanoma Research Alliance to see if they can steer us to other trials we should consider.
The dilemma is this: as we consult with some of the top melanoma specialists, including Dr. Sharfman at Hopkins and the researchers who are doing some of the other clinical trials, how do we make sure the choice we make is the best one for Robert? We know the researchers have a vested interest in getting people to participate in their trials, and they may not be able to put Robert’s best interests first in their minds. This will surely be a time of intense study and decision-making for us.
We encourage calls, particularly from happy voices, and are looking forward to a visit from our friend Peter this week. I’ll try to post here more often, when we have something to share.

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!

If you read the information on the web about melanoma, you’ll understand where we are right now. In particular, I commend to you the National Cancer Institute’s pages on melanoma treatment: http://www.cancer.gov/cancertopics/pdq/treatment/melanoma/patient/. First the NCI site leads readers through the general information and staging of melanoma. Then, as you’ll see in the left sidebar, there is a general page describing treatment options, followed by a link for “Treatment Options by Stage.” I looked and looked, but I couldn’t find any information about treatment options for patients with unstaged melanoma.
So, the doctors won’t say that this is “melanoma in situ,” which is considered stage 0 – a form of cancer that hasn’t spread and usually is not very big or deep. Neither will they say it’s stage 1, which applies to tumors that are at most 2 mm thick. Reading the NCI information, it appears to be stage 2B, which applies to tumors that are more than 4 mm thick and haven’t broken the skin.
That is in keeping with what Dr. Jang, the oncologist at the Washington Hospital Center, told us Wednesday. However, Dr. Boisvert, the surgeon who performed the sentinel node biopsy, and Dr. Convit, the plastic surgeon, had said the WHC doctors were treating it as they would a melanoma in situ. This explains Dr. Jang’s suggestion that we go into this period of “watchful waiting” to see if the cancer reappears near the same site or crops up somewhere else in/on Robert’s body.
The prognosis for melanoma in situ is so much better than the other stages that I would love to believe that is what we are dealing with. The 5- and 10-year survival rates are 99%-100% when the cancer is caught at that stage. At stage 1, the survival rates stay quite high. When you get down to stage 2 the rates drop to 53%-81% five years after treatment and 40%-67% after 10 years, and at stage 3 they are lower still.
It’s the “not knowing” that makes this difficult. I want to believe that this is melanoma in situ, but when they offer to get Robert into a study that’s for stage 3 patients I am confused and scared. If there is anything we can do to ward off another brush with melanoma I want to know about it, and I want the information necessary to weigh the risks of every option.
We have an appointment with Dr. Sharfman at Hopkins in three weeks. So once again, I guess, we’ll wait!

I suppose it was unrealistic of me to think I could install Drupal 7 and have it ready to do all that I wanted right away. I really wanted to allow my family and friends to sign up to receive emails whenever I update the melanoma portion of this blog. Whatever was I thinking?!
It’s also been difficult finding time to work on this website, and it is taking a lot more work than I realized it would. With all the hype about what’s been moved into the core of D7 – and indeed a lot of modules were included in the installation – I had built up an unreasonable expectation. Now that I’ve adjusted, and started to install modules to increase the functionality of the site, I’m starting to have fun with it!
My recent additions include the Messaging and Notifications modules, and now I’m ready to try my hand at making them work so that people can sign up for updates. I didn’t have to do this on my D6 sites because I have my own personal Drupal guy to make things work for me. However, one purpose of starting this blog was to learn D7, and when I saw the new module installation process I decided to take as much responsibility for the site as I can – including creating new features on my own. Installing new modules is very easy – you just copy the URL of the TAR file and clip it into the field that asks for it, and it happens automagically. No more FTP or using WinSCP to put the modules in the right folder. How much easier could it be?!
Another thing that I’ve found easier in D7 is granting permissions for newly installed modules. It’s possible that was similar (or the same) in D6, but since I didn’t take responsibility for the back-end of the site I considered it a chore. It’s nice to know that I can learn and increase my skill level, and D7 is giving me the confidence I needed to take on some of these chores on my own.
One problem I had seems to have gone away, and I’m not sure why. I was having a problem with the autofill functions and getting error messages (something to do with Ajax) whenever I tried to enter a taxonomy term on my blog posts. It wouldn’t autofill, but if I entered the term properly it still would show up at the bottom of the teaser on each post. That let me know that the problem was with autofill and might not have anything to do with the Taxonomy modules.
I also found that there was a conflict between the Toolbar and the Administration Menu. I wasn’t surprised by this, but I couldn’t fix it the way the documentation said – by using a setting to move the toolbar down. It still was hiding the drop-downs from the Admin menu – perhaps because I’m using Chrome, but honestly I don’t know why. Once I turned the Toolbar module off, the autofill was working again for my taxonomy terms. I thought I had fixed the toolbar so I turned that module back on, and voila, the ajax error messages came back. So, I’m back to the old-style admin menu – not unhappily, I might add. I miss the shortcut bar of D7, but I’m going to try to customize my dashboard and see how that works. Meanwhile, all is working fine at the moment, so I’ll move right along now…
Eventually I also plan to involve myself more int he Drupal community, in particular to figure out how to let someone know about the problems mentioned above. I have found it frustrating to try to post questions on drupal.org because I always seem to put them in the wrong place and then I don’t get any responses. So, I guess it’s time I grow up and join the party! No promises about the results, though – I’ve still got lots to do and too many things occupying my mind right now.
Who knew that full retirement was going to be so busy?!!

We arrived at Washington Hospital Center in time to be at the check-in desk at the Cancer Center at 1 p.m., the time of our appointment. Our past experience had led us to believe that they always tell you your appointment is about 1/2 hour before they expect you to see the doctor. Don’t we wish that was really their system!
There were moments, during the 1 3/4 + hours that we waited to see Dr. Boisvert, when we thought of leaving. The plastic surgeon had given us copies of the pathology reports, and we thought we knew everything he would be able to tell us. But I still had questions, so we read on our iPads until he finally came in.
After feeling Robert’s remaining lymph nodes (not sure why – maybe just to make us think he was doing an examination?), he told us that because there was no evidence of cancer left in Robert’s body, we should come back in three months to see him and Dr. Venna, and forget about it in the meantime. What? Huh? That’s it – that’s all there is to say? I noted that we hadn’t yet met Dr. Venna but really wanted more information about what they were thinking about Robert’s case, so he went off to find Dr. Jang, an attending physician who serves as the oncologist for the Melanoma Center, whom we had met on an earlier vist. And so, we waited again …
Eventually Dr. Jang came in. Essentially, he said that they consider this to be the primary site, and they normally just follow up with such patients every three or six months to see if the cancer came back. I asked what stage he thought the cancer was at, and after some mental figuring based on the depth from the path report on the skin (7mm) he said Stage II. He said the adjuvant therapies with interferon were expensive and had the potential to do more harm than good in someone Robert’s age … Our interpretation is that Dr. Jang wasn’t very interested in Robert’s case. Robert’s too old and the therapy is too toxic? Really? So, we left.
While I found Dr. Jang’s staging to be somewhat of a relief, I was dubious … and Robert and I talked about next steps. Before we could come to any conclusions, Dr. Jang called later in the day to say there was a trial of a new interferon substitute that’s much less toxic, and he faxed us a sheet about a randomized study in which two-thirds of the test subjects get the substitute and one-third get the interferon. The sheet said it was for patients with Stage III melanoma, but Dr. Jang said that because of the size of Robert’s melanoma (first reported at 9.5 mm) he thought he could get into the trial …
Well, I don’t think so! First of all, I want to go through the entire thought process on this. Robert’s is an unusual case in that we don’t know whether this was a “primary dermal melanoma” or metastatic. I guess that makes it a “melanoma of unknown origin.” We are heartened by the news that there is no evidence of spread of the disease and they consider Robert to be “free of disease” at this point. But after first telling us that Robert doesn’t “need” adjuvant therapy and may be too old for it, and then offering us this option to be in a blind study that may not get him the less risky drug … well, I don’t think so!
There may be other options. Dr. Sharfman, the clinical head of the Hopkins melanoma program, talked with us about a vaccine that shows promise in stopping or delaying any recurrence of the disease. So, we plan to go back to the north side of Baltimore, where we will meet with someone who 1) specializes in melanomas of unknown primary origin, and 2) will talk with us at length and tell us about all the uncertainties, all the possibilities, and all the options. If he believes it would help to get one more opinion, we’ll go wherever he suggests. And, at least to see Dr. Sharfman we are unlikely to wait almost 2 hours after our appointment time to see the doctor.
Actually, in retrospect I’m not sure WHC has a system at all for their Wednesday clinic days. I wonder if they don’t tell everyone to come at the same time and then just put you in a room and see people according to what time they arrive, or whatever random (or perhaps thoughtful) order they decide on. At any rate, we have three months to decide whether to go back for the re-check. And in the meantime, we’ll pursue other options.

Such good news at the doctor today – the sentinal node biopsies came back clear, meaning there was no cancer in the nodes.

Specifically:

Reactive lymph node. No evidence of metastasis on step levels and immunostains (S100, MelanA, HMB45).

Also, unexpectedly, the report from the skin that was sent to Boston University was back. I don’t understand all the details of it, but the plastic surgeon said it showed cancer in the skin that was removed from around the incision where the cyst was removed, clear at the margins of the graft. I’m taking his word for it!
The report goes on to list the two possible diagnoses:

The histologic differential diagnosis includes residual primary dermal melanoma (depth in this lesion of ~ 7 mm which is less than that reported in the previous lesion) or metastatic melanoma, as no junctional component is identified. The lesion is completely excised.

Robert is much relieved, in particular to have the pressure bandage removed from around his face. He has no sensation in the area of the graft, which is normal. Dr. Convit says he may regain some feeling in that area, but not for a while.
I am most relieved by two things – 1) the path reports, and 2) the possibility that we might sleep tonight!
Tomorrow we go to see the oncological surgeon – though I’m not sure why, now that we have the reports and the stitches have come out. On Friday we go back to Dr. Convit, and we hope he’ll take the staples out at that time.
The path reports have been faxed to Hopkins. We’ll keep you posted!
Please call – but not all at once!