Month: June 2012

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!

It seems as though life is at a crawl here. However, I expect our tolerance for waiting will increase tomorrow, when Allison and her family arrive! It will be good to have the distractions, and something to engage us while we wait for what comes next.

Four days post-surgery, we have adjusted to the status quo. Robert is set to see the plastic surgeon on Tuesday to have the official unveiling. His head is wrapped with what Dr. Convit called a “mummy bandage.” Essentially, there is an ace bandage covering the gauze that covers his wounds. It keeps pressure on the graft site – and also creates tension around his face, which is the major discomfort he feels. On one side it covers the incision from the sentinal node extraction. On the other, we can see the gauze.
He also has an incision on his abdomen where Dr. Convit took the skin to graft to his head. This is less troublesome for him, he says – he doesn’t feel it. However, it is bandaged and needs to be kept dry.
We have figured out how he can shower – with a bag over his head! Of course we don’t tie it in around his neck, but he cut it off so that it is long enough to keep the mummy bandage dry – it sits up there loosely, like a hood. To cover the abdominal incision we use waterproof tape to afix a section of the bag that was cut off. It works OK – not perfectly, but whatever dampness got inside seems to have dried quickly.
He also has figured out how to sleep with his head and shoulders elevated, as instructed. The first night he sat in a chair, but he’s been able to sleep since then. I think the Percocet helps him get to sleep, and three pillows keep his head and shoulders up.
And now, we wait for the biopsy results. I have not yet inquired why one specimen was to be examined locally while the others went to Boston. It’s a question for Dr. Boisvert when we see him on Wednesday.
So, not much to report on the melanoma front. We’ll let you know when there’s something to say. And in the meantime, I’ve bought new pillows – and toys! What fun!