Month: April 2013

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.
Cancer Primer
You may already know that cancer is a condition caused when abnormal cells reproduce like crazy. In leukemia and lymphoma, this floods the blood or lymphatic system with abnormal cells. In other cancers, it causes tumors that not only grow in place but also have the capability to shed cells that travel to other parts of the body and grow a new tumor – the dreaded metastases. Although these tumors grow in a different part of the body from where they started, they still have the characteristics of the original tumor. In other words, a metastatic melanoma tumor growing in the lungs or brain (or wherever) has all the characteristics of melanoma – it’s just growing in another part of the body.
Also note the difference between “malignant” and “metastatic.” Malignant tumors have the capability to metastasize, but they don’t all do that. For example, some cancers are caught early enough to be eliminated before they actually send any tiny metastases out into the rest of the body. This includes the “melanomas in situ” that are Stage 0 or 1 (depending on size, depth, and whether they have ruptured or “ulcerated.”)
The question I keep asking is why the body’s immune system doesn’t attack these abnormal cells the way it does other foreign cells or bodies that don’t belong there. That’s also the question researchers are asking … and so far they don’t know the whole answer. What they do know is that cancer cells activate proteins that effectively turn the immune system off to the cancer cells. While a cancer patient’s immune system might continue to fight infection, it either ignores or doesn’t recognize the cancer cells.
This is a pretty sketchy primer. If you want more details, one place to start is the National Cancer Institute’s What is Cancer page. If that’s too technical for you, try the What is Cancer page on the American Cancer Society’s website.

Melanoma Therapies
Therapies used to fight melanoma are of three types:

chemical and/or biological agents designed to kill active cancer cells,

immunotherapies that stimulate the body’s built-in immune system to fight the cancer on its own, and

vaccines that target melanoma cells so that the body’s immune system will recognize and fight them.
According to the American Cancer Society, standard cancer treatments such as chemotherapy are not very effective against melanoma even though they are very toxic. Therefore, most melanoma therapies in use and under study today are immunotherapies or experimental vaccines.
The toxic side effects of chemotherapy drugs are the reason one physician we consulted cautioned us against agreeing to enroll in a clinical trial that has some study participants take cyclophosphamide. Researchers want to know if taking the chemo drug first to knock out lymphocytes that interfere with the immune response the vaccine is intended to create improves the vaccine’s efficacy. We weren’t faced with the decision about whether it’s worth the risk, however, because Robert was placed in a phase of the study that’s testing the GVAX melanoma vaccine without the nasty stuff.
The main melanoma treatments that have been approved so far are immunotherapies. Manufactured versions of the immune-boosting molecules interleukin-2 (IL-2) and interferon-α are used primarily against advanced disease, sometimes in combination with chemotherapy drugs. Whether used alone or in a biochemotherapy mixture, they can have severe side effects and often don’t prolong the patient’s life by more than a few months. About 10% to 20% of Stage III and IV patients treated with these therapies see their tumors shrink. Those odds aren’t very good, and given the bad side effects, these therapies aren’t generally used against Stage 1 or Stage 2 disease.
The newest immunotherapy approved to treat melanoma is ipilimumab, marketed by Bristol Myers Squibb as Yervoy® and known in the melanoma community as “ipi.” Ipi works by blocking the protein CTLA-4, which inhibits the immune system from attacking the melanoma cells. It has been shown to extend the lives of some patients with advanced disease, but it also causes severe gastrointestinal side effects in some patients.
All of these approved treatments are good at one thing: buying time for patients whose melanoma has advanced to Stage III (local or regional spread) or Stage 4 (metastatic melanoma, spread to other parts of the body). The real promise lies further in the future, with treatments designed to destroy the tumors themselves. I’ll write more about some of that research when I can figure out what it’s all about.
For now, I’ll turn my mind to the weekend, which has great promise: a lovely weather forecast, and a visit from my friend Sue. Then, next week, we go to Hopkins for the last visit of the clinical trial, including six-month scans. I’ll let you know the results as soon as I get them.

Sometimes when I take a break from blogging it’s because I’m busy. That happened in February, for example, when we went to Asheville for almost a week and then my sister and brother-in-law came for a visit. My two-week lapse earlier this month was for another reason—during that time I spent a lot of energy and brainpower (such as it was) dealing with depression. I’m pulling out of it now, and I hope that writing about it will get me all the way there.
Those who have read my last few posts might have gotten an inkling this was going on—one about post-treatment stress disorder, one about my search for support resources, and last week’s post about scanxiety. I hope this will be the last in a series …

The first symptoms I noticed were physical: in mid-March I was so anxious that I could feel my heart pounding when I got into bed at night. I did not believe what I was experiencing was a serious heart condition, but I wanted to rule that out, so I scheduled an appointment with my primary physician to have a physical exam. I also started taking my blood pressure almost every day to find out if what I was feeling came from high blood pressure.
The result is that physically I seem to be OK—the EKG was good, my blood pressure normal, bad cholesterol just a little high, good cholesterol way up there, liver and kidney functions fine. My physician told me she sees this a lot in cancer patients (and caregivers) who are reaching the end of treatment and told to just go on with their lives. It appears to be a form of stress cardiomyopathy, with symptoms similar to those women describe when having a heart attack—not necessarily the crushing chest pain that men experience, but palpitations, shortness of breath, difficulty sleeping, and fatigue (among others). According to WebMD.com, it starts when the sympathetic nervous system begins releasing a flood of chemicals, including adrenaline, that stun the heart and keep it from pumping properly.
Some people who experience stress cardiomyopathy need to be treated for anxiety, and some need to take beta blockers or ACE inhibitors to help their hearts return to normal function. I’m pleased to say that my condition hasn’t required any chemical treatment—this time. I think working through the problems in my head was the right way to approach that. Other steps I’ve taken include avoiding other stressful situations—work, for example!, and arguing. I also stopped pushing myself quite so hard at the gym, keeping my heart rate below “high” on the elliptical by slowing down whenever it got into the “peak” range.
I haven’t yet found (or started) a support group, but I have been in touch with a few people in similar situations. A few people from the Melanoma Research Foundation’s Melanoma Patients Information Page have contacted me, and that has been very helpful. And, I’ve made time for lunch with a very close friend whose husband has just finished treatment for the most aggressive form of prostate cancer.
Here are some other stress-reducers that seem to be working for me:

I’ve been reading—a lot! I’m a slow reader, so I say that only based on the amount of time I’ve spent doing it—between one and three hours each afternoon.

We’ve started doing some of the projects that need to be finished to make our house more livable. The stone mason has completed the drainage project intended to keep water from coming up in our basement when it rains. He also fixed the stone wall, rebuilt the alley wall, and put in a small patio—which I intend to make larger, now that I see how much I like it.

I’ve met with a gardener who will help me transform the gardens around our back yard, adding some shrubs and putting in a perennial garden for cutting flowers. This has gotten me back into my rock garden for some weeding, which is relaxing as long as I don’t obsess over it.

I’m ready to plan something several months in the future. We’ve looked into taking a vacation in the July-August-September timeframe. Now that I know what’s realistic (NOT Yellowstone this summer!), I’m ready to get serious about it. And, I’m determined not to be stressed about it. We’ll see how that goes …
I’m more relaxed than I was a few weeks ago, and I no longer feel my heart pounding the way it did in late March and early April. Progress – what more can I ask?

In the melanoma community, and perhaps among groups with other cancers, there’s a condition known as “scanxiety” – the anxiety that patients and their loved ones experience waiting for results of CT/PET scans and MRIs performed to look for and measure active lesions. For some of us (like me!) the anxiety begins even before the scan is performed. Hence, I am writing about this 10 days before Robert is scheduled to be scanned at Johns Hopkins, the final appointment of his participation in a clinical trial of the melanoma GVAX vaccine.
There’s been some discussion of a different form of scanxiety on the Melanoma Research Foundation’s Melanoma Patients Information Page in the last couple of days. The wife of a cancer survivor whose recent scans showed he has no evidence of disease (NED) four years after his cancer was discovered related that they were told he would be scanned again in a year but that would be the last time. She wrote: “I understand with my head and I have a year to become comfortable with this … I know 5 years is a big deal, but I also recognize the capriciousness of melanoma.” Her husband’s case, others I’ve read about, and Robert’s were discovered when we didn’t know to look for it and where there were no outward symptoms.  Now that we know so much more than we ever wanted to about melanoma, we look forward to the scans to reassure us that it’s not wreaking havoc in the patients’ bodies somewhere. The kind of scanxiety I described at the beginning of this post comes with the territory – but we know there will be an answer soon. We’re nervous, we’re anxious, but it gives us a break from the constant, nagging wondering about what’s going on in there. We get to reaffirm the patient’s NED status.
Perhaps I would be able to handle the second kind of scanxiety more easily if Robert had had a smaller, thinner lesion.  As things are, though (as I responded to the post on the MRF board), I can’t imagine being told “no more scans.” Watchful waiting, the “treatment” regimen that consists of no treatment, is hard enough even with scans. It’s just not very comforting to know that 80% of recurrences are found by the patients themselves or by their physicians. I’m not sure that data set is broken out by depth of the initial lesion – if it is, I haven’t come across an analysis reporting it that way. Were the 20% all patients with big, deep lesions to begin with?
This discussion points out the uncertainty many NED melanoma patients and their families live with. There’s controversy about the scans, to be sure. The patient is exposed to a lot of radiation with any of them, and the contrast dyes sometimes used also aren’t all that good for you. Further, melanoma specialists addressing a recent MRF webinar expressed reservations about PET/CT scans because they produce too many false-positives, sometimes causing patients to undergo unnecessary procedures and even more anxiety. But getting to reaffirm periodically that s/he’s NED is a big part of many melanoma patients’ and their loved-ones’ mental well-being.
I’ll figure it out eventually. Now, back to learning to live with knowing there’s nothing more we can do. The only thing I know, so far, is that it’s better than having something more to fight. I’ll let you know if I come up with anything more substantial to write about.

My friend John Schappi posted recently about his participation in a support group for Parkinson’s Disease patients, so I decided I would look again at support resources for melanoma patients. I started with what I knew – an online community that I’ve been relying on for information over the last 10 months. But as I’ve noted in recent posts, our experience with melanoma is in transition – from an active battle against the beast to one in which we get on with our lives. So, it’s time for something else – and my search continues.
The resource I’ve been using, Melanoma Research Foundation’s Melanoma Patients Information Page, is the most active melanoma community I’ve found so far. Patients and their loved ones are online a lot there, and some of them are quite experienced in researching and answering questions. The active community includes some multi-melanoma survivors/families and patients across the spectrum of melanoma types. (Patients with ocular melanoma have a separate board on the MRF site, so we don’t read much about melanoma of the eye on the main board.)
A lot of patients with “no evidence of disease” (NED) and their caregivers “check in” from time to time on the main MPIP board to share their good news about recent test results. However, as one very active member of the community (who goes by the screen name Janner) noted recently, the main board attracts people who are new to melanoma and are seeking information from experienced, active melanoma warriors – the other primary group on the board. By and large, as Janner said, long-term survivors who have been treated and moved on aren’t on the site much, and the bulk of the traffic (posts and comments) comes from newbies and patients who are in active battles against the disease. As she said, you can get a pretty skewed view of life after melanoma treatment if all you look at is posts from people in active war with the disease.
I’m ready to move on from MPIP (at least for now), but I think I need something to replace it. So, I’ve been looking for another resource. Here’s what I’ve found so far.
WebMD also sponsors a Melanoma/Skin Cancer Community, but it is not nearly as active as the one offered by MRF. WebMD’s staff monitor the board and try to offer helpful information, but they are not schooled in melanoma and appear not to be personally involved. That’s only important if you think people who are actually part of the community offer more helpful advice than a website’s employees who are there to help people use the website better. It’s the lack of ongoing discussions that keeps me from thinking this will help me move on.
Patients Like Me aims to create a lot of communities for patients with various diseases. The website has snazzy tools that chart your mood and symptoms if you take time to update, but not much other substance. This site serves patients with many different diseases, and the melanoma community there is pretty small (about 140 members) in comparison with MPIP. You can join forums and follow tags for other conditions, but it doesn’t appear to offer the same kind of active community I’m accustomed to.
My research also found a helpful listing of melanoma support groups on the website of the American Melanoma Foundation. It doesn’t list a live group in D.C. or close-in suburbs (unless you count Fairfax as close-in, which I don’t since it’s in Virginia and more than one county from the District line …), and it’s possible the website hasn’t been updated since 2006 – so not the most helpful. I looked at the online support groups listed on the AMF page, but neither of them looked promising.
I’ll keep looking, and will ask Dr. Lipson for suggestions about how to find a group when we see him at the end of the month. I also plan to post on the MRF community board to see if anyone else knows of a group or is interested in getting together.
Meanwhile, my stress level seems to be inching down. I’m sleeping better, and I don’t feel anxious when I go to bed anymore. Perhaps I can take care of this on my own (my preferred way). It’s certainly worth a try.

I’m coming to realize that I’m going through a form of PTSD that is not uncommon for cancer survivors and caregivers. It’s nothing new – a literature search finds articles and papers about it going back at least to the 1990s. But it’s new for me, something I hadn’t thought about before. Oh my, will melanoma ever stop giving me opportunities to learn about things I have no desire to know?
Well, I suppose the answer to that question is “no.” Having put that aside, let’s get on to the subject at hand – post-treatment stress disorder. It’s something that affects both cancer patients and their caregivers. And, it’s not surprising, if you stop to think about it: as another member of the Melanoma Research Foundation’s melanoma patient/caregiver community pointed out, it’s like waiting for the other shoe to fall.
The particular form of cancer PTSD I’m experiencing crops up in exactly the situation Robert and I find ourselves in – transitioning from active treatment of his melanoma to the nerve-wracking “watching and waiting” regimen. I can imagine that being an active cancer warrior could turn out to be a piece of cake in comparison. That’s not to say it’s been easy (particularly for Robert), having surgery and then waiting for the skin graft to heal; figuring out what treatments were available and deciding which one to take; having copious amounts of blood drawn, getting vaccinated, having biopsies for the GVAX clinical trial – but at least we were doing everything we could. Now it’s time to accept that after the MRI and CT scan at the end of this month, the only thing we can do is “watch and wait.” In a way, it’s like watching North Korea: you know the capacity for bad things to happen is great, so you have to be keep an eye on them and hope you catch them before they have a chance to wreak havoc …
The American Society of Clinical Oncology (ASCO) has some tips for coping with the fear of recurrence. I’m working through them now, and you can see from this post that I’ve come to terms with the first one: “Accept your fears.” I’m still working on finding ways to manage my anxiety, and I’m hoping that, as the ASCO said, this fear really does lessen over time. As you can see, I’m writing down my thoughts and sharing them with the world, as suggested in ASCO’s admonishment not to “worry alone.” I haven’t decided yet whether to join a support group or talk with a counselor of some sort – it sounds like a good idea, but I’m not a joiner and have not generally found solutions from “talking” with a stranger.
Dr. Lipson, our oncologist, has given us a schedule for follow-up care – appointments with him every four months and skin checks with a dermatologist every three months. We’ll see him at Hopkins when we go for Robert’s scans, so the first appointment for follow-up at Sibley will be in late August. It’s time for a skin check, so I’ll get Robert to schedule an appointment later this month. Between appointments, I’ll check him out (!) pretty regularly and continue to kiss his head a few times a day …
I think we both qualify for the ASCO’s “healthy lifestyle” tip. With spring finally peeking around the corner at us every few days, I’m pleased to say that Robert has gotten back on his bicycle. He’s also signed up at a gym with our Medicare insurer’s gift of a membership in the Silver Sneakers program, and the gym has a pool to swim in when it’s too hot or cold to ride outside. We both eat pretty healthy diets, don’t smoke, don’t drink to excess.
The ASCO’s final suggestion is to reduce stress. I’m pretty sure the anxiety I’ve been feeling (yes, physically) is a form of PTSD, and I’m doing what I can to take care of that (see above). I’m scheduled for a physical exam later this month, so if there’s anything else going on we’ll know soon. Meanwhile, I’ll keep eating well, sleeping eight hours most nights, working out three or four times a week, taking it one day at a time, and writing this blog.
That should do it. Eventually.