Category: Blog

Amazing, what a real vacation can do for the spirit! Despite two weeks of travel out west and now a short trip to Asheville via GSP (where there are nonstops and affordable fares, even considering the rental car) I am relaxed, resting and writing at the Comfort Inn while waiting for Gabriel to nap before I pick him up from school. I feel as though I’ve taken a turn in the road, and I’m ready to get on with things.

This is no small feat, after the last 16 months of living with Robert’s melanoma. I have lived under a shadow, knowing that his lesion was big, deep, and aggressive. His is not a case of “skin cancer lite,” a term I’ve heard recently in reference to basal and squamous cell carcinomas and melanoma in situ. I don’t always smile when people ask, “But they got it all, right?”

 

Yes, I’ve sighed with relief when there was no evidence of disease (NED) at the six-month and one-year marks knowing that the highest likelihood of recurrence is in that time. But the thing about melanoma is, you never know what little bits might be floating around in there waiting for the right time to make their presence known.

 

I have spent a good deal of time in the last year learning about melanoma treatments. I’ve had many vehicles for this education. The most important has been our periodic visits with Dr. Lipson, Robert’s oncologist, who is very good at explaining things in terms we can understand. I’ve also followed news of recent research reports and other articles that come up in my internet feed. Some of that information has been useful in blog posts I’ve written -not as many as I had intended, perhaps, and many partially researched but never followed through. I believe I am reasonably well-informed.

 

My most constant source of information has been the Melanoma Research Foundation’s patient information page (MPIP), a discussion forum frequented by people who are actively fighting the disease. This includes “newbies” (those recently diagnosed and their loved ones and caregivers) as well as people with later-stage cases. Some of the best-informed participants in the forum have had recurrences and/or more than one family member as patients. Some have been fighting melanoma for more than 10 years.

 

My habit over the last year has been to read recent postings at least once or twice a day, and some days even more often. I’ve learned things I needed to know, and I’ve gotten help there in learning how to manage life with melanoma. Sometimes I’ve contributed, though most of the posts are asking about situations we have not encountered and I have nothing to offer in response.

 

Reading the MPIP posts can have a down-side. Most of the people who contribute a lot there are dealing with later-stage disease, seeking advice about how to handle treatments and their side-effects. All too often there is news we don’t want to hear – of someone in late-stage, or whose melanoma battle is over. It can be demoralizing and depressing.

 

I’ve thought for a while that I needed to visit the forum less frequently, but honestly it was a habit that was hard to break. I actually received benefit from it for most of the last 16 months, but I’ve come to know over the summer that it was time to quit. I just couldn’t …

 

This is what the vacation did for me (among other things): it broke the trance I was in, focusing on melanoma so intently since May 2012. My visits to the MPIP were the last vestige, and going on vacation broke me out of it. We were busy and without reasonable internet for most of the trip, and I didn’t even think about it until I got home. At my computer Thursday, I went back to my old habits – but I knew I didn’t want to do it any more so I stopped. That felt good!

 

I don’t think I’ve abandoned MPIP completely. I’m sure my days of researching melanoma are not over – I still feel the need to keep up on the latest research and treatments, even though I’m not living under that same cloud. If we face a recurrence, I’m sure I’ll go through a lot of emotional upheaval and won’t be able to think straight for a while – that’s what happened last time. I want to make sure I have a good foundation if the dread disease comes back to visit.

 

Perhaps I’ll give myself time every week for deciding what I want to follow on MPIP. It may end up being the newbies, just learning about what their life may be like. I think I have some insights that may help some of them. And, if I’m really ready to move on to some other focus, I would like to be able to help others do that as well – when their time comes. This will happen for many of them – whether temporary or long-term.

 

In another post, perhaps also written from Asheville (or maybe not until I get home), I’ll try to collect my thoughts on what’s next for me. And I’ll try to get the vacation review posted. I got at least a few amazing photos I can’t wait to share!

 

So … on to … something else! More about my pondering of priorities in a future post.

 

     

     

 

Dr. Lipson told us today that the final subject in the Phase 1 GVAX melanoma vaccine trial that Robert went through at Johns Hopkins was enrolled two weeks ago. Around the end of the year or early in 2014, the researchers will have all the data from the study and will begin to write a report that they hope will be published in the middle of next year. Although it’s too soon for them to begin speculating about the results of the study, they are noting an increase in the immune response when they look at the biopsies taken after the final injection. So … something’s happening there! Whether it’s enough to provide a viable therapy for lots of melanoma patients remains to be seen – but at least it’s a start.
We talked briefly about the research presented at the June meeting of the American Society of Clinical Oncology. Researchers and product developers are making progress – particularly with therapies for Stage IV patients, those with active, advanced melanoma that has spread beyond the primary site and its surrounding area. Clinical oncologists are using ipilumimab (known as ipi and marketed by Bristol-Myers Squibb as Yervoy®), an approved therapy that works against cytotoxic T-lymphocyte antigen-4 (CTLA-4), to prolong the lives of melanoma patients with advanced or unresectable disease.
A number of researchers are studying products that work against programmed death protein 1 (PD-1). One study reported this summer in which BMS used ipi together with its anti-PD-1 antibody, nivolumab, appears to have produced  even better results than those reported for ipi when it was approved two years ago. Another anti-PD-1 therapy, lambrolizumab (under development by Merck), also has done well in Phase 1 studies, according to reports published in July.
Less publicized, Dr. Lipson said, is research that’s still in the proof-of-concept stage, looking for tests that could offer some relief to patients at Stage II or III who don’t have advanced disease and aren’t eligible for treatment with ipi or studies of anti-PD-1 agents. In a nutshell, here’s the problem those people (including Robert) face: no one knows whether they are cancer-free after their previous treatments, or whether instead there are some micro-metastases floating around in their bodies somewhere looking for an opportune time and place to grow. You don’t want to use toxic therapies to treat patients who don’t have active disease unless you know there’s a real threat their disease will progress. But so far, no one has come up with a test that says who should be treated and who can go on with life as before because the melanoma is gone.
This research doesn’t appear to offer the golden egg – a cure for metastatic melanoma, which could save the lives of so many people and save their loved ones the misery of watching them die. What it offers instead is real peace of mind for melanoma survivors who are cancer-free but have no idea whether the ugly beast will invade their lives again.
The costs of carrying out these studies are high, and funding for proof-of-concept research doesn’t come easily. But why shouldn’t a project like this receive attention from donors as well? After all, it offers very real relief to tens of thousands of melanoma patients who are already cured but don’t know it. 

But that’s hard to do, coming up on scans and a visit with Robert’s oncologist in two weeks. I’ve written before about scanxiety, so I won’t repeat that here – nothing has changed, and from reading posts by others on the Melanoma Patients Information Page sponsored by the Melanoma Research Foundation, we are far from alone in this.
This month, though, we had another reason to be anxious. Robert’s dermatologist last week removed a “freckle” from the back of his leg that I’ve been eyeing for more than six months. He did a shave biopsy of it, and today the results came back: it was a benign keratosis. Whew!

The spot Dr. Giannelli removed was a small but very dark area I asked Dr. Wang, the Hopkins derm, about in January. He told me at that time it didn’t look very different from Robert’s other dark spots (freckles?), and therefore he wasn’t worried about it – but he said that if it changed or grew, it should be removed. I haven’t seen any changes in it, so I wasn’t worried about it – until the local dermatologist took it off and sent it to the lab.
I didn’t go to the dermatologist with Robert because I don’t much like him – he brushed me off when I asked him to show me what kinds of spots on Robert’s body I should worry about. I suppose, in retrospect, that it was an unreasonable request – it may have seemed to him like I wanted him to impart all his wisdom from medical school and years of practice in one office visit. But Dr. Wang did take time when I asked him a few months later, so apparently not everyone sees such requests the same way …
I suppose if I had known the spot was going to be removed I would have said goodbye. Anyway, I won’t have to watch it anymore and am glad it’s gone. Soon the other spots Dr. Giannelli froze will disappear, too. But really, nothing has changed …
Scans on August 20. Will try to write again before we leave on vacation. Otherwise, watch this space for photos from Yellowstone!!

There’s an interesting article from the New York Times yesterday about whether clinical trials work – not just melanoma trials, but trials of new treatments for all kinds of conditions. My reading of many posts on the Melanoma Resource Foundation’s Patient Information Page (MPIP) over the last year has led me to contemplate this subject. Here’s what I think about it.
The article was prompted  by findings released and discussed at the American Society of Clinical Oncology meeting last month. In a nutshell, it said that researchers consider failed trials a success if they further knowledge about cancer mechanisms and how certain treatments affect them – whether the patient responds to the treatment or not. Some people wonder how a trial can be a success when so many patients don’t respond.
For the community of patients, loved ones, and caregivers, at least those affected by melanoma, clinical trials of promising new therapies provide more “tricks in the bag,” more steps along the way to “beating the beast,” as one MPIP frequenter puts it. For too many, there is no such thing – it’s just a way to buy a few more months or years, hoping that a REAL cure will be found before our time is up. We’ll hope to be among the more than 38% of patients for whom anti-PD1 trials (experimental therapies that turn off the “programmed death” gene that makes some melanoma cells so deadly) create a durable response (in this case, more than 11 months so far). And if not, perhaps researchers will learn about some other mechanism while we are fighting or biding our time to see whether our disease advances, or until some other hopeful therapy enters trials that we could sign up for. More hope for us, more knowledge for the researchers … more life to live in the meantime.
Drug companies, according to the article, consider clinical trials a success if they lead to FDA approval of the drug so that people will have to pay to find out whether they work. Something is wrong with this system …
We want the trials to succeed because it offers hope, even if only 38% respond. Once the therapy is approved, it will cost us (or Medicare, or our insurer) handsomely. It doesn’t deter us from hoping for success.
I don’t have alternatives to suggest. I’ll leave that to the policy folks to figure out.

Read more about anti-PD1 research and melanoma here.

Well, “no” may be an exaggeration – but generally, yes, that’s what I love most about retirement. I could have a very busy schedule if I wanted to. There are so many wonderful things to do in Washington, D.C., and I have lots of friends, many of them also retired, with whom I promise to make plans “soon.” But truth be told, I love my leisurely life just as it is – at least for now.
My schedule is pretty simple because my weekday mornings are all promised. Unless other activities intervene, I take Chewey to the dog park and then go to the gym around 9 or 9:30 a.m. on Mondays, Tuesdays, Wednesdays, and Fridays. On Thursdays Chewey and I go to “dog school” for obedience and rally classes offered at Capital Dog Training Club, of which I am a lazy (non-competing) member. On gym days, I generally read emails and check out a couple of websites before going upstairs to shower and dress. After lunch, I spend some time at the computer. Then I read or pull a few weeds before Chewey and I go to the park for our late-day walk.
Sometimes other activities displace some of the regulars. Right now, for example, I head to the West End of D.C. for physical therapy twice a week, which is really cutting into my computer time – one reason for the dearth of posts to this blog during June. (The pain and numbness in my right hand are improving, and I only expect to need therapy for another month or two.) Other nuisance health care issues also take some time, though I’m glad to report nothing serious is going on with any of them.
My normal activities also get disrupted by travel, and happily I expect that to continue through the summer. In addition to our recent trip to New Orleans (see previous posts), we went to New York for Robert’s sister Sandy’s wedding and I spent a few days in Florida with my mother. Both of those trips included special time with Allison and Gabriel – what a treat! Now we are putting the finishing touches on a trip north for about 10 days and one to the West (Yellowstone, YES!) for two weeks at the end of the summer.
But the travel and PT don’t really explain my absence from blogging this month. I’ve written lots of posts in my head, and I’ve researched some melanoma topics that I really want to write about. I’ve thought through some Drupal 6-7 challenges to write about but not put anything into words. Most of my unrecorded blog posts have been of a personal nature, as I have continued working through my thoughts about what’s important to me at this phase of my life. That’s part of the leisure I’ve been enjoying.
I’m not holding this up as a model retirement for everyone. Some people need more of a schedule, and some folks need a greater sense of accomplishment in their lives – they need to have something to “show” for their time. Maybe I’ll get there again someday, but for now this is good for me. I have time to give attention to my family when they need it without shortchanging myself.
I know how fortunate I am. Not only do I have the love of family and friends as well as enough financial resources to live the way I want to without worrying about the future, but I can enjoy them without the pressure of too much to do and not enough time.
Lucky me!

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.