Riding the Melanoma Roller Coaster   August 10th, 2011

It’s only Wednesday, but each day since the week started has been filled with dramatic ups and downs of a roller coaster, at least in terms of options and prospects for the on-going treatment of my melanoma.

When I started the week, based on a meeting with my oncologist last week, I was under the assumption that the 3cm melanoma tumor that recent CT scans found in my right groin region would be surgically removed, and possibly some questionable lymph nodes in my left groin region as well, to be determined by the PET scan I had last week.

My 'get out of jail' card should I have been detained for being radioactive after my PET scan last week

My 'get out of jail' card should I have been detained for being radioactive after my PET scan last week

However, yesterday morning I met with my oncological surgeon, and he advised against surgery because the results were not likely to make an impact against the spread of my cancer, but carried a high risk of tissue morbidity. Translated into English, that means that surgery would only increase the amount of lymphedema that I have in my right leg, and would likely give me lymphedema in my left leg, without any real benefit in terms of dealing with my cancer.

He did, however, confirm that the enlarged lymph nodes in my left groin were 80-90% likely to be melanoma after reviewing my PET scan (which also did not reveal any new areas of concern beyond those identified in the CT scan).

By the surgeon’s estimation, the spread of melanoma to my left groin qualified as metastasis, (albeit relatively minor in the grand scheme of things), as it meant the melanoma had spread to another part of my body from the original site in my right groin, probably via the blood stream (and maybe the lymphatic system). While cancer staging at this point is perhaps a bit subjective, I appear to have progressed to Stage IV melanoma (albeit Stage IV-A), meaning I now officially have metastatic melanoma.

The surgeon, after consultation with my oncologist, indicated my best option at this point would probably be systemic treatment, likely to be Interleukin 2 (“IL2″) and/or ipilimumab (also known as “ipi” or “Yervoy”), but that would ultimately need to be discussed with the oncologist in greater detail.

While the idea of not being able to rid my body of obvious signs of cancer was a disappointment, I must admit I felt extreme relief at the idea of not having to go through surgery again, and dealing with the painful aftermath of a catheter and the pain and annoyance of drains and bed rest and recuperation.

So, imagine my surprise this morning when I met with my oncologist and he proposed a course of treatment that might well include exactly the same surgery the surgeon advised against.

There was a big difference in intent however, namely that the removed tumors in the proposed surgery would be used to cultivate t-cells (immune system cells) which had been shown to be effective at fighting my melanoma to some small extent. These immune cells would be bred to create a much greater number of t-cells, and also boosted to make them more effective in order to create a highly tailor immunotherapy treatment specific to my exact melanoma mutation. This is considered a gene-based therapy, tailored to the individual the original cells came from.

This treatment, while still deemed experimental, has had a much higher success rate in dealing with metastatic melanoma than any other sort of systemic treatment, including IL2 and ipi – on the order of 42-60% prevention of near-term recurrence. The systemic treatments have success rates in only the single or low double digits individually, and slightly better if applied in series.

But there’s a catch.

The special treatment therapy, which is known as either Adoptive Immunotherapy or Adoptive Cell Transfer, is only performed by a small number of facilities in the U.S., and is not covered by insurance because of its experimental status, which means that the facilities themselves foot the bill, which in turn makes them highly selective. The most advanced facility for this special protocol is at the National Cancer Institute (NCI) in Bethesda, Maryland, under the guidance of Dr. Steven Rosenberg, and the program is highly selective, looking for a number of biological factors in candidate patients.

My oncologist believes I meet the desired profile (including being relatively young, in good health (not affected by the metastatic melanoma, that is), having metastatic melanoma, and having resectable (removable) melanoma tumors that are at least 4cm in the aggregate (combined)).

So, right now the hospital is contacting the NCI to submit me as a candidate for this protocol. I am told I may hear back as early as next week as to whether or not I pass the initial hurdle as a potential subject. If I pass that first level of screening, I understand I would need to fly down to Maryland to get a new set of scans as well as some tests, and if the clinical team finds my situation meets their admittance requirements, I would be scheduled for surgery at NCI.

Once my existing cancerous nodes were removed, the researchers at NCI would attempt to grow a batch of modified t-cells which would then be put into storage for use if (or more likely when) my aggressive melanoma showed up again on a future scan. In the meantime, I would continue on some sort of systemic drug treatment for my melanoma in the hopes that it would prevent recurrence. That drug treatment could still include the Sylatron I am currently on, or be IL2 or ipi (or some others as well).

If the NCI does accept me, one of the other benefits is that it will cover all the costs of my testing, surgery, and t-cell manufacture, and insurance would therefore not be involved (although it would be involved for my on-going systemic treatment at Mass General Hospital after the surgery).

If the NCI doesn’t accept me as a subject for their protocol, my oncologist and I will discuss more advanced systemic treatment, which may well start with a course of IL2. The 3cm+ tumor I have would be used as a reference to determine the effectiveness of such treatment. Clinical trials for drug combinations to combat melanoma would be a further option.

As far as my existing systemic treatment goes, I have been told to take my last induction-level dose of Sylatron tomorrow as scheduled. Considering how weary that high dosage has been making me, I will be glad to have it over.

For now, all I can do now is wait and see what the NCI says and not make any fixed plans or set any expectations more than a day or two out, since anytime I try, things change. While I may hear back next week about my initial acceptance or rejection, there’s no guarantee it will happen that quickly.

Personally, I hope the NCI accepts me. Even though further surgery intimidates me, the potential of the Adoptive Cell Transfer protocol to provide me with a future cure (at least as much of a cure as is possible with metastatic melanoma) is very appealing, for obvious reasons.

For the medical geeks among you, here are some links on the Adoptive Cell Transfer Therapy and the system drugs listed above:

 

Thanks to inspiration from a discussion with my friend Ellen Horne at WNYC, I’ve decided to try to complement my written blog with a video blog. Should you find yourself bored by reading my missives, an abridged version of this written post can be found in the video blog, accessible below.

I just returned from several days in New York City, where we dined very well at mostly excellent restaurants, explored a couple of museums, attended a wonderful musical, and met up with friends we hadn’t seen in a while (and missed several others, unfortunately).

It’s not clear that the trip would have been as enjoyable had I not had my Sylatron immunotherapy treatment for my melanoma cancer suspended due to an alarmingly low white blood cell count (see the previous post). I also took the step last Friday to try acupuncture as a way to reduce both the fatigue and appetite loss the Sylatron had induced. I believe the combination of the acupuncture and the lack of a fresh dose of the drug last week allowed me to eat my way through my New York stay.

At the same time, I found that my energy reserves were still not the best, and that I required daily naps. The realization that I might need regular blood tests during the course of my many month or even multi-year treatment with Sylatron, along with the inherent side effect of fatigue, led me to another conclusion, supported by my doctor. Namely, that my plans for an expansive three month trip to Asia and Australia this autumn would not be really viable. So we’ve unfortunately had to cancel our planned tour to Vietnam and Cambodia in November, and stopped all of the related trip planning to the other side of the world. All to be revisited at some future date, hopefully.

This decision goes deeper than might be apparent, as it is a sign of things to come, namely the inability to plan grand and lengthy things because there is so much uncertainty, even in small things, beyond a certain distance in time.

Mark Beckelman, the recently deceased mentor and friend I mentioned in my prior post who gave me hope when things seemed bleakest after my diagnosis, shared with me that he was happiest when he was living in the moment and living his life. I have come to learn that “living in the moment”, as Mark described it, is pretty much a necessity when you have a life threatening disease, especially where the treatment is fluid, affected by physiological factors as well as chance. Planning for more than three months into the future probably falls outside of “living in the moment”, so, at least for now, I will try to limit my planning to the nearer term, and in smaller chunks that can be more realistically achieved even when other factors change.

On the bright side, as we have proven to ourselves with this week’s NYC trip, I can travel closer by (this hemisphere), and will therefore, hopefully, be taking short trips around North America, including a trip to the San Francisco area in late October which will include (fingers crossed) a dinner at Thomas Keller’s The French Laundry, and visits with many friends we’ve not seen in a long time. My radiation treatment should be over by then (more fingers crossed), and hopefully I will fall into a more manageable routine with less external variability.

With respect to my treatment, I went in for a blood test today, and my white blood cell count had returned to a low but manageable 2700 cells per cubic milliliter (up from 1900 early last week), and my oncologist said I should resume the full induction dose today, not a reduced dose as I was previously told. I will get tested again in about 11 days, as part of a meeting I have scheduled with him the afternoon of August 1st.

At that meeting we will also go over the results of my next set of scans, scheduled for next Wednesday, which will hopefully show that I have not had any visible spread of my cancer to the rest of my body.

These scans, which will take place every three months for the next couple of years after detection, and then get spaced out to being semi-annual or even less frequent over time, are an event of high anxiety for every cancer patient I have spoken to or whose words I have read. They serve as a double edged sword, as the hope is that the scans will be clean, reaffirming that the cancer treatment has worked (and is working), but at the same time they could be the harbinger of really bad news, namely that visible tumors have appeared.

This will be my second set of scans since my diagnosis, and I’m anxious and hopeful that I will hear that my scans are clean (again) when I get the results back from my oncologist on August 1st.

I also meet with my radiologist next week to start planning my radiation treatment for trying to kill any cancer cells that might remain in the vicinity of my excised lymph nodes in my right groin. Assuming nothing unexpected happens between now and early August (like bad scans), this will result in more scans to create a simulation of my treatment areas as well as a body mold to hold me firmly in place while a computer controlled radiation emitter accurately zaps only those parts of me that need the treatment.

More on that in my next post, as I learn about the process.

 

This morning I had an appointment with the oncological nurse practitioner who specializes in Interferon immunotherapy treatment for melanoma.

After she looked at my blood work, I was told my liver function was spot on, but that my white blood cell and platelet counts were extremely low, at 1,900 cells per cubic milliliter (cmm) of blood.

For reference, two weeks ago I was at 2,600 cells per cmm, while the normal healthy range is between 4,500-11,000. Likewise, my platelet count was down to 72,000 per cubic milliliter, down from 117,000 two weeks ago, with a healthy range being 150,000-400,000.

The nurse indicated my white blood cell counts were in fact now so low that I needed to be very careful about exposure to any infectious agents in the next few days, because it would be difficult for me to fight off infection in my weakened state. Also, to allow my body to stabilize, I also needed to suspend use of the Sylatron for a week or so to see if my counts recovered, and if they did (and she had all expectations that they would), shifting me to the lower maintenance dose of Sylatron of 3 μg/kg at that time to avoid a repeat of this situation. There is no indication that the reduction of the dosage earlier than anticipated will negatively impact the effect of the treatment, which is a relief.

So, no Sylatron for me tomorrow.

I will have new blood tests in just over a week when I return from New York City, where we will be dropping Krystyana off at the JFK airport for a trip she’s taking with National Geographic Student Expeditions to Italy and Greece for a couple of weeks.

You may be like I was, wondering how immunotherapy treatment would result in a more vulnerable immune system. Apparently the immunotherapy drug acts as a kick-start for the body to fight against the melanoma cancer cells, but also strikes a balance in the system, reducing white blood cell counts, among other things. The remaining white bloods cells should still sufficient to tackle the cancer cells (or so it appears to be), as long as there aren’t other problems, and suspending treatment for a week is generally sufficient for the body to get counts back closer to normal.

I was told that suspending use of the immunotherapy drug with a later downward adjustment in dosage was at not unusual, and that this is typical in a majority of patients during the interferon induction phase. Nor are my symptoms in any way unusual. Learning this was comforting. I also took additional comfort that with postponing my next dose I might actually have a bit more of my appetite come back, just in time for our jaunt to New York City and some of the fine dining we are planning on doing there.

More on Mutations

The meeting this morning was also educational in that I learned that while the genetic analysis of my melanoma indicated I had an NRAS gene mutation (see my prior blog post), that was not necessarily a negative thing. As I had written, the more common BRAF mutation is what is being targeted by some of the new melanoma drugs, but I was told that BRAF mutations actually carry a much higher risk of both relapse and aggressive spread of melanoma, relative to NRAS mutations. So while BRAF mutations have the targeted drugs and NRAS don’t, it’s probably because the BRAF mutations need it more. Further, these genetically-oriented treatments are more palliative (treating the symptoms and side effects) in nature than they are curative. So, I guess, a bit of a silver lining in my genetic mutation leading to my melanoma cancer.

Scans Coming Up, Radiation Too

The other result of the morning meeting was that I am now scheduled for full scans in about two weeks. These scans will be merely a snapshot and benchmark, and are expected to be clean, as all such scans could show are sizable tumors, and not any microscopic “seeds” of melanoma that might still be in me. I will also be starting my radiation consultations at the same time, which will ultimately lead to a simulation-generation scan, and then radiation treatment. I may also end up staying on the Sylatron during radiation now, but that is only a thought, not definite.

A Bit More On Talking About Cancer

Some discussion ensued about my “Cancer Sucks” t-shirts after my last post, leading to the idea that I and my fellow melanoma patients are really “Melanoma Warriors”. So, my next quest is to get some t-shirts made up with “Melanoma Warrior” on them. If any of you has a good source for low-volume, high quality t-shirts printed with block letters, let me know.

More from me later as my situation evolves.

 

I feel that I have been a bit remiss in providing updates here on my blog, but I figure I have a good excuse – namely fatigue from my Sylatron treatment, as well as being more easily distracted by a myriad of things, perhaps again because of the treatment.

I gave myself my fourth Sylatron injection last Wednesday, marking the half-way point of the induction phase of my treatment. And while my side effects are not nearly as challenging as they could be (two of my melanoma buddies who just started their Sylatron have already experienced fevers and chills within a half day of their first injections), it’s a bit of work to overcome the side effects I do have.

Two side effects are most prevalent. Fatigue is the first, mostly taking place in the mid to late afternoon every day. The occasional nap seems to help, as does exercise in the form of long walks in and around the city. On days when I have client commitments I seem to be able to bull through the fatigue for the most part, but can’t keep that up for more than a day or two without taking a break (including naps).

The other side effect that I find perhaps more disturbing is a lack of appetite. I can eat, and I’m certainly not starving myself, but a lot of the joy I took from creating my own meals and puttering about in the kitchen seems to have dulled. Folks who know me know that food is a major passion, so to have that passion fade somewhat is emotionally distressing. Again, I can overcome it (like with the excellent home-made clam chowder I made on the 4th of July), but it takes quite a bit of effort to motivate myself. I am also able to dine out at nice restaurants, but the portions I consume are necessarily smaller than they used to be, and it takes a bit of work to get through a multi-course meal. The good news, in a way, is that I am very slowly approaching the weight I had before I was diagnosed with cancer back in March.

I have also found that the injection sites are a bit tender for the first week after an injection, and that bruising is not uncommon – both of these symptoms require that I change my injection site each week.

So far, I have had two blood tests to see how my body is reacting to the Sylatron, and these have shown a noticeable drop in my white blood cell and platelet counts, but not so low as to have me suspend treatment. I get another blood test next week along with a meeting with my oncologist to discuss my status and my upcoming radiation treatment.

One good bit of news I learned about the cost of my Sylatron treatment is that when I resume with the maintenance dose of 3μg/kg (the current induction dose is double that – 6μg/kg), the cost of the Sylatron each month will be almost half of the present $12,576.99. We are still waiting for the insurance company to even register the claim for the first month’s dose we submitted nearly four weeks ago, incidentally. Not very encouraging, although we did get a letter indicating they had precertified the drug.

Genetics

One of the things I had requested back in May was a genetic analysis of my cancer cells, in the hopes that should I have a relapse down the road, drugs which target specific genetic mutations will be available to treat my cancer. It takes about a month for the genetic testing, and I learned a couple of weeks ago that my particular genetic mutation occurs in the NRAS gene (more specifically, at Q61-182Am, with the Gln61Arg mutation).

According to one paper I have read, about 20% of all melanoma mutations are NRAS, but most of the gene-specific treatments being worked on right now are focused on mutations of the BRAF gene, which is more prevalent in melanoma. I hope, for entirely selfish reasons, that more work will be performed on NRAS mutations in the coming years, so that when I might need additional treatment, the appropriate drugs will be ready for me.

In Memoriam

The saddest and scariest thing to occur this past week was learning that Mark Beckelman had passed away as a result of his fight with melanoma. Mark was one of the leading Photoshop experts in the U.S., but more importantly, he had been an inspiration to me. I “met” Mark this past semester – he was my Photoshop for Photographers instructor at the Academy of Art University. When I expressed my concern to him this spring about not being able to complete my coursework in a timely manner due to my melanoma diagnosis, Mark volunteered that he knew my pain, intimately, as he too had gone through a similar diagnosis and subsequent surgeries back in 2006.

At a time when I knew no one else who had had melanoma and all statistics suggested it was a likely near-term death sentence, the exchanges I had with Mark gave me hope that I had at least a few more years ahead of me, at the very least. He also relayed that he had had a relapse last year and was still fighting the spread of his melanoma, and that things were not looking too good.

On July 5th, Mark succumbed to his melanoma.

Even while he was suffering from his advanced melanoma, he had time to help me come to grips with my own diagnosis. For that I will be forever grateful, and hope that I can be as strong and giving of myself as he was with me. And that doesn’t even cover what I learned from him technically.

Mark – Rest in peace, and thank you.

Lymphedema

The other situation I am dealing with is the aftermath of my lymphadenectomy (also known as a completion lymph node dissection). One of the common physical artifacts from that surgery is lymphedema, which is a swelling of the region near the place where the lymph nodes were removed due to the accumulation of lymph fluid (the fluid that drives the lymphatic system). The reason for this is that the removal of the lymph nodes ends up acting as a block or dam preventing the lymphatic fluid from taking the usual paths (which would previously have been through the lymph nodes, acting as filters).

To minimize the lymphedema I am experiencing I have to wear a compression stocking 24 hours a day on my right leg, plus exercise (walking works well for this) to keep to the lymph fluid from collecting in my leg. Additionally, I have weekly physical therapy sessions with a lymphedema therapist, who performs an hour-long lymphedema massage on me to move the pooled lymph fluid up around and past the blockage into my torso where the body can deal with it more appropriately. The therapist, Kathy, has also shown Linda how to perform the lymphedema massage, and my lovely wife has been patiently performing the massage each evening before I go to sleep, as the end of the day is when the lymph fluid pooling is at its worst (you can feel hard patches just under the skin where the fluid has accumulated).

I will mention that my lymphedema swelling has been gradually improving (getting less), to the point where the swelling in my leg is barely noticeable, but unfortunately it has not gone away entirely, and I will likely face wearing a compression stocking for the rest of my life.

One of the goals, though, is to reduce the regular swelling as much as possible before I start my radiation treatment next month, as the radiation treatment will exacerbate the existing scar tissue in my right groin, and thus lead to more blockage and therefore more lymphedema. So, the more my lymphedema can be dealt with before then, the less severe the results will be of the radiation treatment – or at least that’s the theory.

Labels

As my blog post today is a bit of potpourri, I wanted to share my thoughts on a subject that has been bugging for some time – namely labels for those with cancer, and in particular, at which point someone can be deemed to be a “cancer survivor”.

Based on my readings and conversations, I have come across four cancer classifications/terms which are applied to those with cancer:

• Cancer patient
• Cancer sufferer
• Cancer survivor
• Cancer victim

From the rather intimate perspective of someone who has been diagnosed with cancer, I find myself unsatisfied with these terms.

The term “cancer patient” is the only that perhaps best applies to me in my present situation, since I am still undergoing treatment (and will be for at least a year or more). This term is the only one that seems to have some practical relevance to what is actually going on in the life of a person undergoing cancer treatment.

“Cancer sufferer” by its very nature, suggests there is suffering involved. While the mental anguish of being diagnosed with cancer could perhaps be seen as a form of suffering, society’s use of the term suggests that the suffering should be that of physical discomfort. However, for many cancer patients, the physical suffering relates to the treatment of their cancer (such as surgery and chemotherapy), and not the cancer itself. As such, perhaps this term would be better cast as “cancer treatment sufferer”. I don’t mean to diminish the pain and anguish of people with cancer who are suffering from the actual cancer itself, but I believe that casual users of the term don’t necessarily understand the distinction between suffering from treatment and suffering from cancer.

One of my melanoma buddies recently referred to me in his missives as a “cancer survivor”, and while I appreciate the thought, I must say I do not think of myself as a cancer survivor, at least not yet. At present there is no way to know if any cancer cells remained in my body after surgery two months ago, but the probability is high that not everything was completely removed. Think of it this way – you pour fine grain salt from a height onto a smooth kitchen counter. The salt represents cancer cells. The surgery is like a large sweep of a hand and arm across that counter. What is the likelihood that a single grain of salt remains on the counter, perhaps in some corner or area where the sweeping hand didn’t come across it? If you’ve ever spent any time cleaning kitchen counters, you’ll know the probability is high that there will be at least one grain hiding out somewhere.

This is why people in my situation go through systemic cancer treatment (like I am doing with the Sylatron), and also through localized treatment (like I will be doing with my radiation treatment next month). And why I will be getting regular scans every three months for the first couple of years.

As a cancer patient, I can’t see myself labeled as a “cancer survivor” until I have hit some sort of threshold or milestone with no cancer relapse. Statistically, for at least melanoma, the most cited milestone appears to be the five-year mark, and thus, if I make it to March 2016 without a relapse of my melanoma, I will gladly start calling myself a cancer survivor at that time. Until then, I am a cancer patient (and hopefully nothing worse).

What could be worse? Being a “cancer victim”. That has a rather terminal feel to it, as it suggests that one has already succumbed to cancer. However, I have heard living cancer patients referred to as cancer victims, and I can’t imagine how painful it must be for a cancer patient or the patient’s family to have that very negative term used in relation to the living patient.

Protesting Cancer

As I have been learning over the last four months (and it seems somehow so much longer than that), cancer does not discriminate. We just don’t hear much about how prevalent cancer really is. A recent fund raising e-mail from the LIVESTRONG Foundation suggests that, based on a global survey, only 34 percent of people said they would tell their friends if they had cancer. That is truly scary.

I’m firmly of the belief that the best way to address cancer individually and as a society is to be open about it and help people realize that cancer affects us all – either via friends and family who have cancer, or when one is diagnosed with a cancer.

In that vein, I now regularly wear a t-shirt that says “Cancer Sucks” (I have five different ones), along with a black silicone wristband with the same phrase. Linda and Krystyana wear pins, necklaces, and bracelets that feature black cancer ribbons with the word “hope” to share their support. I should add that black is the color for melanoma, and that someone somewhere came up with a color coding for each major type of cancer (hence the pink ribbon for breast cancer – see http://www.choosehope.com/category/by-cancer-color-cancer-type for more examples).

The idea with the “Cancer Sucks” t-shirts, the jewelry, and the wristbands is to both increase awareness that cancer can affect us all as well as a start a conversation with others who want to express their frustration and angst regarding cancer, and show support for friends and family who have been diagnosed with cancer.

I have had dozens of strangers come up to me in the last couple of weeks to tell me that they agree with my shirt, and some even ask where I got my shirt from so they could get their own. In case you’re interested, that happens to be the web site Choose Hope (http://www.choosehope.com), which donates a part of its proceeds to cancer research.

On that note, let me leave you with a photo of my t-shirt, worn yesterday on Boston’s Beacon Hill:

One of my many new "Cancer Sucks" t-shirts

One of my many new "Cancer Sucks" t-shirts

 

(I apologize in advance if some of this information seems repetitive to some of you, but I’ve been finding that people are finding my blog via search engines when searching for information about their own melanoma treatment options, and may not have the benefit of having read my previous posts.)

It has taken thirteen weeks and two days since I learned I had melanoma, but yesterday I finally started the systemic treatment which will hopefully prevent, or at least substantially delay, the further onset and spread of the nodular melanoma I have been afflicted with.

Close-up of Sylatron box front view

Close-up of Sylatron box front view

As I have previously chronicled, the systemic treatment designated for Stage III melanoma cancer – cancer which has not yet spread beyond the lymphatic system to various organs in the body – is typically the use of Interferon-alpha-2b. Other types of Interferon are used to help treat multiple sclerosis, hepatitis C, among other illnesses and diseases.

In contrast to systemic treatment for many other types of cancer, which involves cytotoxins (cellular poisons), and goes by the more innocuous yet ominous name of “chemotherapy”, Interferon is actually a biological substance that our bodies produce as part of our immune system response. Thus, treatment with Interferon is in fact “immunotherapy” – a way to attempt to help boost the body’s immune system to fight off things that should not be present, such as melanoma cancer cells.

I count myself as fortunate, at least as fortunate as I can be given my condition, because my onset of melanoma took place at a time when two new drugs to fight melanoma were being approved for use by the U.S. Food and Drug Administration (FDA). One of those drugs, Yervoy, applies only to the even more deadly Stage IV melanoma, while the other, Sylatron, is ideal for people with Stage III cancer, like my Stage IIIC. Both were released the same week that I was diagnosed with melanoma.

Sylatron is also Interferon-alpha-2b, but in pegylated form. Traditional Interferon treatment for melanoma – which has been in use for well over a decade – is a long, drawn out affair involving daily, 90 minute treatments via intravenous infusion for the first month, and then self-administered thrice-weekly injections for another eleven months. It has to be administered in this fashion because the human body rapidly absorbs Interferon as a natural process, so when introduced into the body from an external source, it only has a short lifespan to try and boost the immune system.

This spike in Interferon in the body after an infusion or injection also potentially ends up generating more severe side effects, which include flu-like symptoms, fatigue, and even itchy skin, among others. I was told by the nurse I saw yesterday morning that it was not uncommon for these side-effects to appear in a matter of hours after one of the regular thrice-weekly injections. For those that suffer the side effects there’s a constant rise and fall of intensity as well, based on my research.

Enter pegylated Interferon-alpha-2b – or Sylatron as it’s being marketed. The pegylation effectively encapsulates the Interferon and allows it to be released in a steady fashion into the body – much like a time release form of an over the counter pain medication. The benefit of this is three-fold.

First, it means a melanoma cancer patient like myself only has to get one injection (a self-injection as well) a week, of only a fraction of a milliliter of the drug. No need for daily 90-minute IV sessions during the induction phase – just a higher dose.

Second, because the body doesn’t go through the extremes of Interferon over-abundance and absence, the side effects may be greatly diminished in intensity (although all the same types of side effects are still possible), and at the same time it can make prolonged treatment beyond a year more bearable.

Third, a five year clinical trial in Europe of pegylated Interferon (the same trial which led to approval by the FDA less than three months ago) suggests that it may produce better long term results than the traditional non-pegylated version. In fact, as it was explained to me by my oncologist, one of the benefits cited by the study was that it provided a decent quality of life during the treatment period, with the intention being that someone being treated with Sylatron could live a reasonably normal life during treatment, including being able to work (and continue to earn a living).

More details from the box of Sylatron

More details from the box of Sylatron

The only real downside to Sylatron is its price. Four weeks (four doses) of the 888 microgram dose I currently need costs $12,576.99. That works out to about $3,144.25 per dose. And I have to be using an elevated induction dosage of Sylatron for eight weeks. After that my dosage will drop by about half for each weekly injection, although I doubt the price drops by half as well. As I pointed out in my previous article, this is an excellent reason to have insurance with prescription coverage.

And here’s a crazy thing: the actual dose I am supposed to inject myself with each of the first eight weeks is actually 648 microgram (give or take a microgram or two). That number is based on multiplying my weight by about 6 micrograms per kilogram of weight (and please, no comments about my weight – it’s a sensitive issue right now). The remaining 240 micrograms of Sylatron in the glass vial each week goes to waste as the drug only has a 24 hour shelf life once prepared for injection, meaning it can’t be save for the following week. That’s roughly 25% of the expensive drug wasted. Madness! However, the next smaller dosage for sale is 444 micrograms (of which I will be using about 320 micrograms), which will be enough once I go into the maintenance phase after my radiation treatment in August and September, but isn’t enough now.

However, I am extremely grateful, and yes, fortunate, that my melanoma surfaced when it did instead of even a month or two earlier because I have access to the Sylatron.

In fact, I am the first melanoma patient at Massachusetts General Hospital to be put on Sylatron – that’s how new this drug is in terms of systemic Stage III melanoma treatment. And while some might call me a guinea pig, I prefer to think of myself as a pioneer, and perhaps even a role model.

Obtaining Sylatron

So, I have now spent many hundreds of words on what Sylatron is about (which, as I pointed out, would be repetitive for some of you). Let me proceed with the reality of getting and using Sylatron.

After resolving many communications issues between the hospital and our particular insurance carrier (which specializes in coverage for U.S. citizens who are not U.S. residents and generally does that very well), word came in early this week that my use of Sylatron was pre-certified. We’ll see how that translates to the turn-around time on reimbursements for the monthly dose.

There are apparently specialized pharmacies around the country which deal with rare and expensive drugs like Sylatron. As one might imagine, one cannot just walk into any pharmacy and submit a prescription for a rare and expense drug like Sylatron. Here in Boston where I am getting my treatment, one of those special pharmacies is CVS CarePlus on Kneeland Street. My oncologist had made arrangements with them a couple of weeks ago for my Sylatron supply, and I then had to coordinate with them on a plan to provide and deliver the drug to me. Originally they had planned to FedEx the Sylatron to me, but without any insurance – that also seemed crazy. Once they realized that I was only about two miles away, they opted for a courier instead.

This past Monday, the courier arrived at our apartment, asked me to confirm verbally who I was, and handed me a brown paper bag and then left. I was never asked for ID or to sign anything. That lackadaisical delivery had me a bit freaked out, but I was also happy to finally have my treatment drug in hand.

My four pack of Sylatron for the next four weeks

My four pack of Sylatron for the next four weeks

The First Injection

The reason the drug came to me instead of the hospital goes back to the aforementioned self-injection. Sylatron is meant to be injected by the patient (or a not-too-squeamish loved one), so it makes sense for the patient to have the supply of the drug on hand in the home.

My mission yesterday morning (Wednesday) was to bring one of the four boxes of Sylatron I had in my possession to one of the oncology nurses at Mass General so she could show me how to prepare the drug for injection, and also how to inject myself.

Unboxing a box of Sylatron

Unboxing a box of Sylatron

Ellen, my oncological treatment nurse, spent a bit of time explaining how dosages worked for Sylatron, and also confirmed that I was the first cancer patient to be put on the drug as a course of treatment at Mass General. The local sales representative from Schering, the makers of Sylatron, had visited Ellen the day before and given her more background and general information about the drug as well.

As I was the first Sylatron patient ever, I was also asked to keep notes on my reaction to the drug, as there were two or three other patients coming up that would also soon be starting their Sylatron-based treatments, and the more practical information Ellen had about the Sylatron treatment, the better.

The box contains alcohol swabs, syringes, documentation, a vial of Sylatron in dry form, and a vial of sterile water

The box contains alcohol swabs, syringes, documentation, a vial of Sylatron in dry form, and a vial of sterile water

After reminding me to wash my hands, Ellen had me unpack the box, which consisted of two vials – one of powdered Sylatron and the other of sterile water, two alcohol pads, two 1 milliliter syringes, and some documentation with drug information and details on all the sordid possible side effects.

Nurse Ellen explains how to use the syringe to mix the water with the powdered Sylatron

Nurse Ellen explains how to use the syringe to mix the water with the powdered Sylatron

To prepare the drug, I needed to extract .7 milliliters of sterile water from the water vial, and then inject it into the Sylatron vial. The Sylatron itself, which was in the form of a large aspirin tablet (as best as I can visually equate it) dissolved almost immediately upon contact with the water, getting a bit frothy in the process.

I then needed to extract .6 milliliters of the Sylatron in liquid form, and then inject it into myself.

Preparing for the mixing of the water and Sylatron

Preparing for the mixing of the water and Sylatron

The injection needed to be subcutaneous (below the skin), and the needles on the syringes were about half an inch long and very skinny. Ellen said that the injection could go anywhere that I could “pinch an inch” other than in my afflicted right thigh, and that it was best to simple jab the needle in quickly.

As I was wearing shorts, I opted for my left thigh as the target site. I swabbed down with the sterilizing alcohol pad, pinched my skin, and then slowly inserted the needle into the lump of skin. I opted against the quick jab because I was afraid I would miss, and I could not bear to see any of the precious .6 milliliters of Sylatron go to waste (after all, it costs over $500 per tenth of a milliliter!). It was a bit difficult to force the needle in (from a mental perspective) but once I penetrated the skin with the tip of the needle it ended up being no problem at all.

My first ever self-injection, holding the base while I depress the plunger, to make sure nothing escapes

My first ever self-injection, holding the base while I depress the plunger, to make sure nothing escapes

I held the base of the syringe against my skin as I left the skin go flat again and slowly depressed the plunger. That was it – surprisingly painless and simple. Next Wednesday, I do it all over again.

The aftermath of the injection - syringes have been disposed of and the vials are mostly empty

The aftermath of the injection - syringes have been disposed of and the vials are mostly empty

Side Effects

It’s now been about 32 hours since that injection, and on the whole I’m feeling reasonably well. I have a bit of fuzziness, fatigue, and achiness that I might associate with a flu or cold, but cannot say with certainty that it is entirely due to the Sylatron.

We happen to live near the Boston TD Garden, and there was a lot of loud excitement down below us on the streets as a result of the long overdue Bruins Stanley Cup win. We even had helicopters buzzing our apartment building. The celebratory cheering lasted most of the night and erupted again this morning when the Bruins returned to the Garden to get their cars after a red eye flight back from Vancouver.

So, I am thinking that the lack of sound sleep as a result of the celebrations may be the cause for some of my current aches and tiredness.

I am guessing I will get a better handle on the side effects over the coming few days, just in time for a several day business trip I need to take next week.

Next Up

This article has gotten too long for me to be able add information about lymphedema in my afflicted leg, so I will leave that until next week’s contribution as it is pretty interesting (at least from my perspective).

In any event I am thrilled to have finally started my systemic treatment, and hope that it achieves the desired result of helping my body attack and destroy all the melanoma cancer cells that might still be in my body. It’s a good feeling to be doing something towards that end.

 

As I continue to mend from the two surgeries I have had in the last two months (April 1st and May 9th), and plan for my indeterminate future, I find myself contemplating the cost of having cancer.

We typically think of “cost” as a financial issue – and certainly finances are no small matter in dealing with cancer, as I will describe below. But the cost of cancer takes its toll in a number of ways.

Among the more obvious costs are stress, depression, and confusion – and not just for the person who has been diagnosed with cancer, but also his or her family and friends. As I’ve discussed in prior posts, cancer has a very negative societal stigma – for good reason in some cases. But not all cancers are the same (in fact, few are the same) – some are deadlier than others, though if popular media were to be believed, all people with cancer must necessarily be miserable, desperate, resigned, physically weak people on the verge of expiration. That perception only adds to the actual cost of cancer, as it increases the stress, depression, and confusion.

That’s not to say that cancer should be portrayed as ordinary and innocuous, but there needs to be a more balanced approach to both educating the world about cancer in general and particular cancers in detail. My own research into melanoma as a layman has both been enlightening and terrifying. Enlightening because it is not nearly as glum a diagnosis as it’s made out to be, and terrifying because of how rapidly it can spread and how far behind other cancers, such as breast cancer, it is in terms of viable treatment options that can eradicate the melanoma cells.

The stress of simply “not knowing” is enormous, and is only compounded by the stress of how life altering the diagnosis is and how rapidly things happen after the diagnosis. Here I am, just over 10 weeks after diagnosis, with two surgeries under my belt, and a treatment plan that, assuming nothing else bad is found, will have me injecting myself and getting irradiated quite soon (more on that below as well), with my treatment lasting as long as I can handle it. On top of that, I will need to be back here in Boston for quarterly scans to detect a potential relapse (or, more optimistically, to confirm I am clear of new cancer) for years to come. Talk about a major life upheaval both for myself and my family.

Speaking of “under my belt”, one of the other costs of my cancer became evident yesterday as I realized just about none of my pants fit me anymore. Being laid up for two months with limited mobility has taken a major toll on my waistline, and the swelling in my right thigh added to that body change means I’ve gone from a 34-35” waist up to a 38-40” waist. It was distressing to have to try on a pair of cargo shorts with a 40” waist yesterday because I couldn’t get the 38” ones over my hips due to the swelling and weight gain. I have gained about 15 pounds in the last couple of months. I can only hope that as I become more mobile I can work myself back down so I can fit into my pre-cancer diagnosis clothes.

Mobility is definitely in sight, though.

I had a brilliant day yesterday as my surgeon removed the metal staples from the lymphadenectomy surgery that took place three weeks ago. He also informed me that the drain that has been the bane of my existence (and the sole source of pain when moving now) will be removed early next week. Another week with the drain will be tough, but knowing the end of the drain is coming is very encouraging and uplifting.

As a result of the date being set for the drain removal, I was then informed that my immunotherapy treatment with Sylatron (see my previous post) can start on June 15th. Simply knowing I actually have a start date for my treatment is a huge relief as well, and helps dissipate some of the stress associated with “not knowing”. I will be on a higher initial dosage of Sylatron for 8 weeks, then weaned off for a week or two before starting four to six weeks of radiation therapy, after which I will resume my Sylatron injections.

In light of all this news, I felt so good yesterday that I went on a bit of a walkabout with Linda and the kids. First to wander around nearby Charles Street, and then to go shopping for whole leaf tea and supplies to make fresh brewed ice tea, since warm weather is perfect for consuming ice tea.

I had held off on the tea buying field trip because I had heard stories about anti-oxidants potentially causing problems with cancer treatments, but my oncologist confirmed that I had no dietary restrictions (including tea and wine) during my immunotherapy – the issue with anti-oxidants applies more to particular chemotherapies (when one is being treated using toxins to kill cancer cells – not the case in immunotherapy, which is boosting of the immune system).

And while out for tea, I also tried on shorts, which lead to my weight gain revelation.

But as some stress gets alleviated, new stress crops up too. Right now that new stress is dealing with health insurance.

While we have a very good medical insurance program, it is a bit atypical with respect to prescription medicines. Most American health plans offer a prescription card, maybe with a co-pay, which can be used to cover most of the cost of prescriptions at a pharmacy. However, our plan is designed for American citizens who live outside the U.S., so instead we have to pay for our prescriptions out of pocket and then submit a claim to be reimbursed. Normally that’s not a big deal.

However Sylatron costs about – sit down for this – $13,000 a month (not a typo). And I could be on Sylatron for years. So, the last week has been spent trying to confirm that the insurance company will in fact pay for the Sylatron prescription, and to see if there would be some way to bypass the issue of having to pay for it first and then get reimbursed.

Adding to the stress is the insurance company won’t confirm it will pay for anything until it actually processes a claim, and there’s apparently no alternative to the pay-then-claim approach, so right now the hope is that they will quickly approve and pay the claims we submit for Sylatron each month without setting up any roadblocks or delays, so that we can limit ourselves to only being out of pocket for one or two months of drug costs at any one time (which we can manage fine, fortunately – it might get sticky if it stretches out to many months though). I should add that under our current policy there should be no reason they could deny coverage, but they could certainly drag their heels. Let’s hope they don’t.

On the bright side, the specialty pharmacy which stocks and sells the Sylatron takes credit cards, so we’ll be racking up lots and lots of American Express Membership Reward points for travel.

I had never quite imagined that a legal drug treatment, especially one you inject yourself, could be so expensive. Although, that said, Yervoy – the late stage melanoma drug – runs about $130,000 for four injections over a three month period. Ouch. Hopefully I will never have cause to experience that!

It is also interesting to note is that the medical bills thus far submitted by doctors and Concord Hospital on my behalf through just my first surgery in April and related follow ups is now over $45,000. I would guess that the cost of my second surgery, plus the overnight stay at the hospital and the visiting nurses visits will be at least twice that.

The lesson to be learned here is to make sure you have decent health insurance with prescription drug coverage, since cancer can happen at any time, to anyone, as I have learned. Age is not a factor for certain cancers, and if you look at melanoma in particular, many 20 and 30-somethings are being diagnosed nowadays, and without insurance, if the cancer doesn’t ruin their life, the medical bills will.

Cancer takes a toll, and the only option for real survival is to forge forth and face each new challenge as best you can, and rely on the spiritual, emotional, and physical support of your loved ones as you do battle. And make sure you’re insured too. A few thousand dollars a year for medical insurance can save you hundreds of thousands of dollars later on. This is one time I’m glad I am anal retentive about insurance in general.

For now, I expect to be making more forays on foot around Boston in the coming days and weeks, and trying to regain my former weight and physique (which wasn’t anything great to start with but definitely better than what I have now), interleaving it with various client projects. And I plan on celebrating next week when the darned drain finally comes out of my body and I will be physically whole again (disregarding the missing 21 lymph nodes and slab of skin on my thigh for the moment). And in case you’re wondering about my wide excision skin graft site, that is healing nicely too. It should be sealed up completely in a week or two.

 

While I wasn’t particularly concerned about the earth being ravaged by earthquakes yesterday as part of the widely publicized rapture, I did find myself relieved that nothing of earth shaking significance happened anywhere. I also find myself pitying the thousands of Rapture believers for whom reality contrasted sharply with their fervent beliefs and expectations in what was going to happen to them. It’s a lesson that those of us who have been diagnosed with cancer can learn from as well. And before you suggest I’m being negative, let me point out there’s a difference between hope and expectation. I hope and wish that I will live a long time. However I limit my expectations to the near-term, as that is all I can judge and evaluate.

Part of the reason for limiting expectations is that cancer in general is the result of a mutation, and this cellular mutation exists and adapts in a very Darwinian fashion. Much as we try to kill the cancer cells, the cancer cells are trying to survive. So, while surgery and treatments may eliminate virtually all of the cancer cells in a body, there’s no proven, consistent way across all patients, to completely eradicate all residual cancer cells in a patient. In some cases, it works out, but the statistics and probability of complete “cure” vs. almost guaranteed relapse vary based on the type of cancer involved. According to “The Biology and Treatment of Cancer”, there are around 200 different kinds of cancer cells identified so far, with most unique enough to require targeted treatment. And it’s not uncommon for cancer cells to mutate further during some chemotherapy treatments and become resistant or immune to those treatments, requiring a new one to be applied or even developed (from “The Emperor of All Maladies”).

I understand from friends who have and have had cancer, as well as from my readings, that the stress and anxiety that surrounds the regular scans they have to see if their cancer has returned is high, because, of course, it could signal having to go through a whole new round of procedures with an uncertain outcome. And for better or worse, after my upcoming treatments are complete, I too will be victim to a (hopefully long) life of uncertainty, especially as my form of melanoma, which I’ve been told is “nodular melanoma” – a very aggressive form, evidenced by the progression from nothing to multiple tumors as large as 2.2cm in my lymph nodes in just four months, is known for a not-insignificant rate of recurrence. Statistically, because I also had cancer cells appear outside the capsule of a lymph node (i.e. extracapsular extension), that also increases the likelihood that I will be revisited by melanoma at some point in the future.

A new friend, who was diagnosed with melanoma about five years ago, but has recently had a relapse with complications, explained to me that he and his wife found that the best way to cope with the impact of the disease on the mind, soul, and body was to live in the moment, and live one’s life – something which he says is not always easy when you are dealing with your own mortality. My piece on priorities a week ago kind of brushed on this idea, but I’m still coming to grips with the idea that I perhaps should not be making substantial long term (multi-year) commitments, which is causing me to reevaluate whether or not I want to continue pursuing my Master of Fine Arts in Photography degree (which will take another 3-4 years of time, nearly full time), or simply charge forth and spend that time in a more intensely productively fashion.

So, my future is a perpetual work in progress, taken a day or a week at a time.

The Fog of Cancer Therapy

In order to be true to the title of this post, namely the various “Fogs” I am experiencing, I would like to share both updates and current perspectives.

Last week I had my first meeting with the clinical oncologist under whose guidance I will be receiving my post-surgical cancer therapy. As I discussed previously, the purpose of the surgical lymphadenectomy (also referred to as a “complete lymph node dissection”) I had two weeks ago was to try and surgically remove the cancer from my lymphatic system before it could spread further, or more realistically, as much of it as possible. Cancer is insidious because it is a cellular mutation, meaning that if even one cancer cell (which is a very tiny, microscopic entity indeed) is left behind, over time it can multiply and spread. Using a macro-level procedure like surgery, while potentially good at removing larger aggregations of cancer cells (usually in the form of tumors), is not great at the cellular level for the simple reason that a surgeon can’t see and distinguish such cells.

That’s where adjuvant therapy comes into play. After surgery is over, additional steps are taking to try and destroy any vestiges of cancer that may still be present. There are two type of post-surgical treatment to be considered – localized and systemic.

In the case of my melanoma, the clinical oncologist suggested that both localized and systemic treatment be applied. The localized treatment would be via radiation, specifically in the area where my lymphadenectomy took place, namely my right groin region. The systemic treatment involves drugs which would be applied regularly to fight any cancer cells that might be left anywhere in my body – in the whole system (hence “systemic”).

The clinical oncologist discussed a number of options with me, including the stock treatment for stage III melanoma patients, namely Interferon-α, a new form of Interferon-α recently approved by the FDA called Sylatron, a late stage drug also recently FDA approved called Yervoy (ipilimumab), and some other experimental options via clinical trials.

Yervoy has the issue that it has not had any studies done yet for Stage III melanoma patients – only late state, Stage IV (for which it was successful as these things go). That meant that, considering the roughly $130,000 price tag for a four-course treatment of Yervoy, insurance would not cover the cost, nor was there necessarily any reason to believe it would even have any effect on Stage III melanoma – it might, but it also might not. The doctor mentioned that there was a clinical trial under way now for Yervoy in Stage III melanoma patients, but that it was a placebo-based trial (meaning that some participants would receive Yervoy, and the others placebos), and the results wouldn’t be known for years (since in Stage III there are no tumors to measure to determine effectiveness – it would be solely based on relapse timelines). Furthermore, Yervoy has potentially serious side effects, including liver disease and even (in very rare cases), death.

My wife Linda and I had discussed the possibility of clinical trials previously – which are basically where someone volunteers to be a subject in an experiment in the hopes the experiment is successful in producing a positive result, as compared to some sort of baseline. That baseline can either be a group of patients in the trial using an established treatment, or alternately, being given a placebo but being told it is the experimental drug. I have a tough enough time leaving things to chance, so the idea of being part of a clinical trial where there was a chance I would get a placebo and no treatment just was not for me (never mind that Linda would have vetoed any such participation as well because of the uncertainty).

Seeing as the Yervoy and other clinical trials currently available were placebo referenced, that ruled those out as options.

I had already known from my research that Interferon, which has been a standard Stage III melanoma treatment for over a decade, would be the most likely option for me, even though its side effects, while not generally harmful, are pretty miserable. Interferon works by boosting the immune system, with the hopes the immune system will then be better able to eradicate melanoma cancer cells on its own.

For many Interferon patients, the primary side effects are fatigue and flu-like symptoms – worse during the initial month of daily 90 minute long IV infusions of the drug, and a bit better during the subsequent 11 months of thrice-weekly self-injections. I’ve learned that it’s not uncommon, due to the impact of these symptoms for people to end their treatment early because they just cannot stand the physical burden any longer. Regular Interferon, because it is in effect a naturally produced protein, is rapidly absorbed in the body, with all traces gone shortly after infusion. So the body has this big spike of Interferon at the time of injection or infusion, and then spends time trying to get back into equilibrium until the next application – so large peaks and troughs.

The recent approval and release of Sylatron appears to provide a more manageable solution to Interferon side effects. Sylatron is still the same type of Interferon as the traditional treatment, but encapsulated in such a way that it hangs out in the body for a much longer time. In very simple terms, you could look at it as similar to getting your aspirin or acetaminophen in a time-release form. This means that the extreme peaks and troughs are no longer present, and the body can better adjust to the sustained use of the Interferon. The flu-like symptoms and fatigue are still there, but not as intense in most people.

Also, because of the persistence of the pegylated Interferon, the dosage and application is less intense as well. Sylatron is applied weekly, and during the first two months, a higher dose is used, after which a lower stable dose is switched to. All of these can also be self administered. The trial in Europe in which Sylatron was used was intended to be a five year treatment, but the average time patients continued with the Sylatron injections was around 14-16 months apparently, but with long term relapse rates which appear to be better (lower) that traditional Interferon, with the added benefit that people were not as sick and, in fact, were able to live mostly normal lives during treatment.

The end result of the first consultation with the doctor was to confirm (as I had previously hoped) that my best course of treatment would be to go with Sylatron as my systemic treatment.

Assuming my insurance company doesn’t set up any roadblocks, I should be able to start my adjuvant therapy in early June after my (damn) drain has been removed, and all my healing from surgery looks good. My next appointment is at the end of the month to try and narrow things down further.

The Fog of Radiation

So, with Sylatron as my systemic treatment determined, the next thing to deal with was my radiation therapy. There has been some literature which has suggested that radiation therapy is not particularly effective for melanoma, but on the flip side, it has also not been shown to be ineffective. What I was advised was that in situations where there was a fair chance of residual cancer cells, such as my extracapsular extension and activity, radiation therapy’s benefits outweighed the risks.

When you’re faced with the potential of relapse at some point down the road, you definitely find yourself more inclined to do anything you can which has a decent chance of postponing when that point will be, and thus I found myself quite willing to go ahead with the treatment.

After a consultation on Friday with the radiologist (who specializes in oncological treatment via radiation), I feel pretty good about the process.

First, let me detail the side effects of localized radiation in my right groin region:

  • It will likely cause sterility, preventing me from fathering any more children. Not a worry – I’m quite happy with the two I have fathered naturally (Krystyana and Sebastian), and my two “adopted” children, Aisha and Chip.
  • During treatment it will cause a light burn and sensitivity on the skin’s surface in the irradiated region. This can be treated with creams.
  • I may permanently lose some pubic hair. May look strange, but other than nurses, doctors, and my wife, and myself, no one is likely to see that, and if they do, it would create an interesting point of discussion.
  • I may end up with darker skin in the same area as treatment. Hmm. Let me think – skin discoloration or leaving cancer cells behind in my body to grow and wreak more havoc? Yeah. I’ll go with skin discoloration.
  • May increase incidence of lymphedema – swelling in my leg due to excess accrual of lymphatic liquids. This can be a real hassle, but the doctor pointed out that there are trained massage therapists who specialized in lymphedema therapy, and the use of compression stockings (I’m wearing one now) can mitigate the problem somewhat. I can certainly work with regular massages (although Linda had to ruin the warm and fuzziness of massages by pointing out that they could be painful, like a deep tissue massage can be).
  • Could undue any healing that is still going on. This is a real potential problem, but with a practical solution, namely not starting my radiation therapy until later in the summer.

Ultimately, the decision that both doctors seemed to agree on (with my concurrence) was to have me start on the Sylatron treatment for the initial two months of high dose injections, then get baseline and diagnostic scans performed, dry out from Sylatron for a couple of weeks, and then start my radiation therapy. The therapy will involve 4-6 weeks of daily (weekday) 20 minute radiation treatments at Mass General Hospital, meaning I would be tied to being in Boston during that time – no travel possible so that I wouldn’t miss any treatments.

During the initial set up in preparation for my treatments, the radiology department would create a special mold for me to lie on for best exposure to the radiation source and then create a 3-D mapping of the region to be irradiated. And I get some tattoos on my body as an added bonus. The tattoos will be used as orientation and reference points for the radiation treatment to ensure that radiation positioning is exact.

The radiation treatment would be performed via Intensity-Modulated Radiation Therapy (IMRT), which is a very modern computer-controlled radiation delivery system which can control the intensity and angle of the radiation in a way to ensure the target area is getting all that it is supposed to while minimizing the amount of radiation in surrounding tissues and organs. I was also amazed to learn that the IMRT mapping involves Voxels – volumetric pixels (something some of my fellow graphics geeks may be familiar with), as a way to represent the radiation values and accumulation in a three dimensional space (a little more on this can be found here). Very cool technology.

The Fog of Frustration and Pain Medication

So now, here I sit, under a fog of frustration and pain medicine as I wait for my body to heal. I’ve figured out that I’ve been something of an invalid in terms of mobility for most of the last seven weeks, and I am sick and tired of it.

I’m used to doing things for myself, and it’s difficult for me to ask others to do otherwise simple things for me because I can’t without hurting myself in the process. Stupid things, like putting on socks, for example.

I also hate not being able to go out without causing myself grief. I had to miss a recently departed friend’s Celebration of Life yesterday, and would have loved to have gone out for dim sum in Boston’s Chinatown this morning. But no go with my current infirmity. I had hopes to get to New York City next weekend to see a friend perform at Carnegie Hall, but I’m guessing that’s not going to happen for me either. Very frustrating! It’s like being in a virtual jail – no tangible bars, but restrictive nonetheless.

The healing of my surgical area and graft site are progressing well enough, but I have a lot of pain and discomfort from swelling and from the area where the drain tube exits my body, and as a result have been on doctor-prescribed rest and pain medication. Add to that that I have to sleep on my back (because of the drain) on a bed that feels too soft, and the result is back pain (goes away when I get up) and not more than about six hours of fitful sleep during the night. I may well start having to nap during the day to catch up, a practice I never really adopted. Now may be the time.

The other frustration is that until my drain is removed, I cannot start my Sylatron treatment, and my drain won’t get removed until the amount coming out is less than 30cc per day (I’m at around 200cc right now, down from close to 500cc a week ago, so some progress is being made). And until I start my Sylatron treatment, I won’t have a clear idea of when my radiation treatments might start (although the best guess is mid-August or so).

Fortunately, while not being mobile, I am able to sit in my comfy office chair for decent periods of time, and work on my computer and some consulting client commitments as well.

And I can slowly shuffle around my kitchen for short periods of time, which resulted in a suitable substitute for my dim sum cravings this morning, crispy pork belly with compote of cranberries and cherries, depicted below:

Crispy pork belly with a cherry and cranberry compote

Crispy pork belly with a cherry and cranberry compote

The one thing, however, above all others that helps me overcome my frustration with being infirm is the support of my family, especially Linda, without whom I would not be able to manage at all, and without whom I would be an absolutely nut job now (or, as my kids might suggest, more of a nut job).

The Fog of Future Treatments

Okay, so may this isn’t a fog, really, but one of the things that has become known about cancers is that they occur because of gene mutations in the chromosomes of damaged cells. The most successful cancer treatments so far, across all cancers, have been ones that target specific mutations that exist in the cancer cells but no other normal cells in the body.

In melanoma treatment, there’s been a pretty amazing amount of work in such mutation specific research in just the least half-decade or so, the result being that there are a number of new treatments under development to address the various mutations (a great, but highly technical paper on this subject by several authors, including my own oncologist, can be found here).

What this means is that if the genetic mutation of the cancer is known, and that mutation is one for which a treatment is being developed (and tested), the greater the likelihood of effective treatment. And such targeted treatments are also potentially likely to have fewer side effects because they don’t have a systemic impact on anything other than affected cells.

In my case, just over a week ago, I had requested that cancer cells from my recent lymphadenectomy be genetically typed by the hospital’s lab. That process will take up to a month. The results won’t make a difference in my current treatment plan as the only clinical trials being done on mutation-specific drugs are only for late stage melanoma patients.

However, the really good thing about getting my cancer classified now is that if I do have a relapse some years down the road, it will vastly speed the decision on how to treat the relapse. With the speed and breadth of melanoma research at present, the likelihood is very high that there will be a number of targeted treatments available – even three or four years from now – that would help me fight a relapse, should that occur (although the hope is that won’t be the case).

In Conclusion: The Fog of Boston

Keeping with my fog theme, I would like to close by saying that the fog we have witnessed from our 37th floor apartment (36th actually, as there is no numbered 13th floor in the building) here in Boston has been spectacular this last week, with visibility so low at times that we could not see the street below us or the lights of the nearby Zakim bridge outside our windows. Back on Bonaire, the weather is never really cool enough to create fog, so this has been a remarkable climate contrast for us.

Not sure when my next post will be, but I’m guessing it will be after my doctors appointments on May 31st with an update on what’s going on with healing, drains, and treatment. Until then, please hang in there – that’s what I’ll be doing too.