(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.