After a brief meeting with my oncologist this afternoon to go over what to look out for with respect to the side effects of ipilimumab – skin rashes and gastric issues – so we could let the hospital know that it’s happening.

The doctor said that the soonest I might experience the rash (the most likely side-effect) would be about two weeks from now.

My newly found cousin Carolynne who is also on ipi as part of a clinical trial says that after her initial four doses she had no side effects. I got to see her today because she had an appointment with my oncologist directly following my appointment, and she and her husband Mark came to visit us in the waiting room of the infusion center

The infusion of the ipi took place in Mass General’s Yawkey Outpatient Center on the 8th floor (one floor below where my oncologist holds his consultations. The infusion center is also where chemotherapy patients get their chemo treatments – each infusion area includes a TV and several chairs for guests, as well a chair designed much like a La-Z-Boy but not nearly as comfortable (for the patient).

This combination can create raucous neighbors as we discovered today. The guy visiting the patient in the infusion area to my right spoke loudly about everything, and seemed to be a know-it-all about every subject. Noise canceling headphones along with a music source are coming with us for the next infusion in three weeks to help drown out adjacent conversations and televisions.

We learned that the ipi infusion process takes over two hours as the nurses first have the hospital pharmacy prepare the ipilimumab infusion (267 ml for me based on height 6’2″ and weight (195 pounds clothed) – which takes about 45 minutes. The infusion is administered via IV (intravenously) over a 90 minute period along with time spent in the waiting room we spent about two and a half hours waiting to complete the first infusion of ipi.

The next excitement comes about on Friday afternoon when we go shopping for a used vehicle to use while we are living in the house in Chester. If anyone has good suggestions on how to not get ripped off by used car salesmen, let us know.

The next medical treatment takes place in the form of a Brain MRI on February 9th – a week before the second infusion of ipi and I may have another set of body scans a few weeks later (between the second and third ipi infusions) which may impact a booked trip home to Bonaire in the middle of March – the results of the scans would be more important than going back to Bonaire for a couple of weeks, I figure.


(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.