My Melanoma Treatment with Sylatron Has Finally Started!   June 16th, 2011

(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.

 

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This entry was posted on Thursday, June 16th, 2011 at 17:23 and is filed under Health. You can follow any responses to this entry through the RSS 2.0 feed.Both comments and pings are currently closed.

35 Responses

June 16th, 2011 at 17:38
Liz Says:

Jake,

So glad you finally got your therapy started! I’m so glad you will not have the same side effects as “chemotherapy”, as they suck big time!

Yesterday I just finished my final radiation therapy for my Ca, but today had to be admitted to the hospital (outpatient, thank goodness) for infusion of platelets due to the side effects of the chemotherapy I received a week ago.

How wonderful to be a pioneer for a new drug!!!! I so hope it works out well for you and the side effects are minimal and your insurance continues to pay faithfully! Enjoy Boston and give hugs and kiss from me to your family!!

Liz

June 16th, 2011 at 17:49
Cynde Says:

Jake, so good to hear treatment has begun. I can only imagine it provides a little bit of relief to get this phase started so you can move to the next. Well wishes on the travel/work next week. Thinking of you all!

Hugs,

Cynde

June 16th, 2011 at 18:09
Carole Says:

Hi, Jake! Very happy to see you have started your therapy. Still glued to your updates and still sending prayers, positive thoughts and bright white healing light your way. Ayo. Carole

June 16th, 2011 at 18:20
Hannah Says:

Started your treatment.. AND the Bruins win the Stanley Cup.. What better of a day could it have been!

Healing thoughts coming from here…
hannah

June 16th, 2011 at 18:49
Barbara Leary Says:

Good news on the start of treatment AND that your insurer will cover the drug!! Your very thorough reports are bound to be inspiration for many. I hope the center will add your blog to it’s patient information for folks in the same boat.
XXOO, Barbara

June 16th, 2011 at 19:25
Steve Says:

Jake,

Glad you’ve started treatment. I can’t think of a better trailblazer than yourself. Your courage and ability to communicate your journey will, no doubt, provide many after you with the strength and hope to fight for their health.

Thanks You

June 16th, 2011 at 19:33
Jenna Says:

A few things:

1. Of COURSE you’re the first person to be doing this. Honestly, I expect nothing less from you.

2. I’m glad everything is working out thus far…that your insurance company is cooperating, CVS can deliver the drug and that the injections themselves are fairly easy (for you).

3. You’re working next week? Your post exausts me and I’m not even the one with cancer. You are seriously amazing.

4. I’m so happy to read all the good news. I hope everything is nothing but fabulous for you and your family from here on!

June 16th, 2011 at 21:24
LaDonna Says:

as always….you are such an inspiration!!!

HUGS

June 16th, 2011 at 22:43
Meryl Says:

Jake, Thanks for the update. We are familiar with Neulesta (sp) But thought it was already pre-measured in syringe? And equally expensive, pretty amazing price for a shot!

Love your links that open up to the drug and its chemical makeup and interactions.
Wished I could have stopped by to see you as I was so close to Boston..but you and your family must be overwhelmed..just being away from home.
Can’t tell you enough how much I/we think about you and “the Richter clan”…if you need anything…we are only a call or an email away….
You missed your calling on the research! xxooo

Love you Lots! Please tell Linda and the kids the same.

Meryl and Steve

June 17th, 2011 at 09:38
Gayle Gregson Says:

Hi Jake,Thankyou for your update. You are commencing a battle of which I hope you have the upmost glory. All the very best to you and your family.

June 19th, 2011 at 16:24
Mel Says:

So glad your treatment has started and is going well. I wonder if the extra Sylatron (240 mcg) could be donated somehow. Well, just wishing you a Happy Father’s Day! Your courage and strength are an inspiration.

June 21st, 2011 at 02:18
Kathleen Dewhurst Says:

Jake..your writing is fascinating reading for me. So happy to hear things are going well and that you have good fortune in being first in line for what could be the most effective treatment. Thanks for keeping us informed…love to you and family…

June 21st, 2011 at 16:50
Lisa Barclay Says:

Jake, you are an inspiration and I really enjoy reading about your treatments and where your journey with cancer has taken you. I feel like the information your sharing will be so helpful to others that are dealing with similar things.I wish only the best for you and your family.

June 22nd, 2011 at 15:25
Leslie Says:

I’m happy to hear that treatment is underway.

When I read about the cost of the medication and its set quantities, my first thought was: Do you think it could be practical/have any benefit to set up a program or website so that locally viable patients could “buddy up” and not let unused portions of sylatron go to waste?

June 22nd, 2011 at 21:55
Jake Richter Says:

Leslie,

That’s an intriguing idea. I will ask my oncology nurse about it.

Jake

June 23rd, 2011 at 12:14
andrea Says:

My husband started sylatron this past monday! I am very interested in your side effects. His injection was about 3 pm on monday and by 630 he had temps over 104 which took us to the ER where we were admitted! I am not happy ANYONE has to go through this, but would love to stay in contact with you since we are kind of in the same boat. Email me please…so we can exchange info and/or thoughts and stories. Perhaps you would even like to speak with my husband as you two would be the only ones knowing how each other feels. If not, good luck and GOD BLESS!

July 1st, 2011 at 17:06
Vince D Says:

Hope the side affects are not too bad. Fascinating reading. Best wishes for you and your family.

July 7th, 2011 at 14:32
Wallace Says:

Just wondering how the treatments are going. Hope you are doing OK.

July 7th, 2011 at 19:54
Jamie Says:

How are you doing, Jake? How are you feeling? What do they do to check the progress (or should we say digress) of the treatments, scans? Thinking of you and hope you are doing wonderfully!

July 9th, 2011 at 11:48
Jake Richter Says:

Hi Jamie and Wallace,

I just posted an update on the treatments here: http://jake.me/Z5ea

Thank you for caring!

Jake

September 14th, 2011 at 20:33
Angelia Gawne Says:

Hi Jake
Thank you for your story. I start my treatment of
Sylatron next week. Hope yours is going good. I will keep
track of your progress.

Sincerly Angelia Gawne

September 16th, 2011 at 13:01
Jake Richter Says:

Hi Angelia,

Good luck with your Sylatron. Another Melanoma Warrior friend has recently completed the induction dose and is now on the maintenance dose. He was saying his symptoms – fatigue and loss of appetite – were rough during the first two months, but things are better on the lower dose. So, if you end up with those side effects, remember that it will get better!

Jake

December 30th, 2011 at 15:15
Susan Owens Says:

Jake,Thank you for your blog. I found it while looking up Sylatron. I have been diagnosed with stage III melanoma of the scalp this summer. After 3 surgeries on my scalp (53 staples) and radiation treatments, I’ve now completed 5 doses of the Sylatron. Side effects were minimal at first but now having pretty heavy duty fatigue and memory loss. the doctor doesn’t know if the memory loss will be long term or not.
You are so positive about this whole journey. Thank you for sharing. You will be in my prayers. If you have a chance, would love to email.

January 27th, 2012 at 20:38
Dezur Kenna Says:

Jake, I just learned today that I am starting Sylatron next week. Finding your blog is a godsend! I am grateful for the photos and all the specific description you include. This whole thing is new to me – having been diagnosed out of the blue the week before Christmas with perianal malignant melanoma. Yep, in there – Who knew! This followed pathology on a hemrrhoid excision and was a total shock. This particular melanoma is so uncomon there’s no treatment protocol. So after as much excision as possible, my oncologist says Sylatron appears to be my best option. I appreciate your sharing all this incredibly helpful information!!! My blog, http://www.ripeproject.com, was starting to align with a new show I’m creating. As with yours, I think my original intent is about to broaden…

January 27th, 2012 at 23:34
Jake Richter Says:

Hi Dezur,

Sorry to hear about your diagnosis. Another fellow melanoma warrior just finished his first six months on Sylatron and declared it bearable with just fatigue dragging him down. I hope the Sylatron works for you. Make sure to get frequent scans so that any spread of the melanoma can be detected.

Melanioma will definitely mess with your plans for your new blog, Good luck. Please keep me posted on your progress!

Jake

January 28th, 2012 at 21:40
Diane Fulford Says:

My husband was diagnosed with stage 4 melanoma in Feb.2011. They removed all the rumors. They did radiation. He. Has been taking Sylantron since July 5. He has had two sets of scans since his surgery they have been clear. My question is how long should we do the Sylantron ? He does his treatment every other week. His blood count is low. I fear he will get sick with a serious infection. His doctor wants him to stay on Sylantron at least another year. What do you think?

January 29th, 2012 at 00:10
Linda Richter Says:

Based on what we have read and been told 1.5 years on Sylatron is the goal. If he can make it, he really should since it will likely improve his chances to stay cancer free. Congrats on his clear scans so far.

February 7th, 2012 at 19:16
jim wolfe Says:

Hey Jake, Hello from a fellow sylatron user in Oklahoma. I’ve been on Sylatron for 6 months now ( 1 injection per week)The fatigue is the worst of the problems.I have no sickness at all.You have to watch temp really close and my oncologist recommends a mask when you are going to be in crowds.The main thing you have to watch is you blood work.They do blood work every week to keep track of your white blood counts etc. your immune system is compromised so you have to really really be aware of germs. I wash my hands 50 times a day now.They wanted to send the Sylatron direct to me also but I didn’t trust myself to do the injections because of feeling bad and thinking I’ll just miss just this one and end up not doing proper doses. One thing I will tell you is the hurting back and legs and flu like symptoms are being controlled by a drug called Cymbalta. Its actually used to treat depression and also fibromyalgia.Jake check with your doctor about it but i’m telling you I was like a new person after it.You started your treatments in June? How are you doing? I was told my treatments would go on for 5 years weekly.I had stage 3. I’ll close now but would love to hear from you or anyone else who wants to or needs to talk about this nasty thing that has invaded our bodies. Hope you are doing well, God Bless

February 7th, 2012 at 19:26
jim wolfe Says:

jim wolfe j1746@aol.com

February 25th, 2012 at 13:17
David m strawn Says:

Thanks for your insight. I am on my second dose of Sylatron .have had 2 excisions. .Side affects. Same as described. Mostly fatigue . Siteman center in St louis. And Springfield Clinic- Illinois

March 2nd, 2012 at 22:03
Becky Daniels Says:

I have stage IV melanoma that has now spread to my stomach.
I started on Sylatron yesterday.
About 3 hours after giving myself the shot I started feeling like I had the flu.
Today I’m still in quite a lot of pain but taking Lortab helps.
I am already on Cymbalta & will see next week about upping my dose.
It would be good to hear about how others are doing on this drug.

March 19th, 2012 at 11:37
Barbara Says:

My son gave himself his third Sylatron shot Thurs. The side effects the first week started 2 hr later with feeling cold, then the killer headache. He had 4 hr of rigors that night followed by serious nausea. He spent Friday and Sat. down-for-the count and then returned to work Monday… by then just really tired with zero appetite. Second shot: no rigors, killer headache, spent 36 hr in bed with nausea and body aches that hit Sat. nite. Returned to work Monday feeling very tired, felt pretty good by the time he had to administer the third shot Thurs. Third shot: Headache, but not as severe, body aches etc. Was up and active/back in bed etc. all weekend but did see his girls play soccer and even power-washed the patio and patio furniture Sun. Back at work today. The first week was scary, but he has a great attitude and the symptoms have decreased each week. Looks like he’s tolerating the Sylatron a little better each week. If you just started, hang in there!

April 15th, 2012 at 13:32
Tammy Says:

you might want to look into Dr. Nicholas Gonzalez in NY, he has patients who were stage 4 melanoma 20 years ago who are alive & healthy today. I have melanoma & he’s my doctor. Uses nutrition, detox, enzymes. dr-gonzalez.com if you’re interested in finding out more.
Best of luck,
Tammy

July 30th, 2012 at 09:41
Brian DiBella Says:

Jake,

I have started taking Sylatron in April 2012 this year and have gone through the first 8 weeks of high doses. I am on my second half dose shot and was wondering if you are still taking the shot treatments to-date?

Thanks,

Brian

July 30th, 2012 at 15:07
Linda Richter Says:

Hi Brian,
I wish you all the best and definitely keep up the Sylatron. I know the side effects can be difficult to live with at times. I’m sorry to let you know that Jake passed away in June 2012 from melanoma. You can read about his struggle through the rest of this blog.