Steady and Holding

The first week went well. I made friends with all the nurses on the floor, can run the EKG machine myself, and even convinced the nurses to put tape on those overly long EKG straps to save time in the daily sorting--now if only they'll pay me as an time efficiency manager...Oh, and the treatments are going very well too! The daily trips to the hospital were fine; I am really getting to know the finer points of the parking garage. Yesterday, we had our long Tuesday, with all its tests and fastings, and today I got to take home my RAF265 in 14 little lovely brown bottles, packed in what, sadly, looks like a Mike's Pastry box (and so should contain North End cannolis instead of anything else). However, besides feeling, on occasion, very tired, I am doing very well. So far, this medicine has been uncommonly friendly. I don't know if it works, but I recommend it :)

I hope you all are enjoying the spring stirrings. (We even made it to the park today for a little bit!)
With love,
Aimee

An apple juice a day...

Will and I just got home from our big introduction to the world of RAF treatments. It was a long day, but a pleasantly unremarkable one. We arrived at 8 am to the hospital, whereupon I was assigned my own room and my own nurse. She started an IV, took blood, hooked me up to the EKG pads and took my heart readings once every six minutes for seven readings in a row. This whole time, there was some fierce debate about whether I actually could get the drug today as no one had told me I should have fasted from midnight and I had happily eaten english muffins at six in order to fortify myself for the long day ahead. But finally, I was given the go ahead, the lab order was sent, and the drug came up around ten. (There are these great thick blue chemo gloves and yellow gowns the nurses have to wear around patients once the drugs are present that make it nearly impossible for them to do any of the fine detail work that they need to do--it is a bit funny.) The drug itself was not too bad; they mix it up with apple juice and I drink it in one swallow. It tastes a little funny, but we've all had worse. Then there were hourly EKG readings and blood draws, but, after three hours more of fasting, there was also lunch. They sent us home around 6:30. After today, I'll go back for about an hour daily for the week, and then will just have the once weekly long day in the hospital and take the drug at home myself on the other days thereafter.

I feel amazingly well. I may have a harder time as the month progresses and the drug accumulates in my system, but...we'll see. I've been so lucky so far...

With love :)
A

Happy Easter! And an RAF update.

Alleluia! Happy Easter! We had a lovely, full day. The bunny was VERY good to us; the kids were completely thrilled with their baskets. We went to mass with Will's family, to my sister's house for the big egg hunt and dinner, and then to Will's sister's house for dessert. Needless to say, Xavier and Tilly slept well last night. Here are a few photos:





And to backlog a bit...here is the messy egg dying fun:



As for my treatments, they have been pushed back a bit. There were some problems in organizing all the scans that needed to be done. So, instead of starting in the morning tomorrow, I will have two days of scans and tests, and the treatments themselves will start, hopefully, a week from tomorrow.

Thank you, as always, for all your amazing love and support. We are so blessed to have such dear family and friends.

Xavier the Story Teller

Recently, there was a video circulating the internet of a three year old girl, recounting what happens on the movie Star Wars. Xavier adored her tale immensely, yet still felt that it was fundamentally flawed. You see, this other three year old left out the most essential parts, such as the decapitation of robots, and her synopsis was totally devoid of the other side of the Star Wars saga-- LEGO Star Wars (for those who aren't familiar with LEGO star wars, it's a video game on the playstation that lets you play out the entire six episodes with LEGO characters). The following is his attempt to set the record straight about what really happens on Star Wars:

Here are some of my favorite parts:

Xavier: Do you know how Luke cut off C3's [C3P0's] head?
Daddy: (very matter of fact) That never happened....
Xavier: Only when Obi-wan gave Luke his light-saver.... Luke cut off C3's own head.
Daddy: That doesn't happen in the movie...
Xavier: Hmph... But ... but I saw that in Lego Star Wars.
Daddy: Lego Star Wars is different from the actual movie.
Xavier: (Look of disbelief, rebellion, and frustration with the bureaucracy of parents... as if to say, "Where's your imagination, Dad?")

Many minutes later...

Xavier: (just to spite Dad) And then Luke ...Pshhfff ... cut off C3's head ....

RAF 265

In case you wondered, we are going with what is behind door number two...RAF265. I'll start two weeks from today (we hope--I have to meet with the head and neck man about a biopsy tomorrow,* and work in the usual scans, checks, and balances). Mostly, besides a few long days in the hospital once a week, I'll be taking the drug in powdered form at home, once a day, and briefly checking in with the hospital for essentially daily blood etc tests. We'll do one round of 28 days, check my stats and decide if we go on from there. We met with my doctors today and signed the consent forms. The side effects don't look too bad and the work they've done so far looks hopeful.
We'll let you know how its going.
lots of love
A

* My nurse tells me the head and neck doctor is one of the top ten head and neck specialists in the country. I don't know why I need to know that; a biopsy seems like a pretty simple procedure, but at least we know that nobody biopsies like Dr. Frankenthaier!

Clinical Trial Options

Dr. Atkins gave Aimee 2 options at this point, both clinical trials. And we need to decide between the 2 within the next 2 weeks.

Option 1:
- a phase III trial (meaning that the medication is safe, and they are trying to determine its precise effectiveness.)
- It combines a RAF pathway inhibitor (Sorafenib) with chemotherapy (carboplatin and paclitaxel, developed in the 80's). The RAF pathway inhibitor ideally should prevent cancerous cells from multiplying.
- side-effects are typical of chemotherapy-- hair loss, nausea, etc., i.e., all that nastiness.
- It's not entirely clear what the response rates are for advanced melanoma.

From the Consent Form:

[Sorafenib] may slow the growth of your cancer by stopping cancer cells from multiplying and growth of vessels that support cancer cells. Carboplatin and Paclitaxel in combination with [sorafenib] may have additional effect on your cancer that has spread or cannot be treated with surgery.

Option 2:

- a phase I/II trial (meaning they don't know how safe this drug is. The trial is in part to determine the proper, safe, and effective dosage. It's also investigational-- meaning they don't know what kind of effects to expect. They've only tested it in a laboratory.)
- It involves an oral dosage of RAF265 (another cancer growth inhibitor) given over various periods of time.
- Side effects are generally unknown ("This is the first study of RAF265 in humans"). But at the same time, they can extrapolate probable and possible side effects. It is predicted to be moderate compared to option 1.
- From the consent form:

Labratory studies have shown that RAF265 slows or inhibits the growth of melanoma cells and melanoma tumors.

Dr. Atkins recommends the 2nd option for a couple of reasons. First, he thinks it has more potential to be effective. Second, if Aimee takes the first option, she can't take the second (this is the way a lot of clinical trials work-- once you've had some treatment, it precludes you from others.). But if she takes the second option, she still has the possibility of the first.

Both trials will take place here in Boston. We asked him whether there are other options in DC or Houston, and he said that Houston is doing the same thing, and DC is focusing on a treatment that Aimee is ineligible for (wrong blood type).



So-- after all that ... We're leaning towards the second option, mostly because Atkins thinks it's more promising and it won't cut off other possibilities.

Marching Forth

My nurse from Beth Israel called yesterday to save us our scheduled trip down to New Haven today. The latest scan results were not what we'd been hoping for; the MDX 010 isn't working. The cancer has grown and spread a bit further but, thankfully, still has not moved to my brain or other organs. Will and I went into Beth Israel this afternoon to discuss new options and ideas. Dr. Atkins had two basic suggestions, one a drug combo plus localized chemotherapy, the second an inhibitor drug. On the positive side, both would be outpatient treatments here in Boston. We are reading over the details and consent forms now and deciding where we go from here. We'll let you know where we're headed when we figure it out.
with love,
A