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.
Monday, March 24, 2008
Thursday, March 13, 2008
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 ....
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 ....
Tuesday, March 11, 2008
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!
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!
Wednesday, March 05, 2008
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:
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:
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.
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.
Tuesday, March 04, 2008
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
with love,
A
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