New Melanoma Drug

This is for patients in a *much* more advanced stage than myself. But is good news in general. From the BBC:

PLX4032 works by seeking out and destroying tumour cells carrying the BRAF mutation implicated in 60% malignant melanomas.

This could not only help to shrink the skin cancer, but also delay its spread.

Currently, only a small proportion of people – less than 5% – live more than two years if their cancer has spread around the body.

Early findings

In a phase I study involving 16 patients with BRAF-positive melanoma, over half saw the extent of their cancer reduce by at least 30%.

Patients treated with PLX4032 lived for a median of six months without their disease getting worse and more than half experienced significant shrinkage of their tumours.

This included patients where the cancer had spread to the liver, lung and bone.

becoming a melanoma expert

one of my colleagues called me today.  i talked to him for a while.  just chatting about the situation.  but also, an acquaintance/friend of his was just diagnosed with Stage III Melanoma (what I have).  but there are complications — something in the intestines that is (maybe) not the melanoma, it is something else.  he’s having blood in in his stool; i think it sounded like he had noticed something a while ago, but hadn’t gone until the blood showed up.  apparently the doctor said something like ‘i wish you had come six months ago.’

hearing that story makes me so glad i reacted in the way i did.  i swear, i wonder how long it would have been until i found it, if i hadn’t forgotten to trim my toenails, and if it wasn’t so dry in my apt in the winter, i wouldn’t have scratched the back of my dry dry calfs, and i wouldn’t have caught my toe on the lesion and yelped, and looked down to discover that new mole.

actually, i know when i would have seen it.  K saw it and asked what it was.  I told her i had gone to the dermatologist, and he said it was either a blood blister and going to go away in four weeks, or to come back to have it removed.  so it would have been maybe six weeks later.

my primary care physician (whom i totally have a crush on) called me when she found out (via doctors reports.)  she was pretty amazed/shocked herself.  she said “you know, you saved your own life by finding it and acting on it.” and she is not the kind of person to make exaggerations.

anyway, it was great to talk to my colleague today.  i enjoyed talking with him.  but it was a little weird being the melanoma expert.  i mean that is largely why he called.  he wanted to give his acquaintance/friend some info from my experience, and to get my doctor’s info.  its not something i really *want* to be an expert on.

also, it was a bit of pretend-normal.  talking to him, i got up for it.  i felt better talking to him.  i was concentrating.  using all my energy to be lively.  trying to be upbeat.  charming.  make jokes.  laugh at his jokes.  etc.  in the process i make it seems like i am doing better than i am.  partly b/c for that moment i *am* doing better.  but also b/c i don’t want to appear not well.  it is, to a certain degree, about appearances.

pretend-normal.  tomorrow i restart the Interferon.  back to life in the slow lane.  no appetite, no energy, no motivation.  i have been really anxious.  i took extra anxiety medication this morning.  i don’t know if it helped.  i rode my bicycle hard.  i think that helped.  i was breathing really hard; the kind where you get a headache in your ears.  that is such a sign that you are working out hard.  i have not worked out that hard in four months?  it sure feels good.  though who knows when i’ll be able to do it again.

130 tomorrow is bloodwork.  hopefully i pass, and get the drugs.

Appointments Galore

My Dermatologist made me an appointment with a MOHS surgeon that following Monday.  SM basically insisted that she come with me.  I thought I didn’t need it, but boy was I glad she was there.

This whole period was full of accelerated learning, and radical changes in my own self image.  From fit to sick.

February 25th, 2008

I went to the dr just now. Just consultation. I go back thurs for a Narrow Margin Excision, where he will remove the remaining bits of The growth. Next Tuesday I go up to Columbia to a different Dr, for a consultation about next steps.  My understanding is he will probably recommend a Wide Margin Excision and a Sentinel Lymph Node biopsy. They will both happen in the same procedure. Not sure when that will happen.

Will know more next Tuesday.  In the meantime, I’m feeling okay.  The new info doesn’t really calm me down that much, but it doesn’t freak me out further.

The other thing I learned today is that Lymph Node biopsy is a euphemism for extraction. Because they are so small, they basically have to remove it to get a sample.  They used to remove all of them, but b/c of some side effects, they now only remove the sentinel node (the first one)

The key is still whether it has spread to the lymph nodes.  The dr said that all things considered, he doesn’t expect it there, but he thinks the dr at Columbia will recommend checking just to be sure.

Hello World: Melanarrative

I am a 30 year old Brooklynite who was diagnosed with Stage III Melanoma in February 2008. Today, I was meditating through my second session of chemotherapy, and came to the conclusion I should be blogging all of this experience.  I have been sending emails out to my close friends, but it all forms a coherent narrative.  A Melanarrative, so to speak.  It all came to me.  Meditating to Brian Eno’s Music For Airports.

There have been a lot of changes in the last four months.  A lot.  Like meditating.  I only started that two weeks ago.  At the insistence of of the Psychiatrist when he proscribed me Klonopin. He told me how aggressive he was about treating things with drugs, but three times told me I needed to learn how to meditate.

I have been writing emails to my friends and family from the beginning.  I will continue to do that, and post much of that here.  I will also return to those emails and post them here as necessary.

I am a creative person who does things kind of like this blog for a practice, but I feel strongly that this remain an anonymous endeavor.  Some of you reading this know who I am.  I put my trust in you to keep it anonymous.  Not because I am ashamed of what has happened to me.  But because I do not want that to become *who* I am.  It is something I have.  And experience I have had.  But not *who* I am.

I am writing this because it is a way for me to work out my thoughts and feelings.  And maybe someone else out there will find it useful, or interesting, or similar, or different from their experience.

I am writing this because I have already forgotten what it felt like the day before I found out my diagnosis.  I am writing this to preserve my own memory.