A blog about us…and journey with Melanoma

Archive for February, 2010

NY Times covers the heartbreak that is Melanoma..and a miracle drug

BRAF Drug Scans

riddled with melanoma

The New York Times is publishing a series on cancer research and a miracle drug for melanoma. These pics are before and after scans of a melanoma patient only 15 days after taking PLX4032 – a drug that inhibits a BRAF gene mutation and has very little side effects.  The drug is in Phase III clinical trials and there are so many people who want to get into the studies that they have had to close the door to people who really need it.  Some people on the trial have relapsed and died while others remain free of tumors.  But on average it has extended the life expectency of the Stage IV Melanoma patient by 6 months.  I am hoping that they open the door for compassionate use after these stories are published.   Mike is being tested for the BRAF mutation – present in 50% of melanoma patients – just in case.

New York Times: Part 1 of 3: A Roller Coaster Chase for a Cure

http://www.nytimes.com/2010/02/22/health/research/22trial.html

New York Times: Part 2 of 3: After Long Fight, Drug Gives Sudden Reprieve

http://www.nytimes.com/2010/02/23/health/research/23trial.html?pagewanted=1&hp

VIDEO: http://video.nytimes.com/video/2010/02/22/health/research/1247467133833/last-chances-first-responses.html

New York Times: Part 3 of 3: A Drug Trial Cycle: Recovery, Relapse, Reinvention

http://www.nytimes.com/2010/02/24/health/research/24trial.html

VIDEO: http://video.nytimes.com/video/2010/02/23/health/research/1247467149391/uncharted-waters-fragile-hopes.html

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They grow so quickly…

Aidan Age 1

My baby doll - almost age 7 Aidan Age 6.8

A fine Irish 3 year old

Caitlin – Age 8

Elton John Age 3

Elton John Age 1


Phew! What a relief. Now what should I worry about?

Mike got his 6 mos PET scan results last Friday.   He is all clear – NED (no evidence of disease) is what they call it.  So we celebrated and words can’t explain the relief and joy.

My melanoma friends will agree – scan time is very traumatic.   Mike had to practically push me up the stairs of the doctor’s office on Friday. Knowing that this appointment could change our lives so radically is part of what bothered me – I didn’t want to face that again. Would the upcoming months be filled with chemo and illness versus proceeding with life “as usual”?   During the drive over,  I lectured Mike on what we would do if we got bad news….we could fly here for this trial or there for another.   People make fun of me for being so negative in this situation.  I am not being negative – I am trying to feel in control of something that I can’t control.  Being prepared for what happens next – good or bad – makes me feel better. So until July, when Mike has his next scans, we will work on enjoying our  “normal life”,  appreciating things that used to seem mundane, and I will try to stop worrying so much… but I won’t stop trying to be prepared.

Em


UCSF Melanoma Center is fun!

Well it’s kinda fun – for me more than Mike. 

Today Mike got his usual check up – they feel his lymph nodes, check weight, BP, etc.   All good!  His BP is down, but we cant figure out why he has lost only 4 lbs after starting his workout regime that consists of getting up at 5am and going to the gym 4 days a week and running 5 miles the other days.   He eats way too many pistachios.  That is my theory.

So why is it fun for me?  I get to talk to the people who know all the latest and greatest on Melanoma.  I rattle out all my favorite Melanoma terms – Breslow, anti-CTLA, Ipilimumab, Leukine, BRAF and they understand me!   In fact, I so impressed them with my knowledge, that I was invited to be on the UCSF melanoma tumor board (this was a joke of course).    Anyway, during the 1.5 hours a day I spend on the train –  I usually read Melanoma research on my iPhone.   Today’s visit confirmed that it was worth it. 

At UCSF today we reviewed Mike’s options, they gave us the prognosis numbers, and discussed his possible next steps.  We already know there arent many effective drugs or options for anyone with Melanoma.   Interferon is a immunotherapy (it is not chemo) and it is the only drug the FDA has approved for Stage 3.  You take a high dose for one month (5 days a week via  IV)  and then self inject at a lower dose for 11 months – or for however long your body can take it.  It is highly toxic with bad side effects including depression, nausea, fever, fatigue, etc.   Most people cant work during the first month.  Interferon’s track  record is not so good – stats show that it doesnt improve overall survival – it just prevents recurrence for some (5-10%).   But it is all that is out there – unless you can find a trial that accepts you.   The other option is to do nothing – but most people have a tough time doing nothing when they have cancer.  It was nice to hear from UCSF today that  both options are perfectly acceptable.  So we need to make that decision. 

That decision is the part that is not so fun.