A blog about us…and journey with Melanoma

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.

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One response

  1. emily-the interferon debate is a tough one-from our experience-marcus did not work through the first month of high dose-it was too rough. he did go back during the shot stage, but he only tolerated about 4 months due to his liver enzymes going up-but everyone is different-no one tolerates this the same. in marcus’ case, only one lymph node under his arm had 20 cancer cells in it. and all other lymph nodes (about 25) that were removed were negative….and a little over a year later his cancer returned….SO…our question was-“did the interferon really work? was it worth it?” looking back on it-the answer really is-who knows?!! i mean who’s to say if he did nothing-no interferon-nothing-would the cancer have returned sooner? all we know is, at that moment in may 2008-after all the lymph nodes under his right arm were removed and they told us at that point he was cancer free and our only option to fight this beast from coming back was interferon-we took it-he took the only option given to him-so when he looked back he could say at least he tried-and he would have no regrets-and that is where you and mike need to get-to a point where you completely decide-one way or another-and have no regrets!!!! prayin for you both-this is a tough road you are traveling-i know-been there-still on it 😉 love you so much and prayin that not one more family has to deal with this crap!!!

    February 3, 2010 at 1:12 pm

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