Detroit Bound for a Clinical Trial? - 7/25/2011

This morning Kurt and I went into the oncology office for blood work and then an appointment to see if I could have my 2nd treatment of Ipi.  All of my blood levels went back up - which was great news!  The nurse practioner said that my oncologist wanted to talk to me as she got results back from the melanoma mutation testing that we have been waiting for.

My doctor came in with a smile on her face and said that my mutation came back as a BRAF mutation.  While she explained this in further detail to us, I understood her explaination but not how to explain it to someone else.  There is currently a clinical trial underway with the doctor that my doctor used to work with.  She would like me to get in on that trial (as it will end in 4-6 weeks and I would not be able to get in until next year then).  So, within the next few weeks, we will be going down to Detroit to start this clinical trial.  While I do not know much yet, I know that it is in pill form (called Vemurafenib) which is currently not FDA approved but they are hoping that it will be by the end of this year.  My doctor did indicate that while Ipi has a 30-40% chance of reacting to the melanoma, this drug currently has a 50-60% chance! 

Kurt asked how long we would need to be down in Detroit and she said that because it is in pill form, they will send us home with pills and I will probably have to go down monthly for check ups.  (So, basically, we should only be down there for a day.)

I had to have an EKG today and will have a CAT scan tomorrow - things that are needed to be sent down to be a part of the trial. 

Glad to hear this promising news!  And, as Kurt said to me, "There ain't no party like a Detroit party!"

Update on Fevers and Treatment #2

First, since I can't remember if I blogged about our trip to the ER on Friday night, I will mention that first. Thursday I saw my oncologist and she suggested switching from tylenol to aleve so I did that night. Friday my temp was constantly running anywhere from 100-102ish. At 5ish, it was running @102 so I took my last Tylenol. About 6:30 and many attempts to lower it, it was 102.6 degrees so Kurt took me to the ER. It took a while to get in and by the time they took my temp, it was 100.6... And I was clammy. My fever broke and by the time we left, my temp was 98.9. Over the weekend, if I had a fever, it was low grade!

On Monday, July 18th, I was back at the oncology office - I was supposed to get my 2nd treatment and find out how blood cultures came back from my appointment last Thursday.
My blood work from in the morning showed that my platelets were too low for treatment so they plan for the second treatment next week. They also said that my magnesium was low so they gave me an IV of that before I left ...and my potassium is still low so I got another prescription for that.

As far as the temps, my doctor seems to think it is just from this treatment and my immune system building/fighting! She seemed to think the weird rash that I had that started around the 3rd of July was from this treatment. (I got an email from a friend who said her mom had a rash start on her ears and went down her body after radiation and her dermatologist said it was from the radiation... So this could have been too as I was just done with radiation shortly before that!)

Hope my platelets go up this week so I can get my second treatment next week!! (Oh, and no temps would be good too!)

Generally Not Feeling Well - 07/15/2011

The week of July 4th I started with a rash that started on my ears and moved down my neck, chest, and down the rest of my body.  It was extremely itchy - not sure if the heat and humidity played a part in making it worse or not but I am glad that it is healing and going away!

Last Saturday night I started running a low grade fever again.  We had a pretty busy Pioneer Days week so Monday we decided that we would just take it easy and lay low.  When I woke up that day, I wasn't feeling well... fever, tired, etc.  So, I slept lots the next few days.  Each night I would wake up and my fever during the night had gotten higher - and I was having low grade fevers during the entire day.  On Thursday (7/14), I finally called my oncologist and went in to see her.  She wanted to check for infections by drawing blood, urine test and chest xray.  She did say that sometimes cancer can cause fevers.  Her office called this morning to let me know that my potassium was low so they have called in some pills to my pharmacy.  We will go back on Monday and I'm scheduled to get my 2nd treatment.

Hopefully these fevers will end soon!

UPside On My Dear Friend, Casey Arkens - Week of 07/04/2011

For those who may not be on facebook, I wanted to share the following link to the TV6 website as my friend/hair stylist/etc., Casey Arkens, was nominated for the UPside:  http://video.wluctv6.com/global/video/flash/popupplayer.asp?vt1=v&clipFormat=flv&clipId1=6019544&at1=Community&h1=The+UPside+7-4&flvUri&partnerclipid&rnd=25093460

This is the information I put on facebook - Thank you to the person who nominated Casey Arkens for the TV6 UPside! I'm thankful to everyone for their support but definitely grateful for Casey's friendship and her smile! (Casey ~ you are SO deserving of this and much more! Definitely made me again shed a tear or two too! Love you!!!)

10 Day Checkup of 1st Treatment - 07/06/2011

Today I had my blood drawn and saw the PA at oncology to check to make sure all my counts are still doing well after being 10 days post-treatment.  Almost all of my counts came back above where they were before treatment.  (They figure they were down a bit because of radiation the week before...)

All in all, I have been feeling pretty well.  The day after treatment I took quite a few naps (totaling about 5 hours total) but not sure if it was due to rainy weather or treatment!  This weekend was also tiring being at my parent's house but it was a lot of fun and relaxing as well!  Got to spend lots of time with family, friences, etc!  One other issue... I have a rash on both of my ears/neck/parts of my face but the PA wasn't sure what it was from exactly - radiation treatment, a change in shampoo due to the halo being on and waiting for the 'holes' to heal or just because I am me and my skin is super-sensitive!  He gave me a prescription to try to relieve the itching and heal it!  I'll start it tonight... or possibly now since I've thought about it!

I'm looking forward to the festivities for Pioneer Days this weekend and spending time with some friends who are here that we haven't seen in at least a few years! 

And then, on Monday, July 18th, I will have blood drawn again and see my oncologist before my 2nd treatment.