First Week of SAHA…

I started SAHA a week ago Tuesday and it’s taken a little getting used to…

This drug has really caused me to be fatigued and for the first five days on SAHA, I slept 18 plus hours a day. To be honest, I really didn’t see that coming. Dr. Kirschbaum (Dr. K) prescribed me this awesome drug call Provigil and I’ve got energy again. I woke up a few days ago, and I realized that I haven’t left the house in a week, which instantly gave me “cabin fever”… So, I grabbed my keys and drove around for a little while, and then I went to the beach and watched the sun rise, it was such a great feeling.

I get fourteen days of SAHA and then I get 7 days off… One very cool side affect of this drug is weight loss and I’ve dropped 10 pounds in nine days. Thank God I gained a little bit of weight before I started SAHA. I started feeling back to normal on the 7th day. (p.s. - if you have written me and I have not written back, I promise, I write you back by the end of the weekend)

Dr. O is in California this weekend, he’s giving a speech at a lymphoma conference in Los Angeles, I’m not going to the conference, but our family is taking him to dinner on Saturday evening. I am so excited to show one of my favorite New Yorkers the best of Southern California.

Thank you for your continued prayers.

Fight 2 Win,

-Alese

Tuesday is THE Day...

I go to City of Hope early on Tuesday morning for a bone marrow test... *Sidebar: If you know anyone who ever has to have this procedure done, make sure they get a general anesthetic, this procedure is very painful. Some doctors will tell you can't have a general anesthetic, if they tell you this, they’re lying.*

Anyways, as soon as I wake up, SAHA will be in my hand! WHOO HOO!! I really am so excited to start this stuff; I have to remind myself it’s a pill. No needles, no IV, no all day visit to Adult Day Health (ADH).

Okay, I have a confession, after two years of boycotting and refusing to be any part of myspace.com, I have become a member. As I type this, I am still stupefied by the fact that I agreed to do it. But, it turned out pretty cute and if you want to see it type in www.Myspace.com/AleseCoco - Ohevey, I don’t know what I just got my self into, lol :-)

Anyways, I will keep you posted as I start SAHA and update you if anything new happens :-)


Fight 2 Win,

Alese


This is a picture of me and Joe at a Yankee game... Joe loves the Yankees!

To SAHA...

The verdict is in, the scan showed the same thing that the City of Hope scan showed: very little disease. So to keep it in check Dr. O and Dr. Popplewell have decided to give me SAHA, which I have to tell you makes me very happy! I am really excited to take part in a drug that could help change the face of Hodgkins' treatments and manageability.

I am up with my Aunt Anna, Uncle Rich and cousin Heidi this weekend, we are just enjoying the serenity of not being in LA.

I hope you all have a great weekend, God bless & thank you for all of your prayers and support.


Fight 2 Win,
-Alese

To SAHA, Or Not To SAHA...

So here's what's been going on... I had a scan at City of Hope a few weeks ago and the results showed that all cancerous nodes have gone down in size by 90%-WAIT IT GETS BETTER- and that there is little if not immeasurable disease!! Everybody stand up, it's time to do the happy dance!!

It was time to celebrate and I'm in love with frozen yogurt, and I am not exaggerating when I tell you that I eat it almost everyday. Our local frozen yogurt shop Yogurt Zone, has a challenge, if you can eat a quart of yogurt in 10 minutes you get your picture on the wall... I DID IT! I don't even know how healthy it is for someone to consume so much so fast... And I swear as I was doing it I thought to myself, "this is it, I'm going to beat cancer and die from overdosing on frozen yogurt." And no, amazingly enough I did not get one brain freeze.

I haven't had GND since the scan and to be honest I am totally okay with that. There are a few technicalities though, the scan was done at City of Hope and since I am on a Sloan Kettering clinical trail, I must be scanned by a Sloan Kettering machine. I am happy to be in New York, I LOVE the Fall, all the trees change to these gorgeous colors and the weather is still nice, it's the perfect time to be here.

I was scanned at Sloan yesterday and while there I stopped by to see the awesome Miss Lindsey Brass, she has had her transplant and is now recovering. Please continue to pray for her and her family, and that she starts to feel better fast. We love you Linds!

I saw Dr O today, our meeting was about not only the scan but future treatments and deciding if SAHA is going to be our next venture... The results of my Sloan Kettering scan have not come back yet, but based on the City of Hope scan Dr. O is jumping up and down. I am staying in New York and extra day because he ordered a PET scan for tomorrow morning. So, I'll be here until Wednesday.

As Dr. O put it, our main question right now is, "to SAHA, or not to SAHA"

Fight 2 Win,

-Alese