THANK YOU

I just checked my paypal and realized I had been getting donations without getting emails to thank people. I just wanted to say THANK YOU to everyone who has donated to my Lymphoma fund. It really helps with my travels to and from New York City, where I see Dr. O'Connor. God Bless you!

An update on me:
Ill be heading back to NYC tomorrow, to see Dr. O. I was having problems with the Belinostat and was receiving IV fluids everyday here in town, and my kidney function wasnt doing so well so I have been taken off the drug until I speak with the doc tomorrow. I have felt wonderful being off the drug, but unfortunantly, I have to take something or my lymphoma will grow back. I pray there is something else we can try! I just wanted to send a heartfelt thank you to everyone that has supported me through donations. :)

Belinostat so far

So, my scan showed that my tumor had actually shrunk since my last treatment before starting Belinostat, and was still stable and just on my adrenal gland. The Belinostat has been really hard on my GI tract, vomiting, nausea, and tons of diarrhea. Lomotil and Immodium has no effect, so Im just trying to keep some moistness in my body. I feel like crap, and hope this gets better. I may have to have a dose reduction, as now Im taking 2000mg. But hopefully the side effects are just my body reacting to the drug. I was warned before starting this drug that I was be the pooping princess. So no more scans til March to see how the drug is working. So thats all I have right now!

Its back

I guess most of you know from my facebook and webmagic that the lymphoma is back. Crappy diffuse large b cell again. Ill be starting a new drug called Belinostat which is another HDAC inhibitor like SAHA was. I wonder what would happen if you took both of them? Hmm.. That would be an interesting question for Dr. O. Im sure I would have no white count if that happened. I know none of us really know when we are going to leave this earth, but Im getting really tired of having this uncertainty of even walking my daughter to kindergarten on her first day. (Shes 2) What am I going to miss because of this crap? What point in my life did I do whatever I did to make my cells start going psycho? Im having a pity potty day. I mean, how many drugs are there left? I know they come out with drugs every month, but when are they just going to stop working all together? I guess I dont want to know, but I really dont want it to be any time soon. I always thought I would die an old woman with grandchildren, and maybe great grandchildren. But I know, that wont happen. = (

Biopsy tomorrow

For those of you who arent on facebook, I thought Id post an update. My adrenal mass that was found on my previous pet scan 4 weeks ago has grown 6mm. It is a small mass, but I have been taken off my trial drugs until the pathology has come back. The SUV of this lesion was 31.9, so Im pretty sure we are looking at relapse. So, Dr. O hasnt given me a game plan of whats next so we'll see. Im pretty upset that the trial drug has only worked for about 6 months. I think the size of the lesion now is about 2.8cm. I havent been having any other symptoms, except extreme anxiety. So Dr O doesnt know what this is, but he doesnt think its lymphoma, but Ive been told that before. So Im not very trusting. Anyways, I thought Id let you know whats going on in my world... I guess Im just going to have to get used to managing this disease instead of curing it. That pisses me off. I hope everyone else is doing well. Love you guys!

MORE REMISSION!

Whose is still in remission? I AM I AM!!!!

REMISSION

I just wanted to let everyone know that as of the beginning of August, I have been in a complete remission! The trial drugs are working! Just to remind you, I am on Vorinostat and Niacinamide! Im sorry it has taken me a while to update my blog but I have been painting the town red!

Not much news

Everything seems to be going ok with the oral drug Vorinostat that Im taking. I dont know if its working or not, but I sure hope so! Ill have another scan at the beginning of August to see whats going on. The last scan I had showed 2 liver lesions. My lab work has been great. Im just hanging out with Skylar and being a mommy! Please say a prayer for our friends Adrienne and her mom Alison, Adrienne is in the hospital with some pain issues related to some new chemo, and my friend Hillary who has a scary new bump that is feared to be cancerous. So start that prayer train! I can also use some prayers as Ive been having some abdomen pain since starting this new drug. I hope its the tumor dying and not growing. Ill update when I have some new info!