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!

Moving on to Dr. O'Connor

I havent updated in a while, since I thought this was sort of my dealings with transplant. But, unfortunantly, we learned my cancer had come back with avengence, in my spleen, liver, and several lymphnodes. I was told to go home and "get my affairs in order" Since that isnt an option, we went in search of the top doc in the country, if not the world on lymphoma, Dr. Owen O'Connor in NYC. Since my cancer has become resistant to chemo and my remissions are becoming shorter and shorter, its time to think outside the box. Besides cancer, Im otherwise healthy, so Im not going to go home and die.. sorry.. not my style. So I have began a drug trial using the drugs Vorinistat, which is approved by the FDA for Peripheral T cell lymphoma, and high dose Vitamin B12. Ive been on it for about a week and havent really had any side effects. Anyways, Skylar keeps me going, and I plan to dance at her wedding. Sorry for the lack of updates, Ive just been really pissed off my transplant didnt work.

Nearing day 100

well, its almost 100 days since I had my allo transplant with my sister as the donor. I have my PET/CT on Tuesday at 7am, so maybe wont have to wait for results. What will i do if it is positive? Theres always a 2nd transplant, but I dont think i have the strength to do another allo. Im so nervous, and scared that my life could, again, be turned upside down on Tuesday. I need some comforting thoughts. If all is clear, I can go back home to Knoxville.

My double vision is getting better, day by day, its starting to go away and just come when i am tired. I see the eye doctor this week to rule out GvHD of the eye, which is a routine test for exit transplant patient.

My mom has left to go back to Knoxville, and my stepmom Kathy is here and will take me home after I have been cleared. My mom goes back to work on May 1st. Its scary knowing Im going to be with Skylar by myself again with no help! Ive done it before, and I can do it again!!!

+90 Update

Not really anything to update, just awaiting my scans, tests, etc week after next to send me on my way to the long term clinic. In which Ill come back and have regular visits with my regular onc, and also my transplant doc every so often. My double vision still hasnt improved, so Ill be going to see an Neuro Oncologist to see what the deal is. We know that my optic nerves are swollen, just dont know quite why. Its either a BCNU toxicity that has just shown its ugly head, or a condition called Pseudo-tumor Cerbri. Im also have either a viral GI bug, or another episode with GVHD of the gut, we'll see if the steriods work. Well I guess I did have stuff to update! Hope all my fellow cancer fighters are fighting the good fight!

Day +73 Updates

I got my MRI results, and they were negative, along with my CT of my head. So now, I will go to an Opthamologist to see if they can't seem to fix whats going on with my double vision. Can you believe it? My 100 days in Nashville is almost over. I CANT WAIT TO GET HOME!!! I MISS MY KITTY CATS! The anti-rejection medication Cyclosporine is really causing me some problems with pain, but my transplant doc was very adamant that I stay in a therapeutic range to avoid problems with chronic gvhd. Skylar is growing like a weed.. especially her teeth! So that has been a sleep hinderer, its molars too. But more updates when I have them!