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!

Lots of new info

I have had a rough last week, was put in the hospital in renal failure with a potassium of 7. They got that all worked out, and I was able to come back home. So that was scary. Im back on the mend. I have been seeing double the last few days, so Ill probably be having an MRI on Monday. I had a CT scan of the brain and it didnt show anything, so I dont know. I hope they can figure it out, because its really aggravating seeing 2 of everything.

+30 Pet/ct scan results...

NEGATIVE FOR LYMPHOMA! WOOOOOT!

Day +26

Hello all! i havent updated in a while, because, well, there hasnt been much to tell! which in my book is excellent. I had a clinic appt today, and everything looks good, my white count is 3.6, reds and platelets are normal, reds are alittle low. My creatinine is stable, but still high at 1.53. Of course it is Cyclosporine induced, but still nerve racking to know my kidneys are hating this drug so much. Im getting close to bone marrow biopsy time to see how much of "me" is left, and how much my sister is. Hopefully Im almost 100% engrafted and my sister. Its cold here in Nashville, and Im ready to go home. I have to be here till I am at 100 days. I also have no access because of blood clots in both PICC lines I had, so Im on blood thinners. I feel good, Ill update more later!

Day +20, Monday, Feb. 9

Kara's Mom again. Kara is being discharged from the hospital today! We are so excited to be getting out. The last few days have been pretty uneventful - a few issues but mostly normal post transplant issues - She will have daily visits to the clinic this week for blood work and follow up to make sure everything is progressing ok. They will continue to monitor her for GVHD & any other complications. It's a little scary for me leaving the hospital where they have taken such good care of her (I'm not a very good nurse!).

DAY +15 - Wednesday

Kara's Mom again - Praise God! - Kara is improving. Last week was a very rough week but her WBC started slowly coming up on day 10. It was a little early so we didn't get too excited for a couple of days until the counts kept going up each day. So it's official - Katina's stem cells have found their way to her marrow and are starting to grow! (Go Katina!) Kara's WBC was 1100 today and her platelets are almost normal. Her mouth is improving and she is beginning to eat again. From her lab work it seems that her internal organs survived the high dose chemo with no long term damage. There is a fine line between killing the cancer and killing the patient. She still has a long road ahead but she's headed in the right direction. Now we start watching for the graft vs host (GVHD). The doctors say that a little GVHD is good because Katina's stem cells would attack any remaining cancer cells if there were any. The doctor mentioned today that if everything goes ok the next couple of days Kara might get out of the hospital by the weekend. We are excited about that!

Day +7, Tuesday

Kara's Mom again, sorry for the lack of updates. Each day has been getting worse with the mucositis and her mouth/digestive tract. I won't go into details but it is BAD. Each day when the doctor comes in he says "it will be worse tomorrow" and I am thinking how can it get any worse?? But it happens....I feel so helpless as her mother watching her in pain but there is absolutely nothing I can do. A few more days though and she should gradually begin to feel better as her sister's cells start grafting. Hopefully soon she will feel like posting updates again.

Day + 2 Thursday

I am Kara's Mom, Lynda, doing the posting for her today. She is not feeling very well today- the chemo is starting to catch up with her. The main thing is her mouth is terribly sore. She is also very tired. This is no surprise and was expected. The GI doctor came in for a visit and has ordered TPN which is basically nutrition given by IV. This will make things easier on her GI tract. This will only be for a couple of weeks until Katina's stem cells start regenerating.
Labs are looking good. Now we just wait for those stem cells to find their way to her marrow!

Day -3 to Day +1

Not really much to report besides getting chemo, and getting some mucocitis coming in my mouth and throat. I havent had all that much energy since getting my sisters stem cells back. She collected over 6 million! We just needed 4, so Im guessing they will store those in case I need a booster at some point. I did have a little hypertensive episode while getting the cells, but nothing alittle Norvasc by mouth couldnt fix. Im still having some bone pain despite being on a Dilaudid drip. Im hoping this pain will go away as soon as my sisters cells start making babies. Im at 0.4 WBC count right nowl and I antcipate dropping more than that. Platelets and RBCs are all within nornal range. Sorry for the lack of updates, Ive been pretty tired. My sister has some pics on her blog, so be sure to head on over to her site (Whitworth family blog) to see those. Anyways, more later!

Day -4

Day -4, nothing really different. Same chemo, just a little more nausea. Me and my sister hung up about 100 pictures of family and a bazillion of Skylar. I miss her so much! More of the same tomorrow, my sister is having some bone pain, so that means shes makin some bone marrow stem cells! Woot! Keep those prayers coming! Everything is going ok so far.

Day -5

Well, not much going on today, Ill get VP-16 and Cytoxan around 2pm and those will last about an hour. I get premedicated with Decadron, and Zofran for nausea. I get pretty nauseated after the Cytoxan, and its pretty much goes away with Phenergan. My sister is staying with me while she gets her Neupogen shots, and shes showing some signs of bone marrow activity with some on her bones aching.. which is good for me! Ill report more tomorrow!

Day -6

Hello all! I finally have been admitted for transplant. I got here to Vanderbilt at 7:30am, and got a room by 9am. For some reason admitting didnt know I was coming! That was all squared away, and now here I am. I had a dose of VP-16 and a dose of Cytoxan today. I had a little nausea with the Cytoxan, but a little Phenergan fixed that right up. I also met with the Palliative Care team today, to manage my bone pain, and anxiety. Dont worry, it doesnt mean hospice or that Im dying, they just handle things like pain and anxiety with more thought than the transplant docs who mostly focus on the transplant itself. They have already put me on a Dilaudid PCA pump, so my pain is a little better. To remind you, my bone marrow is damaged and failing, and while it continues to try and produce cells (causing the pain) it doesnt. WBC level is already down to 1.6 today from 1.8 yesterday. Platelets have dropped from 141,ooo to 114,ooo since yesterday. My sister got here last night around 9:30am, and will start her Neupogen shots in the morning at 8:3oam in the clinic. We hooked the playstation 2 up and played that for a while, and decorated my room with pictures and my little angel statues. Anyways, Im feeling ok, just really nervous about what all this chemo is going to do to my body. So please pray for this transplant to work, and that my organs will be protected. = ) So thats about it for day -6! If you would like to send me something, I dunno, color me something! I love getting mail! Send it to:

Patient, Kara Lee
Vanderbilt University Hospital, Room 11007
1161 21st Ave South
Nashville, TN 37232

Ill update more tomorrow, I hope everyone is doing well! PRAY PRAY PRAY! Hes listening!

Kara = )

Admission

I will be admitted on Wednesday, if all goes well. This has been ridiculous the scheduling mess this process has been. I have a bone scan and a few xrays tomorrow just to have to see if anything shows up causing my bone pain. Doc thinks its probably just my bone marrow trying to regenerate, but is unable because of damage. My white blood cell count hasnt come up since my last visit and am stuck at 1.8 WBC and dropped from 55% neutrophils to 4.5%. So the bone marrow isnt working. Anyhow, Ill update more when I know more! Katina, my sister, will be coming in tomorrow night.