Kara's Blog

Update 1/11/12

2012-01-11T06:18:00.000-08:00

So... Im at Columbia Hospital just hanging out waiting on my MTX to get started. Intraocular chemo was weird feeling, and made my eye pretty sore. No news really right now, just wanted to let everyone know I got here and am waiting for this party to get started.

Another quick update..

2011-12-19T19:57:00.000-08:00

It looks like Ill be going back to NYC for my week long visit on Jan 8th to Columbia/Presbyterian Hospital where my Dr. O is moving back to after a 3 year hiatus at NYU. I will also get my eye chemo right before I go in the hospital for high dose MTX with Leukovorin rescue, and intrathecal Ara C.. looks to be 6-8 doses.. so more treatment for the next 6-8 months to finish out the process, since we do it every 4 weeks. Its not looking like Im going to loose my hair, just maybe some thinning at most. I feel pretty good! Had a visit with my ONC here in town, and all my blood counts and liver enzymes were all stable. Yay! So, from now until Ive got to go back and put my boxing gloves back on Im going to eat, rest, and be merry. With my sweet Skylar pie!!!!

UPDATE 12/19

2011-12-18T08:29:00.000-08:00

Hello everyone!

Just wanted everyone to know I made it home ok! After long delay at the airport. Finally, my liver enzymes went back down to an acceptable discharge level. My kidneys seemed to do well with the high dose methotrexate for the CNS prophylaxis. Got my mediport, I tell Skylar its my "button" I get my medicine through, and that sometimes mommy needs a tune up like a car does. I wasnt expecting to get a major OVERHAUL, while I was up there, but thats ok.

So Im also getting lipsomal Ara-C in my spinal fluid too, that bathes the brain and the spinal cord, again, further preventing any sort of Central Nervous system involvement. I will start eye treatments with Dr. Marr at Sloan Kettering within the next 3 or 4 weeks. Mmm hmm, injections of chemo in the eye! Sounds pleasant huh? Ugh!

So as far as most of the docs are concerned this is an isolated relapse, stage 1A. Which is good news, but since its a blood/lymph cancer we have to treat the whole body IE:Methotrexate, Ara C, etc. So I evidently had a few stragglers left behind from previously. My bone marrow looked great, (they sucked some of that out too) So for the most part my Allo should be still working or Id have alot more disease at present.. is at least the way Im looking at it.

So for now, Im going to enjoy family, friends, good food, and good times and celebrate our sweet Jesus's birth.

I will follow up with my trusty Dr. Eapen here in Knoxville for some lab work, and neupogen shots, but as far as side effects, the only thing that is bothering me is my back where I had my spinal tap plus chemo, and my bone marrow biopsy site.. but the Ibuprofen seems to be helping with that. So out I go to go to the grocery store and get some food and other items to start wrapping gifts!

Merry Christmas, and Happy Holidays to all of my special friends!

NYU Langone Medical Center here I am!

2011-12-13T05:55:00.000-08:00

Hey friends!

So, Im settled in my room here, and got my 1st and last bag of chemo (high dose Methotrexate) for this visit. Phew.. alittle bit of nausea but nothing too bad. Now we wait for my counts to drop, and then the havoc on my mucosa begins,,, HORRID mouthsores.. but maybe it will be better this time. I also start Leukovorin tonight to rescue my healthy cells for the chemo.. Im not sure the time frame on that. Feeling well today! Hoping to get my port today, that was supposed to be put in on Friday.. but whatever, its ok. So Chad will be going home on Wednesday, and my sister will be coming up. Thats really all I have to report this morning! More later!

More on relapse 2011...

2011-12-10T20:26:00.000-08:00

Hi again,

I just wanted to give everyone an update on what the deal is. So the official biopsy will not be back until Tuesday, but the plan is to go ahead with treatment starting on Monday. Ill have a new port put in and have high dose Methotrexate for 5 days, and will stay in the hospital until its totally out of my system. I will also be receiving Methotrexate and Rituxan in my eye directly at some point, and maybe radiation to my left eye depending on what dr O, and Dr.Marr think.

So, my eye is feeling ok, just alittle sore and lots of blood still in it. Chad and I went walking around New York City today and had a pretty good time. Im missing my sweet Skylar terribly. I will be staying in NYU Hospital from Monday on, so feel free to send letters, etc. :)

Im feeling pretty depressed and defeated, but Ill get back on my feet here soon and get in fight mode. Just processing all this information is a lot.

Also, I hate to ask, but I must. We are hoping for some of our friends to donate some to the "transfer Kara to NYC Fund" so if you have any spare change, please donate through paypal on the front page of my blog. I know you guys will help :) I will have to come back to NYC for 6 months every 3 weeks for my week long stay in the hospital, and then Im sure Ill have to be up here for eye chemo also. So anything would help! Thank you so much!

I wish I had better news, I know many of you look to my blog for support and hope, but dont you worry, you'll have even more hope after I beat this again. :)

With Love, Kara

Relapse...2011

2011-12-09T08:42:00.000-08:00

Hello all..

Im sitting in an NYC hotel healing from my eye biospy yesterday. I started getting blurry vision and floaters about 3 weeks ago, and didnt think anything of it. It wasnt getting any better so I went to the eye doctor and they were concerned it my be a relapse in my left eye. So, I hopped a flight to my doctor Oconnor, and saw Dr.Marr the eye doctor here, and he is 99.9% sure it is some lymphoma cells. I just wanted to update, but I will give a more detailed account and what the treatment will be when my eye stops being sore from having a huge needle stuck in it! Follow me on facebook for more up to date updates.

July 20th 2011 Scan results..

2011-07-31T19:13:00.000-07:00

I just wanted to update all of my readers that my July 20th scans in NYC were clear! I have now been in remission for 1 year and 15 months! Rescan in November! Im praising the Lord!

1 year in remission!!!

2011-03-13T04:37:00.000-07:00

Hello all! So as most of you know from facebook, I had my scans March 9th, and it was completely negative, making it a full year in remission. BUT, I had my post Allo vaccinations before I left NYC on Thursday, (5- 3 in one arm, 2 in the other) and I woke up Friday running terribly high fevers (highest got to 102.9), body aches, chills, the works. So, I have been taking Tylenol around the clock, and by last night, the Tylenol wasnt holding my fevers anymore. I thought this was probably just my immune system reacting to the vaccinations, but I took a look at my arm, and there is a red, hard, area about the size of a baseball spot on my arm that was very hot and painful. So, I called the docs on call in NYC and she was suspicious of cellulitis in my arm, since my fevers werent so low grade. So now, Im on antibiotics and it seems to be helping. Some of the redness is going away.

So, now Im completely and totally freaked out. I was planning on getting my feet back in the water and maybe start working again. But I just dont know if its a good idea. Have these vaccines screwed up my immune system? Why was I so suseptible to infection? Is my next scan going to show something because of these vaccines? Have they freaked my system out?

Im just reminded of laying in the hospital bed at Vanderbilt, fever ablazing, and thinking that was the beginning of the end. Fevers scare me to no end, and so does being sick. Ive been well for a year now,and then this happens. I know it seems insignificant to some of you, but I guess its some sort of PTSD. I have gone back and forth as to wether to fill out the application to my old job, or just wait. Wait for a little longer just to make sure everything is ok after this vaccination/cellulitis scare. I dont know. Im afraid of the cancer coming back again, and if I do go back to work, Ill be dropped from disability, and my insurance through the state, what will I do? This is my main concern about going back to work. I have to have money. Disability isnt much, but its something. I would probably have to go back through the same process that takes about 6 months to get your first check. My doctors want me to go back to work. I just dont know that Im ready.

So in the midst of wonderful news, some concern.

REbirthday tomorrow January 20th, #2!

2011-01-19T07:48:00.001-08:00

So tomorrow January 20th, marks the 2 anniversary of my stem cell transplant. It was a terribly rough time, and 2 years ago I didnt think Id be typing about it today, and me seeing Skylar turn 3. So here is a photojournal of my transplant, my transformation to Katina 2.0 (my sister)

So we started out Katina receiving Neupogen shots to stimulae her bone marrow to make me some stem cells.

Katina all hooked up and making giving some stem cells!

Katina alittle chilly!

Our "sisters" willow angels.. a small token of thanks from ol' Kara!

There they are! Getting ready to go into their new home in my bone marrow!

Katina holding her cells, she made 6 million, and we only needed 2 million! Go Katina! And my momma in there too.

There they go!

Success!

So there you have it! After that was all downhill of course, having no white blood cell count for almost a week gave me fever spikes, random blood infections, infected access lines, HORRIBLE mouth sores, and terrible fatigue. But, Im here today to talk about it! And it all gets easier, if you take one day at a time.

So here we are today, living it up, after many relapses after transplant thanks to a miracle!

Merry Christmas!

2010-12-26T17:13:00.000-08:00

Just wanted to let everyone know I had a clean scan in December! That makes remission about at 10 months now on no drugs at all! Miracle cure? I hope. Praying for continued remission. I also wanted to post this movie quote from Lord of the Rings: The Two Towers because I felt like this is how I felt when I was going through treatment and hard times...

FRODO: I can't do this.

SAM: I know. It's all wrong. By rights we shouldn't even be here. But we are. It's like in the great stories Mr. Frodo. The ones that really mattered. Full of darkness and danger they were. and sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened.

But in the end, its only a passing thing, the shadow. Even darkness must pass. A new day will come. And when the sun shines, it will shine out the clearer.

Those were the stories that stayed with you. That meant something. Even if you were too small to understand why. But, I think Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of coming back only they didn't. They kept going. They were holding on to something.

FRODO: What were they holding on to, Sam?

SAM: That there's some good in this world Mr. Frodo. And its worth fighting for.

Happy New Year to everyone! Heath and happiness to all!

THANK YOU

2010-03-31T14:25:00.000-07:00

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

2010-02-02T07:51:00.000-08:00

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

2010-01-24T11:39:00.001-08:00

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

2010-01-11T08:33:00.001-08:00

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!

2009-11-06T17:44:00.000-08:00

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

REMISSION

2009-08-24T12:56:00.000-07:00

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

2009-07-16T10:45:00.000-07:00

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

2009-07-04T06:16:00.000-07:00

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

2009-04-26T14:00:00.000-07:00

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

2009-04-21T11:50:00.000-07:00

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

2009-04-03T19:08:00.000-07:00

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

2009-03-29T14:15:00.001-07:00

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...

2009-02-22T12:35:00.000-08:00

NEGATIVE FOR LYMPHOMA! WOOOOOT!

Day +26

2009-02-15T09:53:00.001-08:00

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

2009-02-09T06:49:00.000-08:00

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

2009-02-04T21:58:00.000-08:00

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!

2009-01-27T09:58:00.000-08:00

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

2009-01-22T14:50:00.000-08:00

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

2009-01-21T13:15:00.000-08:00

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

2009-01-16T19:16:00.000-08:00

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

2009-01-16T08:51:00.000-08:00

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

2009-01-14T19:28:00.000-08:00

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

2009-01-12T16:57:00.000-08:00

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.

Visit to Vandy

2008-12-31T17:33:00.000-08:00

Well, first off I just want to tell everyone my PET/CT scan was NEGATIVE for all signs of cancer! YES! Going in to transplant in remission greatly increases your chances of cure. Anyways, me and my mom hopped in the car and had the whole 2 day test fest, where they check just about every organ in your body to make sure its in good shape for transplant. So far, everything looks OK, my bone marrow still hasnt recovered for the Cytoxan I had 6 weeks ago, so we know now that my bone marrow has been permanently damaged.. so out with the old and in with the new! My sister Katina met us in Nashville for her donor workup, and of course she is healthy.

The information I received about the Allo transplant was alot to swallow in one sitting, talking about a 20-30% chance of dying before day 100 following transplant, and your chances of recovering if you were placed in ICU (very slim), and of course talking about all of the chemo side effects and things that could happen, kidney failure, resp. failure, liver failure, and of course talking about and signing a living will. NOT something I want to think about.

So, January 5th is the day I go in for preadmission, just the check up before my admit, the January 6th, I have my port a cath removed because it doesnt work and is a risk for infection, and then January 7th, I start chemo. So its all coming up very fast.

For my sister Katinas account, jump on over to her blog at the right, the Whitworth family blog. Thats all for now!

Sweet baby

2008-12-29T17:45:00.001-08:00

My sweet baby Skylar on Christmas!

Test Fest

2008-12-29T08:03:00.000-08:00

Hello everyone! I hope everyone had a wonderful Christmas! We spent Christmas in Memphis with my sister Katina and her family. It was so fun! Tomorrow begins my testing to be cleared for my Allogeneic transplant, its 2 full days of testing. The time is nearing when I will be staying in Nashville, approximately 2 weeks, maybe less before I start the transplant chemo which will be CBV, I think I have about 6 days of that, then Dday. New bone marrow is added from my gracious and willing sister, who luckily was a 10/10 match. Im really nervous about what this next PET scan will show, if Im still in remission or not. If Im not, Ill have to have additional chemo to put me back into remission before I start transplant chemo. I have a feeling that I am, but theres always that horrifying doubt. We are in need of funds extremely bad as the time nears for transplant for the upkeep of my little one Skylar. So please donate if you havent yet, we would so appreciate it. If it wasnt really needed I sure wouldnt be begging for money. = ( Anyways, Ill let you know what the test fest results are as soon as I know them! Katina also goes for her donor workup tomorrow, which will probably last all day, so hanging out at Vanderbilt tomorrow seems to be what we are going to be doing! Woot!

Help!

2008-12-16T13:53:00.000-08:00

I do have a very large conflict that I was wondering if you knew of any way to help. I will be inpatient for about a month, and then move over to the Villages at Vanderbilt to live for the following 2 months. They require a caregiver for myself, and for Skylar (my 14 month old girl). We have all but run out of money to hire someone to watch Skylar during the day, and all of the charitable organizations I applied for have run out of money for the year. Is there anyone who would be willing to help out by giving time, funds, etc? Maybe a fundraiser event? I hate to ask, but we are in dire straights and have exhausted all of our family here. Any ideas would be great.

I do have a paypal account if anyone would like to donate, there is a "Donate" button in the right-hand column.

Thanks, hope you are doing well and having a wonderful holiday season!

A major set back

2008-12-13T08:04:00.003-08:00

Well, after a week and a half in the hospital 3 hours away from home with neutropenic fever, and trying to collect stem cells, I am home. Fever was taken care of by the Vancomycin, but unfortunantly, I was not able to collect any stem cells. = ( I have the option of trying AMD3100 to try and collect, but my doctors are worried that putting unhealthy stem cells back in my body would just be setting me up for a relapse. So, what now? A fully myleoablative Allogeneic transplant with my sister being the donor. Shes a 10/10 match if you remember. I had so much Neupogen that I was thrown in to what is called Sweet's Syndrome. Believe me, its not sweet. You break out in to a huge rash that looks like chicken pox. They say my cure rate is even better with a matched sibling donor, and thats what we are looking for right now is cure. So, I get 2 weeks off, then back to Nashville to start the work up for an Allo. Im so upset I couldnt collect my own cells, but if they arent working, I sure dont want them back in my body. Thanks every one for the prayers and thoughts, Ive been really upset lately and down in the dumps about the lastest complications. Any info on Allos would be greatly appreciated. I think Im still in remission, but we'll find out after Christmas.

It begins...

2008-11-21T13:55:00.001-08:00

Hello everyone!

I had my Hickman line placed in my neck today for my transplant! They put me under conscious sedation, so I didn't know it. It is VERY sore.. ugh

Tomorrow is a dose of Rituxan, and Sunday is my long day with high dose Cytoxan, IV fluids and fluid medicine to keep my kidneys flushed out. Then, Monday, I get my first Neupogen shot to stimulate my bone marrow into overdrive so my stem cells will spill over into my blood stream for collection with a pheresis machine. I'll give myself those shots 10 days before I start the collection process... goal? 2 million stem cells needed.

That is my update for today, and I'm going to take a nap on this VERY chilly day!

Great news!

2008-11-12T13:50:00.000-08:00

Hello everyone! I just wanted to let everyone know that my sister is a match! If for some reason I can't collect stem cells for some reason, or end up needing a donor transplant, my sister will be able to donate! I am thrilled because there was only a 25% chance she would match! So thats great going in to transplant knowing I have a "plan B"!

Vanderbilt visit news

2008-11-07T07:05:00.000-08:00

Hello everyone! Im back from a long, test fest at Vanderbilt. Everything looks good as far as labs, tests, etc. We spoke with my nurse practioner Liz, and she gave us lots of information as far as transplant is concerned.

I have 2 options at this point for transplant:
1.) Undergo the standard of care regimen which includes a chemo called CBV, and would be done on a outpatient basis, of course I would have to come to the hospital daily for labs etc. I would be staying in an apartment in Nashville right across the street connected by skybridge.

2.) Participate in a Phase III clinical trial comparing the drugs Bexxar/BEAM, and Rituxan/BEAM. Its randomized that 1/2 will receive one regimen, and the other half the other. This trial seems to have great promise, and my doctors are thinking this might be the standard of care eventually in the coming years. The downside you ask? Ill be inpatient for at 37 days.

So I am pondering on these 2 options today, and waiting for my nurse to call back saying what the doctor truely thinks my best bet is.

I also had a bone marrow biopsy yesterday that is sore. They actually drew 20 tubes of blood... I counted.

Another option I might have is banking eggs. With these chemo regimens there is a high likelihood that I will be sterile after this, so if it just takes a couple of days, then I will probably do that. But, if its going to put my transplant back, then I dont think it would be prudent to wait. Theres still people out there who have had transplants that have went on to have more babies so Im not losing hope if Im not able to bank any.

I will receive a high dose of the chemo drug Cytoxan, sometime with stem cell mobilization, then use a growth factor for about 10 days to make my bone marrow go in overdrive producing stem cells so they will spill over into my bloodstream, thus being able to collect them through a huge IV I will have in my chest called a Hickman catheter.

Im all over the place in this post, but as of now, many things are up in the air right now as far as treatment is concerned, as I dont have the schedule for trials.

One thing that is for sure, we will be having a Merry Christmas, and a Happy New Year in Nashville.

Ill post more, when I know more! Just wanted to let everyone know my visit to Nashville was a productive one.

I also wanted to mention in my post, a very sweet young lady, Rina Fitria, who was a fellow lymphoma warrior passed away this week. She passed at Cancer Treatment Center of America in Tulsa, OK. Please keep her, her family, and friends in your prayers and hearts. If you would like to read of Rina's journey, please visit her blog that is listed on my main page.

Halloween 2008

2008-11-02T14:01:00.001-08:00

How it all started

2008-11-02T11:52:00.000-08:00

Hello!

My name is Kara Lee, I'm 26, and currently battling a relapse of diffuse large b cell non hodgkins lymphoma.

How it all started..

I was pregnant with my daughter, Skylar, and at my OB checks I would have a large amount of bleeding and pain, which my doctor, Dr. Edmunds, became concerned about. So she biopsied my cervix, expecting nothing to come back. Unfortunately, I was called into the office of September of 2007, to find that I had a large mass on my cervix about the size of a small lemon. I was told that I had a rare cancer for my age, and especially during pregnancy. So, due to the aggressiveness of this cancer, I was sent to my now oncologist Dr. Eapen. The general concensus was to expedite my delivery and begin chemo ASAP. BAM, end of September diagnosed with cancer at 25, first of October 2007, delivered a beautiful, healthy baby girl, Skylar, by c-section October 1st. I started chemo, a regimen called R-CHOP that same week. By after the 2nd cycle which ranged anywhere from 2-4 weeks depending on my blood counts, I had a significant reduction of the cancer that had been found extensively in my cervix, spine, breasts, and bilateral axillary lymphnodes.. by the 4th scan, there was no evidence of disease. I continued 2 more cycles for a total of 6.

For 6 glorious months I had clean scans. Unfortunately, at my 6 month scan a small place was detected by PET scan on my chest wall, next to my right breast. I then underwent a battery of tests, MRI of the breasts, bilateral mammograms, and ultimately a biopsy of the area. The radiologist was sure it was a blood vessel, and initially was afraid to biopsy it because of the risk of bleeding, but I insisted. One of those eery feelings you get that something is wrong and it probably needs to be looked in to. So, she decided to biopsy. She tried to draw blood back several times, but was unable to. At this point, I knew it was solid. A mass. At that point I knew it had returned. So the biopsy was completed, and about a day later, I got the phone call. It was Dr. Eapen. It indeed was cancer. I was booked a room the same night to begin 2nd line treatment in preparation for a Stem Cell Transplant called ESHAP-R. It was a continous 5 day infusion of chemo. I also had a new port placed prior to the chemo. After I was discharged home, I have never been so nauseated and tired in all my life. The previous chemo I had been on I had really no side effects besides hair loss and fatigue. After not even a week of being home, I began running a fever. I got readmitted to the hospital for neutropenic sepsis. I stayed in the hospital for about a week getting pumped full of antibiotics. It was never determined where my infection was, but I think it was my port site. It looked nasty.

Second round of ESHAP-R wasn't as bad as the first, but still the nausea was overwhelming. It was thankfully uneventful.

So, I had a scan this past Thursday, and thankfully, there were no signs of cancer. Im not done yet though. If I stopped here there is a 90% chance the cancer would come back without any other intervention. But with Stem Cell Transplantation Ill have a 30-60% chance of cure. Theres a wide range because everyone is different and no one persons cancer is the same. Ill be having this procedure using my own cells if possible, and if for some reason I cant produce enough stem cells to replenish my bone marrow after high dose chemo, Ill be using my sisters if she matches (25% chance of match) or a matched unrelated volunteer donor from the bone marrow registry. So sign up! I may need your bone marrow. =) All this will take place at Vanderbilt Medical Center in Nashville, and I will be in the hospital for about a month for the actual transplant. All testing, stem cell harvesting, is done on an outpatient basis, so me, my mom, Skylar, and possibly my stepmom Kathy will be piled in somewhere staying in Nashville periodically until transplant which is likely to occur sometime at the end of November, beginning of December. My insurance pays for lodging, so, hey, it may be some swanky apartment in the city. heheh

So there you have it, my life, since September of 2007. This blog is mostly to update family and friends of whats going on, and to document my experience of Stem Cell Transplant for others who might come along in my situation.

Prayers are always appreciated, as a course, Im scared silly with all of this. I was able to take Skylar trick or treating, and she was so cute. I usually just go around bald, or with a boggan on, but I wore hair that night, and she got a kick out of my hair. Anyhow, thats all I have for now.