Visit to Vandy

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

My sweet baby Skylar on Christmas!

Test Fest

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!

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

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...

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!

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

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

How it all started

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.