Friday, November 21, 2008

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!

Wednesday, November 12, 2008

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"!

Friday, November 7, 2008

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.

Sunday, November 2, 2008

Halloween 2008

How it all started


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.