We received some news since my last journal update. We found out that her n-myc, which for the past 11 months we were told was unamplified, is actually amplified. It doesn't change anything as far as the treatment she has had (thank goodness) because she was already considered high risk because of her unfavorable tumor histology, but it does raise a concern about Lauren's treatment being finished. Her chances of relapse has risen greatly because of the n-myc being amplified.
Deb and Bill decided that they are going to have Lauren do antibody treatments at MSKCC...same hospital Lauren had her tumor removed. The treatments are on a 2 week on/off schedule (with accutane on the off weeks) and they hope to get 4 -5 rounds before HAMA. The short explanation of these antibodies as I understand it: (thank you Alison from the N-Blast list for the explanation)
Lab mice are injected with neuroblastoma. Those mice develop antibodies against the neuroblastoma cells. The antibodies are harvested from the mice, cloned in the lab so that there is enough to work with, then
infused into the kids who need them. The kids are premedicated with GM-CSF,then immediately before infusion, they get benedryl and a strong pain killer (the actual drug depends upon the child). The kids continue to receive these drugs (not the GM-CSF) throughout the IV infusion, which lasts about 1 1/2 hours. Most children experience a lot of pain and some hives. Some have trouble with high blood pressure, which can prevent continuation of the treatment.
The pain can be very intense, but is temporary. It is caused by the fact that the antibodies are trying to find nb cells by looking for certain receptors on them. However, the receptors on regular nerve cells chemically "look" like the receptors on the nb cells. Thus the antibodies stimulate the regular nerve cells as they go about their "search and destroy nb" mission.
HAMA means "human against mouse antibody." As I understand it, achieving HAMA is like reaching a saturation point for these antibodies. The idea is to get enough antibodies into their bodies so that they can both destroy the nb cells they run across, but also "train" the immune system (hence the term, "immunotherapy") to fight nb at the cellular level of its
own accord. The neuroblastoma would not have grown into tumors but for the fact that the immune systems of these children do not recognize nb cells as
"bad guys." The MSKCC doctors prefer the kids to get at least 4 cycles of antibodies before they reach HAMA, but that is ultimately up to each child's reaction. The clinical trial allows participation for up to 2 years.
So that is where we are right now. Hearing the news was very overwhelming to all of us, but as we found out early on ....this journey is going to be a long and sometimes bumpy one. I will update again when we find out the date Lauren will begin the treatment.
As long as all the test come back ok, Lauren will start the GMCFS (Nupegen) on Wednesday the 17th and continue it until Sunday the 21st and head back to Sloan for her first infusion of antibodies on Monday the 22nd. The actual infusion doesn't take that long. 2 hours of Nupegen going through her tubes followed by 1 1/2 hours of the antibodies. Her cycle will last 2 weeks. So she will stay at Sloan M - F be home for the weekend, head back for another week then get to stay home for 3 weeks where she will get Accutane for 2 of those weeks, Nupegen for a week and start the cycle back over again. Arrangements are being made so Debbie and Lauren can stay at the Ronald McDonald House during the treatments.
Lauren is still on her TPN which they hope to stop some time next week. She is eating a bit and if they wean her off the goal is that she will be hungry enough to start eating normally again. Lauren is also complaining about headaches. Nobody wants to jump to any conclusions and I can't speak for Debbie or Bill, but on more then one occasion I have thought about the possibility of the NB already returning. I get angry that this cancer has me living in total fear most of the time. It's something that you don't get out of your head no matter how busy you make yourself with normal day to day activities. Lauren is the last thing I think of when I close my eyes at night and the first thing I think of when I open them each morning. You try not to think of numbers, everyone tells you not to, but the fear is still there because we all know the relapse rate is high. :o( We will know soon enough once all of Lauren's scans are finished....so I hold my breath and pray that it's something else causing her headaches.
Lauren continues to amaze me. To think of all the crap she has been though, I am not sure most adults would be able to mentally handle it and physically come though looking as great as she does! My mom and I spent some time with her last weekend and had a ball. We did our nails...toes and fingers, used real make-up and finished the look with some really great dress up clothes. I must say she looked stunning! She was giggling, dancing and having herself a great time!
Loves and Hugs Lauren! I will come by and visit this weekend and bring one of the dogs....hum how about Mackenzie? She would love for you to dress her up in your fancy dress up clothes!!! :o)
Monday January 15, 2001 - Just wanted to say thank you Lauren for having Grandma, Mackenzie and I at your house yesterday. We had so much fun dressing Kenzie up in all your great dress up clothes and hats! You both looked beautiful!!! Kenzie was so tired when we got home that she ate her dinner and went right to sleep for the rest of the day.
Good luck today with your CT scan. I know you will do just fine with it and my fingers and toes are crossed that all the scans come back showing nothing!
Loves and Hugs! Aunt Nean will see you and Timmy one morning this week for breakfast.
Wednesday January 24, 2001 - All of the scans Lauren had the last 2 weeks came back clear. I am not sure if the urine test is back yet though. Lauren is on day 3 of her first antibody treatment at Sloan. I spoke to Debbie last night and she said that Lauren is handling them well and the pain that she gets about half way through should diminish a bit each day. She will be able to come home Friday night and will head back in for another week beginning Monday Jan. 29th.
Her schedule is pretty straight forward. They get to the clinic at 8am and Lauren gets GMCFS through her tubes for 2 hours, then gets an hour break. 15 minutes before the infusion she gets pre-medicated with Tylenol, Benadryl and Dilaudid. Once the infusion starts she gets the pain meds again in half hour intervals and right away again when the pain hits which is has been about half way through. The only way to describe how it feels is "like your blood is on fire" Deb said they are very good at trying to make Lauren as comfortable as possible and when Debbie talks to her later on about it, she doesn't remember any of the pain.
She is eating pretty good during the morning, but not after the infusions. She spends the afternoon and evening sleeping off all that medication at the Ronald McDonald house then heads back in again the next morning.
Loves and Hugs Lauren...you'll be home soon. :o)
