Tuesday, March 27, 2012

This is a long one...relapse is complicated!!


Yesterday we met with mom’s oncologist, Dr. Cripe and his nurse, Katie. They presented the options to our family. First of all they need to get mom into remission (her leukemia needs to be undetectable). This was achieved last time, but it can be more difficult this time as her body has been exposed to chemo and may not respond the same the second time around. Also, we have to watch closely for side effects and infections since this was a serious (near deadly) episode last October.

Step One--Remission


There are two ways they can attempt this remission:


1. Standard Reinduction – where they will give her 2 chemo drugs and she will stay in the hospital 4-6 weeks waiting for her counts to recover and hopefully knocking out the leukemia. She’ll have a bone marrow biopsy to determine this after ~2 weeks. If she chooses this route, she will not be eligible for the clinical trial.


2. Clinical Trial -- where they will give her 1 or 2 chemo drugs and she will stay in the hospital 4-6 weeks waiting for her counts to recover and hopefully knocking out the leukemia. She’ll have a bone marrow biopsy to determine this after ~2 weeks. The reason for the 1 or 2 is that we won’t know if she is receiving the study drug or not. If she chooses this route, she would be eligible for standard reinduction if there was not a good response and she was healthy enough.


With either option, she will need to be in remission to move to the next step. If she does not achieve remission after the first round and she is healthy enough they can potentially go a second round. If she is not healthy enough, we’ll have to have another discussion about what our options are…we do not want to have this discussion!


Step Two—Stem Cell Transplant (aka-Bone Marrow Transplant)


The next step…When mom is determined to be in remission, she will need to have a bone marrow transplant (also called a stem cell transplant—these are not the controversial stem cells that you hear about in the news). The best case scenario for her transplant would be to find a sibling that is a match—fortunately for mom, she has four living siblings. Hopefully one of them is a match and is willing/eligible to donate cells. To determine if they are eligible, there is a simple test that they take and is sent to a lab that specializes in donor typing. If they match, they’ll run testing to make sure they are healthy enough to donate: EKG, blood work, and chest X-ray. To actually give the cells, it is not a surgical procedure, but one that requires some injections over a week’s time and a day’s worth of collection. On the day of collection, they usually show up to apheresis around 8 in the morning. They go through a consent process where they can ask any questions to one of the MD or PA over there. They will get some blood drawn and get something like an IV start in each arm. They will lie in bed while the machine runs, usually around 6 hours or so. The machine will pull blood out of one side and run it through a centrifuge to separate it. They take out the mononuclear layer and give everything else back.


If none of mom’s sibling are a match or eligible, then they would search a national database of people who have signed up to say they are willing to be a donor. If you are interested in helping, you could also sign up to be a donor—BUT you would probably not be helping mom…but you might be helping someone else’s mom, or sister, or dad, or child! Steven and I work with patients every day who rely on someone being selfless and giving their cells to a complete stranger. If you were ever chosen as a match, you would go through a similar process described above. If you would like more information about donating or to read more about what this process is, go to bethematch.org.


Regardless of the donor, the transplant is VERY SERIOUS and can have some extremely dangerous side effects, but given the other option, mom is willing to take that risk right now. When we get closer to that point, we’ll update about the restrictions, etc. that are in place for someone getting a transplant, but essentially mom’s entire immune system would be wiped out and they would restart it with her donor’s new cells.


Soooo, that’s where we are now. Mom has decided that she would like to go through the clinical trial, so she will be admitted on Monday, April 9th. She will start chemo that week and we wait and pray for the remission to occur! Mom will likely not be back to work this year because even if everything goes without a hitch, she can be immunocompromised for a year.


Thank you to everyone for your offers to help. We know we’ll need lots of prayers, but at this point we’re not sure what else we will need. Watch the blog for more updates!


Friday, March 16, 2012

No news is good news...

We've all heard that expression--and apparently it's been true for awhile.
So now, here's the news...About a month ago, Dad went in for checkup scans. There were new spots in his liver. They did the mapping procedure so they could see how they wanted to treat the tumor. They have decided since they can't see it real clear and they would have to treat the whole right lobe that it would be to dangerous. They talked about starting him on a cancer drug to control the tumor until he can get on the transplant list, but decided last Friday not to use the drug because he would have to wait for a withdrawal period to get the transplant. He is on a new medically supervised diet and it seems to be working pretty fast so they hope to have him on the list soon.
SO, in the meantime, Mom has continued to go in regularly for blood work,etc. She had an appointment yesterday and her blood work revealed that there are blasts (immature white cells) in her blood--this is an indication that her cancer has relapsed. The doctor will meet with us on March 26th to discuss all the results and options. We are all shocked of course, but will wait (probably not very patiently!) to hear what the doctor says. I'm glad that we will all be able to go with her so that we can hear everything--and so I don't try to guess what the doctor will say. Trying not to put the cart before the horse. :) Mom and Dad are both working right now and will keep doing so as long as they can.
We ask for your continued prayers and support--it worked before, no reason it can't work again!
Until then, we will keep praying for a C. U. R. E. (Complete, Unending Remission for Everyone)

~Melissa