Tuesday, February 23, 2010

I'm glad to hear that I'm not the only one who watches curling (I can't believe I just admitted that). You turn to the olympics and you're like "oh it's just curling" and then you can't change the channel because you get hooked on this weird stone sliding sport. However, I do not understand the rules or the physics of the sweeping???

My visit to the clinic yesterday went well. I had my seventh treatment and also received an infusion of platelets. The nurse practitioner who organizes/oversees all of the clinical trials for Leukemia came by and said the drug company is really interested in me. I'm one of the only ones whose Leukemia is staying in check and not having a lot of side effects. They even requested extra blood samples from me so they could further analyze my cells to see what's different about my Leukemia than other Leukemias that have continued to multiply despite of the drug. Next week ends "cycle 2" and we'll make a decision about how to proceed with cycle 3. We thought the dose would just go up but they are also considering giving me the same dose of the drug but twice a week instead of once a week. I have no idea how to decide which of these would be better so I will probably defer to Dr. Rizzieri's judgement.

It's still a little frustrating to me that the doctors are excited that my Leukemia is somewhat "controlled" by this drug. Of course that is a good thing, but at the same time I want to think about getting rid of the cancer instead of just keeping it from growing. However, I will take what I can get.

As always, much thanks, Amy

Sunday, February 21, 2010

So we have had somewhat of a usual week here. I had a treatment on Tuesday along with infusions of red blood cells and platelets on both Tuesday and Friday. My incision site is healing well and probably will not even need to be packed much longer.

Michael and I made the trip to Matthew's basketball game at Emory and Henry on Saturday. It was nice to get out and do something normal but even something as simple as riding in the car wore me out. I feel my energy levels are decreasing with each treatment but hopefully this is just in my mind. I think I have two more treatments before the dosage of the drug will be increased. I'm optimistic that the higher dose will have more affect on the leukemia but a little worried that the little side effects I have from the current dose will become big side effects. (If any of my former English teachers read this please ignore that sentence if I misused affect/effect).

In other good news, the real estate agent found a renter for our house in Indiana. We would rather have found a buyer but at this point a renter with a 12 month lease gives us relief at the moment. The guy renting our house is the new associate dean of student affairs at Purdue so I wonder how he feels having two 25 year old grad students as his landlord.

Much thanks to all! Amy

PS - There was no illegal activity that led to my loss of internet. Just a faulty lamp, some sparks, and a blown power fuse. I don't have quite the exciting, undercover life that my South Carolina (planned) cousin does.

Monday, February 15, 2010

Good morning! I apologize for not posting but I have not had internet since Friday. Things are still going pretty much the same. I will get my sixth treatment of the trial drug on Tuesday. They will also do blood work on Tuesday and Friday to see if I need platelets or red blood cells. On saturday, the nurse showed Michael how to unpack and repack my incision so I do not have to go to clinic everyday anymore! I can't even look at the site so I'm glad there are people out there that can handle that sort of thing. My most recent bone marrow biopsy showed that the percentage of Leukemia cells was about the same as the one before, maybe a small decrease. The doctors didn't expect much of a change since the biopsies were so close in time. They are also encouraged that the drug is at least keeping such an aggressive Leukemia from growing.

Belated Happy Valentine's!

Tuesday, February 9, 2010

Hi Everyone! It's more of the same here in Durham. I had my 5th treatment today of the trial drug. In addition to that I received platelets and potassium. I surprisingly did not need red blood cells. My hemoglobin was still at a good level even though I had not been given an infusion of red blood cells since last Tuesday. I am still having to go to the clinic everyday to have the site where they removed my hickman repacked and dressed - it makes it quite sore. This will probably go on for several weeks. The surgeon thought packing it instead of stitching it up would reduce the chance of infection. Basically packing lets it heal from the inside out.

Michael got back from his Europe trip on Sunday. He had a great trip with lots of good academic and cultural experiences. I have to say the chocolate we get in the states doesn't quite compare to the Belgian chocolate he brought me :).

Everyone in VA stay safe in the snow... I know you guys are sick of it!

Friday, February 5, 2010

It's a yucky rainy day here in Durham but it's been a great day inside. This morning I had a little "mini surgery" to remove the cuff left behind from my Hickman catheter. All went well and I am not even sore. The downside is that I have to run by the clinic each day to have the dressing changed. After a nice nap Mary Beth gave me a fantastic pedicure and manicure so I was very pampered today! It was a nice break after such a hectic week. I have a treatment Tuesday and they should have some results from the bone marrow biopsy by the end of the week. There isn't much else to report at this point.

Bonsoir! (Good Evening - Since Michael is now in Belgium)

Tuesday, February 2, 2010

So we had a long clinic visit today and it is going to be a busy week. Today I received STA-9090 (the trial drug), platelets, red blood cells, and a dose of IV daptomycin (an antibiotic). They decided to start the daptomycin because the site where my hickman central line was is getting red. The hickman was taken out back in September but still hasn't healed. The "cuff" that held the line in place internally only partially came out when the hickman was pulled out so this is probably the reason for the slow healing. I am scheduled to have the rest of the cuff taken out on Friday. We will also have to go to clinic everyday to get the IV antibiotic because my student insurance does not cover home infusions. In addition to all of that I have a bone marrow biopsy on Thursday. So we have lots of medical stuff to do this week.

Today's treatment was the last treatment of the "first cycle" of the clinical trial, however the doctors have decided not to take a break between cycles since I've handled the drug very well with very few side effects. So "cycle two" will start next week. I'm glad there won't be any time in between. I want to keep beating the Leukemia down instead of giving it a break.

I also forgot to report that I had my first "hair cut" last week :). Mom just trimmed it in the back around my neck to keep it from becoming anything close to a mullet. My hair did not fall out with the round of chemo that I had in December so it has been growing steadily since about August. Mom says it looks like an actress from the old show Northern Exposure (I'm too young for that) or a news contributor on MSNBC (never watched that channel) - so I have no idea who to compare it to.

Much Thanks! Amy

P.S. - I finally figured out how to make it easier to comment on the blog, first go to the "comments" page then:

Enter your comment in the box
For "Comment as:" select name/URL
Enter your name, leave the URL blank, click continue
Click post comment
(you may have to click post comment twice)