Erika's Treatment Update -- Week 49

Yesterday I received my 3rd Velban treatment...finally! My white count was finally back to normal and the final skin biopsy report confirmed GVHD so my oncologist gave the okay to continue with treatment. Besides meeting with my oncologist and nurse practitioner, I was also seen by my BMT doctor. As soon as he saw me he agreed that I have acute GVHD on my skin and in my mouth. Usually this far out of transplant it's uncommon to get GVHD of any nature, but it's especially uncommon to get acute rather than chronic. Acute is most often seen within the first 100 days after transplant. Right now my treatment for the GVHD consists of 60mg of prednisone a day. Depending on my response to prednisone, I may or may not have to start on immunosuppressants. I'm supposed to call my BMT doctor on Friday with an update on how I'm doing and he will determine what to do then.

Fortunately, the prednisone has alleviated most of the itching on my skin, however my mouth is what is really bothering me now. I have blister like lesions on the sides of my tongue, the top of my tongue is white, sores on the insides of my cheeks, and my throat hurts when I swallow. Last night I was able to get down some pieces of chicken & rice, however starting today I will have to be on a liquid diet because it's too painful to eat anything with substance. I noticed that even drinking water this morning has been causing some discomfort. My doctor did prescribe some steroid and lidocaine mouthwashes to soothe some of the pain.

Now that we are once again having some beautiful weather, I've been instructed to stay out of the sun under all circumstances which I'm definitely a little bummed about. My friend from Japan went home on Sunday after a two week visit so I'm feeling a little lonely. It was nice to have some company around during the day...we had a great time chatting, cooking, shopping, and watching Sex & the City re-runs. This coming Saturday we will be going up to Sonoma State for my sister's graduation, which I'm looking forward to.

Skin Biopsy Update

I wasn't expecting to post and update so quickly regarding my skin biopsy, however I received a call from my BMT doctor this afternoon in regards to some preliminary results. The preliminary findings show that my rash is GVHD. The chances of getting GVHD this far out of transplant are pretty low, however I learned today that when you're receiving chemo you have about a 30% chance of getting it because of the fluctuations of the white blood count. The new chemo that I have been receiving has affected my counts significantly more than the last chemo so that could be what resulted in me getting GVHD.

As far as treatment goes, my doctor wanted me to start taking prednisone today and through the weekend and we will see how I respond. He's supposed to call me either tomorrow or Sunday to see how I'm doing. I'll be at Stanford on Monday for chemo. As of this evening, my rash continues to look the same and is itching like crazy. My fevers have continued to average about 102-103F.

Erika's Treatment Update -- Week 48

Today I was supposed to receive my 3rd round of the new chemo that we have been trying out. Unfortunately, as soon as my oncologist took at look at my rash it was immediately decided that I would not be having treatment. My rash has gotten much worse since I was seen on Monday. It's now all over my body including some spots on my stomach, face, and hands. My oncologist was very concerned and had the head dermatologist at Stanford take a look at me right away. The dermatologist decided that it was necessary to do a skin biopsy to do a proper diagnosis. The skin biopsies rarely conclude anything, however they can rule out some serious things so that is why they needed to do one. She feels that my rash is either GVHD (graft vs host disease), a viral infection, or a drug interaction. It's highly unlikely that it's the later two, because I haven't taken any new medications and when I had a rash a few months back they thought that was viral and it's unlikely to get two viral infections that close to each other. I'm keeping my fingers crossed that it's not GVHD however, cause that would mean I would have to start taking prednisone again as well as immunosuppressants. I was the most miserable I have ever been when I was on immunosuppressants after my second transplant. The biopsy was done on my upper arm with plenty of local anesthesia so it wasn't painful and I received all kinds of creams and oral drugs to alleviate the itching. I should hopefully get some preliminary results of the biopsy by next Monday. Until then, I probably won't be able to get chemo which I'm very disappointed about. This is now two times in a row that it has been postponed. My fevers have also gotten worse since the new rash started and tonight I had an episode of rigors followed by several hours of feeling extremely cold with chills. I'm so grateful that we had the opportunity to get away for the weekend before all these complications started.

My oncologist is supposed to contact me tomorrow to determine when we will reschedule chemo. I will update my blog as I get more news about my biopsy.

Weekend in LA

We finally got to go away for the weekend after many postponed trips to Tahoe. Chris, my friend from Japan, and I drove down to LA on Friday afternoon. We went to Disneyland on Saturday and had a great time even though it was extremely hot and crowded. We were there from about 11am until midnight, but only went on 4-5 rides because of the long waits. Sunday we met some friend's for lunch and then began our drive back. We made a quick stop at Cal Poly Pomona and Chris and I took some pictures in front of our dorm where we met many years ago.

Although we had a great weekend, it didn't go without an unforseen event. On Friday night when we arrived at the hotel I noticed some red spots on my arms and legs. I figured it was a rash similar to the one that I had a few months back and it would go away. By Sunday afternoon the rash was all over my arms, legs, and back and this morning there were also a few spots on my face and my lips were swollen about 2-3 times the normal size. I called my nurse practioner as soon as I got up and sure enough I got to take a trip to Stanford. At Stanford I got the usual blood test (everything was normal except my white count was still low) and then I was seen by my nurse practioner. She seemed to think that the rash was some type of allergic reaction and prescribed some Benadryl cream and tablets for the severe itching. I'm scheduled to go back in on Wednesday for chemo so they will take a look at the rash again and see how I'm doing.

Below is a link to some pictures from this weekend:
http://photos.yahoo.com/snoopy5210

Erika's Treatment Update -- Week 47

I went in for my 3rd round of the new chemo yesterday, however I didn't receive treatment. My white count was borderline for receiving treatment, however if I were to have gotten chemo yesterday we know for sure I wouldn't be able to get it next week. My oncologist decided it would be better to skip this week and get a higher dose next week instead. My red count also dropped significantly so they offered me either a blood tranfussion or weekly shots of Procrit to bring it back up. That is definitely one of the reasons that I've been so tired lately.

Since I didn't receive chemo as planned, we're going to go ahead and take my friend down to LA for the weekend. We're planning to visit some friends while we're down there as well as go to Disneyland. It will be nice to get away after all the times that we weren't able to go to Tahoe.

For those of you who noticed the Snoopy change on the top of the page...the other five Snoopy look-a-like's are actually Snoopy's brother's and sister...too cute!!

A good weekend

It finally seems like I had a decent weekend after having several where I didn't feel well. So far I haven't had the chemo side effects I experienced last week (mouth soreness and extreme fatigue/weakness), which could be due to the lower dose that I received this time around.

Yesterday Chris and I helped out at one of the waterstops for the TNT walk team in the morning and then went to dinner with some friends at The Slanted Door in the city. For those of you who have not been, the food is delicious and I highly recommend it (we did have to make reservations one month ahead for a weekend evening though). Tomorrow my friend from Japan arrives and she will be staying with us for the next two weeks. I'm very excited to have her visit, it's been almost a year since she was last here. We're hoping to be able to take her down to LA next weekend depending on how I'm feeling after my chemo this Wednesday.

Erika's Treatment Update -- Week 46

It's been a rough week with some unexpected side effects from my new chemo. Since my last dose last Wednesday, I've been extremely fatigued and weak. On Saturday I also started having some pain in my mouth. Whenever I ate/drank something my mouth would hurt/burn really bad. I thought I may have had some sores in my mouth like I used to get with other chemo's, but my mouth looked okay. The pain finally went away yesterday. I've also been experiencing some chest pain/discomfort since the weekend. My doctor doesn't believe that's attributed to the chemo so we're just going to keep an eye on it for now.

Today I went into Stanford to get my blood counts checked and meet with my oncologist. My white blood count was just good enough to be able to do chemo again this week. Because it was a pretty close call and my doctor doesn't want to be postponing chemo's in the near future, she decided to lower the dosage slightly so that my counts can recover and we can hopefully stay on track with doing weekly treatments. I'm scheduled to see her and my BMT doctor again next week.