Erika's Treament Update -- Week 19

Hi everyone.

Well I've had a pretty eventful week since I last wrote. I spent last Tuesday-Friday at the hospital again due to high fevers. As usual, I had some tests done to try and find a source for the fevers, however everything came back negative. I was on IV antibiotics every 8 hours and finally on Thursday the fevers dissapeared and I was able to go home for the weekend. Due to the unexpected fevers and my counts dropping a lot lower than expected my chemo was delayed and I wasn't able to receive my second dose until this week. Because the combination of the two drugs that I received caused my counts to drop more than expected, my oncologist has decided to continue with only one of the drugs for now. I will be getting the drug every other week. I got a dose on Wednesday and have so far tolerated it very well. I have been a little more fatigued than usual, but that is of course expected. Fortunately of the two drugs, this is not the one that causes the terrible bone pain, so I'm very relieved about that!

Congratulations to all of you Nike marathon finishers!! I heard it was a fun event and the weather turned out to be perfect. Again, I wish I could have been there in person, but definitely all were in my thoughts!

I finally received the Livestrong wristbands if any of you are still interested. They got my order wrong and sent me plenty of youth size and not enough adult size (although they're sending me more), but eventually I'll have plenty of both.

Thank you to all who have been sending me emails (still working on replying) and have wrote comments on this blog. Everyone's words have been very touching and thoughtful.

Hope you all have a great Halloween weekend!

Erika's Treatment Update -- Week 18

Hi everyone.

My apologies for the long delay between updates. A lot has happened in the last two weeks and unfortunately it's not good news. In fact, what I have learned in the past few weeks has been very difficult to cope with and to share with others...

I actually have not had another bone marrow biopsy as many of you anticipated, which is why I haven't posted any results in regards to my donor's chimerism. The day that I was supposed to have my bone marrow biopsy done, I learned that a CT scan that I had done the previous week showed that my tumor had grown again significantly and had also spread to my lungs. This means that the transplant is not working. Although I have plenty of donor cells (more than the doctor's expected), they're just not fighting my disease fast enough or possibly at all. In fact, my disease is so advanced that it would be unlikely that they could fight before the disease would take over. As you can imagine the news was devastating. My BMT doctor said there was nothing else that could be done except taking me off all immunosuppresants in hopes that it would activate the donor cells even more, however the chances of this working are very unlikely and the chances of getting Graft vs Host Disease which could impact my quality of life are high. By Tuesday I will be completely off all immunosuppresants. I have also met with a lymphoma oncologist expert at Stanford (which I'm now under the care of) and together we have decided to procede with more chemo. I started my first treatment last Wednesday of two drugs that I've never had before. One is used for lymphoma, however the other is used for breast & lung cancer and is very experimental in lymphoma. The hope is to keep my disease from spreading as rapidly to give me some more time and if we could get any kind of shrinkage it would be great. We are also looking into some other options, such as clinical trials, however we first have to get the disease under control so that I can be eligible for such trials. The chemo is also being used to relieve some of my symptoms such as the daily fevers. In terms of the side effects, I tolerated the first dose pretty well the first few days, however over the weekend I experienced extreme bone pain, which made me unable to get out of bed. Today, I'm doing much better and from what I understand the side effects lessen as you get more doses. I will be going back in this Wednesday for a second dose of one of the drugs and next week they will do a chest x-ray to see how I'm responding.

Chris' work has been more than understanding and cooperative and are letting him take as much time as he needs off from work and letting him work from home so he's able to be with me the majority of the time. We're just taking one day at a time and trying to cope as best as possible. At the moment, I'm really not up for visitors or meeting people, I hope you understand. I still look forward to receiving emails however and although slow, I have been responding, so please feel free to email me if you would like.

Due to the events of the last few weeks, I'm sorry to say that Chris and I won't be able to attend the Nike marathon this coming weekend, but to all the TNT participants you will definitely be in my thoughts that day! I will be thinking of each and everyone of you out there and wishing so much I could be there to cheer you on. I know you will all do great, GO TEAM!

I wish I had better news to give all of you. What I can tell you is that I won't give up and will continue fighting...

Erika's Treament Update -- Week 16

Hi.

It was great seeing a lot of you at Light the Night last Saturday, Chris and I had a great time even though we weren't able to parcipate in the walk itself. Chris and a few of my other friends even joined the bone marrow registry, which made the evening that much better.

I had my usual Mon., Wed., and Fri., visits at Stanford this week. I had tapered off prednisone last Sunday and started to feel not so well on Monday, so I'm back on a low dosage until further notice. As much as I hate taking it, it controls my fevers and makes me feel a little better. My "suspicious" rash is almost gone, just have a couple of spots left on my chest/neck area. Today is my last day on one of my immunosupressants (yeah) and next week I should start tapering Cyclosporine. I'm looking forward to that since it will keep my blood pressure from getting higher and keep my electrolytes from depleting so much (can't wait to have food that's not overly salted or high in sodium).

For those of you that had asked me about the Livestrong wristbands, I still have not received them so please don't think I've forgotten about you. As soon as I get them I'll let you know.

Have a good week!