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...