Rejoice always; pray without ceasing; in everything give thanks; for this is God's will for you in Christ Jesus. I Thess. 5:16-18

Wednesday, February 1, 2012

sorry for the delay

Since it's been such a long long time that I posted a blog entry, this one is going to be lengthy. Sorry!

The last time I did an update that was not on facebook, I was taking a combo of Carboplatin and Taxotere and my cancer was shrinking. I had a ct on October 18 that showed no growth in my lungs, but the next day I noticed a painful spot under my right arm. I continued on the chemo and we just watched the lymph node hoping it would shrink. It did not. A biopsy around Thanksgiving confirmed a recurrence of cancer in the node therefore a change of chemo was required.

During this time I had also been very sick with an upper respiratory infection that morphed into a sinus infection headaches causing so severe I decided the cancer had moved to my brain and I was going to die. I did not. An MRI was clear (notice I did not say normal) and 3 rounds of antibiotics later I was feeling much better and we started the Havalen. The weekend after my first dose was AWFUL; so awful we thought I was not going to be able to stay on it. I asked for specfic prayer requests and the side effects became tolerable. It seemed to be working on the disease in my lungs, but the tumor in my lymph node continued to grow and became increasingly painful. A ct on January 10 confirmed my fears and we are on to a new drug.

Gemzar. The Gemzar hit my counts pretty hard and the fatigue has had me in bed most days. The pain has also become excruciating, leaving me sometimes counting the minutes until I can take my next pill. On a side note, ibuprofen gets rid of the pain, but I am not allowed to take it because it thins my blood. On a stupid note, when I called for a refill and to complain about the pain, Kim at The Cancer Center, asked if two pills worked and, while I did admit to taking two at a time, I told her I don't like to do that because the prescription is for one. It isn't. I do so wish I could read.

When we found out the Havalen was not working as well as Dr. Gualtieri had hoped, his nurses started the process of getting me an appointment at The Sarah Cannon Research Institute in Nashville, TN. Apparently there are quite a few new oncology drugs that have been developed there and he had high hopes that I can get into a clinical trial that will kill my cancer without killing me. I met with Dr. Infante on Tuesday, January 31, which brings us to today.

Dr. Infante has stopped the Gemzar and is ordering another ct to see whether or not it is working. If it is not, I have one option now and two other possibilities. Since I have triple negative (progesterone negative, estrogen negative, and Her-2 negative) breast cancer, my treatment options have been, and are, quite limited. Dr. Infante says one of the tests used for my Her-2 status uses a scale of 0-3 with 0 being absolutely negative and 3 being absolutely positive. My tumor was a 2+ which they consider borderline and means I am eligible for a Phase I study of the drug MGAH22. He is very hopeful that my cancer will respond to its first targeted therapy. The study will involve a first visit lasting one week and then weekly treatments thereafter. I will be evaluated at 50 days and if the cancer responds, I can stay on the drug as long as it works.

Other two studies involve testing of my tumor to look for specific properties in order to be eligible. One is a Phase I/II study of GSK2636771 of patients with tumors that have PTEN deficiency. The only thing I really understand is that some sort of protein is missing and the drug does something with that. I am asking that those of you who pray, pray that my tumor is PTEN deficient and that I will qualify for this study also. The other study we are looking at is a Phase I study of BGJ398 a pan FGF-R kinase inhibitor and I have no idea what that means. I just know if the other two don't work, I want this one, so please pray that I am eligible for it also!

So, here we are, oh so hopeful, a little afraid, and a little excited. I pray for a cure every day, but I'll settle for a manageable, chronic illness. Thanks to all of you who have joined me and my family on this journey. I will do my best to update more often and at the same time try to be more amusing and interesting :)

Much love....

1 comment: