Monday, April 28, 2014

Best Laid Plans

Don't you love how life has this way of throwing you a curve ball? Dead battery before work, sick kids on a Monday morning. I don't care who you are you had one thrown your way. I had one thrown my way this February, but it wasn't just any curve ball, it was one in the dirt, waaay outside. Almost halfway through my front line chemo I found a lump in my neck. I wanted to be sick, I wanted there to be a reason for a swollen lymph node in my neck, but I wasn't sick and I knew there was probably only one reason it was there. When Dr. Messing felt the knot he was very quiet. He is not one to speculate and it would be futile to ask him to do so. But he immediately said he wanted me to have a biopsy that day and that said it all. So I received my chemo and after went over to HEB for a biopsy. And thus on February 12th I had received what would be my last front line chemo treatment of Carboplatanin and Taxol because my biopsy came back positive for Ovarian cancer. The pathology showed only one cell type, Ovarian Clear Cell. Good news? The other cancer types present on my tumor in November seem to be stopped by the chemo. The bad news? Clear cell just laughed at the chemo. Laughed in my face. I had to wait a long weekend to get a CT scan on Monday and Doctor Messing called me about 5pm that very day. First words from his mouth were, ”It's not good.” Getting straight to the point he told me there were several other cancerous lymph nodes in my abdomen and a thickening at the base of my intestines. The chemo didn't work. I had completed nine rounds, half way done and the cancer had spread. But, wait. That made no sense. And this was the most difficult thing to wrap my head around. I was clear of cancer. My clear scan in December said so. My CA125had been 425 after my surgery in November and now it was 27.5, normal and cancer free. Right? I was just doing chemo to make sure we got every bad cell not because I had active cancer. After my diagnosis Stanley would say over and over, “You will get your chemo and when you are done they will do a scan and you will be cancer free!” That was the plan and the way it was supposed to go. Honestly this news hit me harder than my initial diagnosis. I cried, we cried. I was extremely sad and Stanley was extremely mad. Things felt sooo out of control and for those very reasons we decided at that point to keep this news to ourselves. To take the rest of our family and friends on this roller coaster ride was in our minds just cruel. We knew there would a plan at some point. Some chemo or trial I would do to try and kill this beast, but until that plan was in action we felt like we were on this terrible collision course. The very hardest thing to do was act like everything was fine. I felt terrible lying to people and telling them everything was fine and to all of those that I did, I sincerely apologize. And if I appeared standoffish it was only because lying was such a difficult thing for me to do. I was afraid the truth was written all over my face. To say those were some dark days is putting it mildly.
We met with Doctor Messing on February 19th and suggested we seek other opinions and possibly a phase 1 trial. He did not feel comfortable just pulling any drug off the shelf, mainly because the rate at which my cancer was growing was fast, scary fast. Dr. Messing said because of the “uniqueness” of my tumor he had sent it out for a Clearity Study. This company takes the tumor and makes a type of blueprint of the tumor at the molecular level and then provides a list of chemotherapy drugs which would be most affective at targeting the tumor. Individual targeted treatment is the therapy of the future and it is an exciting area of medicine!
At this point I am just going to try and give a summary of what went on the next few weeks. I don't want to write for ever and I doubt anyone is interested in every minute detail. So that Friday we met with Dr. James Strauss at Mary Crowley in Dallas. I had never heard of Mary Crowley before, but I have since found out they are well known in the area of cancer for their work in Phase One trials. Dr. Strauss did the usual check up, breath in breath out, routine and then cut to the chase. He did not think I was ready for any trial yet. He thought I should try a second line of treatment first, a three drug treatment of carboplatinum, gemzar and avastin. I did not understand why we would try carboplatinum again since I was probably platinum refractory, but I was very interested in gemzar and avastin. My cancer being platinum refractory means that it is resistance to platinum based chemotherapies. When we left Mary Crowley it was the best I had felt in a while. Although there are many people who only do trials as their treatment, for me it just feels like something you would do as a last resort. True or not that is just how I feel, so to be told I am not ready for trials made me feel so much more NORMAL.
On Sunday we headed to Houston to meet with MD Anderson the next morning. We met with Dr. Stood and he also made suggestions for second line treatment. He suggested topotecan and avasitin. There was that avastin again. Avastin is not a true chemotherapy in that it does not affect the cancer cells, instead it inhibits the growth of new blood vessels that the cancer would use to grow. I had been interested in avastin before this because my original tumor was very vascular and had used my own blood cells to to basically build its own blood system. That is why I had to receive two units of blood during my initial hysterectomy when the tumor was removed. That day we also met with the clinical trials department. They would take my case and present it to their board on Thursday and see what trials would best suit me. But, at this point I already knew what I was leaning towards. Any clinical trial presented would have to wow me. I just felt the chemo drugs being suggested to me for second line had more hope than the unknown.
 
I did not know what MD Anderson would suggest for a trial, but I knew that if I was to do second line treatment then I needed to get things going. So we met with Dr. Messing that week. He had also met with his medical group and they had their own suggestions. In the end it was decided that I would do a second line treatment of three drugs: doxil, gemzar and avastin. I would go to MD Anderson that next Monday to discuss their suggestions for the clinical trials. If I declined the trial then I would start my new chemo on that next Tuesday. Dr. Messing warned me that this three drug regimen was not one he would normally do and that it could be very toxic, especially to my bone marrow. But, hopefully toxic to my cancer as well! We made our trip the next week to MD Anderson, but we did not feel the trial they offered could do for me what this three drug approach could. So the next Tuesday, March 4th, I went back to start my new chemotherapy. I had to see Dr. Messing that Tuesday before I could get my chemo, yet he was in a meeting. As I sat in the little room waiting on him, his nurse Lynn came in and told me she thought my Clearity study had come in the mail. A few minutes later she brought me the results and there on the first page it read, Agents with Potential Benefit:


topotecan(suggested by MD Anderson),

gemcitobine or gemzar(suggested by Mary Crowley and Dr. Messing)
and

doxorubicin or doxil(suggested by Dr. Messing).

 
I felt goose bumps on the back of my neck and a chill go down my arms. OMG! All the drugs they had been suggested over the last weeks were a match for my tumor. This cemented everything. I knew for sure we were doing the right thing! And 20 minutes later I got my first dose. :)

The best-laid plans of mice and men
Often go awry
And leave us not but grief and pain
For promised Joy

3 comments:

  1. Goose bump moment for sure!!! It's at moments like that, when you sincerely feel like God is winking at you...reminding you that He's got you in His hands. Thank you for the update. You are one tough cookie!!! Keep strong and you & your family continue to be in our prayers. ((Hugs))

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  2. I have been told that God's timing is perfect and this to me is a small example of that. He is looking over you and loves you more than I do so know he must want only the best for you. We just don't always understand and I sure don't. Gary said to tell you that you are still pretty even if you are bald. I say amen to that. Love you, Mom

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  3. "...I doubt anyone is interested in every minute detail." I am!!
    "I was just doing chemo to make sure we got every bad cell not because I had active cancer." Same as my thoughts.
    We have been so, sort of, neck and neck through this (I was even at MD Anderson on February 19 for my mid-chemo scans!), and we're both clear cell. AND I feel like I now have something swollen at the base of my neck but don't know if it's my thyroid or not. Aye-yie-yie!! I go back to Houston in 1-1/2 weeks to see Dr. Gershenson. I'm just going to hope for the best....for you and for me!!

    Please keep up updated on how the new chemo regimen affects you. How many treatments? Weekly like frontline was? When will your next scan be?

    Hugs to you, Patricia. You are in my thoughts and prayers!

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