Hey All,
I know it has been a little while since you have received and update as to my medical status. I intend to keep people updated, but when I still have unanswered questions, or things are changing quickly I hesitate until I am sure about what is going on. As you know I had surgery to remove more tumors from my spine on March 8th, followed by 7 treatments of external beam radiation, and 3 cyberknife radiation treatments to my thoracic spine. Just recently I had a PET/CT scan (basically a full body scan to check where the cancer is in my body). There were some good things on the scan, and a few concerns. It looks like the radiation helped some in my back, but I still have some other areas of concern that they are still watching. Because I still have "measurable disease" that was not within the area that received radiation, I am eligible to be in a clinical trial for a medication called Sutent. It is a medication that has been approved by the FDA for other types of cancer, but my endocrinologist at Washington Hospital Center is in charge of a clinical trial to test the medication in Advanced Thyroid Cancer. This has been a long time coming, we originally began discussing it last fall but when I had scans, they found I needed surgery, and then the same thing happened in Feb/Mar. Now three surgeries and multiple radiation treatments later I have finally completed all of the testing, and am officially started on the trial as of today. I actually had to make a rush trip to WHC today to have one last blood test that was missed and pick up the medication, because if I did not start today I would have to have a new MRI or my neck because my previous one would have "expired". So after a very hectic/stressful day I have my medication, and am hoping for the best. I have to go see my doctor every 4 weeks and have scans every 3 months or so (some scans are farther apart) to see how I am reacting to the medication. I just pray that I do not have any major side effects, and that the medicine actually works... I will be on the trial for 1 year, unless for some reason I choose to opt out (the only reason would be if I had side effects that I could not deal with). There are only about 10 people with thyroid cancer on this trial at WHC so far, they are hoping to get up to 46 participants. My doctor has told me that most people have either responded well, or at least remained stable (not better, but not worse) who are on this medication. I think that there has only been one person who has had progression of disease on the trial, but who knows if they would have had more progression without the medication (I am trying to stay as positive as possible while being a "guinea pig" ;-) ).
My doctor also wants to give me Zometa, which is an IV medication usually given every 6 months to strengthen my bones, since I have had cancer in my bones. This medication is usually used for osteoporosis. They will probably give me this in a month or two, because they do not want to start the Sutent and Zometa at the same time, because if I were to have a reaction to one of them, they would not be able to tell which medication was causing it. Lastly, since I am on such a high dose of thyroid medication, my resting heartrate is usually somewhere around 100 beats per minute, which is too fast. I have just been prescribed a beta-blocker to try and slow my heart down.They don't want to reduce my thyroid meds because my bloodwork looks good, and they are trying to supress things as much as possible with it. But, if my heart continues to beat this fast for an extended period of time, it could be damaging. They will check it again when I go back in 4 weeks to see if the medication has helped, or if I need to be on a higher dose.
I know this is alot of details, but from what most of you have told me you like to know in detail what is going on, so you can know specifically what to pray for. I want to thank all of you again for your continued thoughts and prayers as Josh and I go through this trial in our life.
On a happier note, Josh and I just celebrated our 4th wedding anniversary on May 20th, and got to go away for a wonderful weekend to celebrate, and more importantly just relax!!! I thank God every day for bringing Josh into my life to be my rock through this. As I have said before, I never knew the part of our vows "in sickness or in health" would be so important. Josh (and our families) have been by my side every step of the way, and that has really helped me deal with this. For the most part I have been able to keep a positive attitude through all of this. Like a family friend once said, we all have to empty our pitcher sometimes, and I have my moments but overall I really try to stay positive. I was speaking with a woman doing one of my tests just the other day, and she got misty eyed when I told her my story. She asked me how I was able to have such a good attitude? My thought is that no matter if I am upset, or happy I am still going to have the cancer, so I just choose to be happy as much as I can! Plus I have an amazing support system, both in the Lord and my family.
I probably could keep going all night, but I promise this is the end. I will try to keep you updated on how the clinical trial is going and about my health overall.
Thanks again for your thoughts and prayers,
Hattie
No comments:
Post a Comment