I am sorry that there has been so much happening, so I have not posted. It is difficult for me when things are so up in the air, and undecided or changing so quickly. I can't really let others know what is going on when I personally have no idea, but we finally have a plan. As you may remember, originally I was going to be having surgery today, Sept 29th but obviously that was postponed/cancelled. We went to Memorial Sloan Kettering on Friday (Mom, Josh, and I), and I was sort of hoping they would just say "you are doing the right thing, keep going", but that is not quite the answer we got. They did not disagree with our plans, but basically both the surgeon and oncologist felt it may be good to wait on surgery and look into some kind of medication, most likely through a clinical trial. We got names of doctors from University of Maryland, and Johns Hopkins and have been trying to contact both hospitals about the options for trials they might have for me. My endocrinologist in DC knows people at both places, so he was helping us look into what is out there. I will be going to meet a doctor at Johns Hopkins on Oct 22nd, but not to actually start any clinical trial, just to meet him and make the contact in case we need him in the future.
The decision we have come to is to try the medication called Nexavar, which is similar to the Sutent that I tried on the clinical trial, but I will not be part of any trial. The reason we are not going with a clinical trial right now is because most of them are in early phases, so they are being tested more for safety than for their effectiveness. Dr. B said the decision is up to us, but if it were him he would go with a medication that has more of a track record. Also, I can't get in to see any doctors about trials for a few weeks, then we would have to do scans and it may be that I would not even qualify for a trial, then 2 months would be wasted. Another benefit to not doing a trial is if my blood levels drop this time, they will be allowed to do things to help boost them, where on a trial they would be limited in what else they could give me. We are waiting on surgery for now. If have start having "symptoms" they could operate at any time but we are going to give the medication a try, and just control the pain I have been having with medication. So I guess the prayer I need is that my pain will be controlled, that I will not get as sick on this medication as I did on the Sutent, and that my insurance company will pay for the medicine. Hopefully I will tolerate this medication better. It has been a crazy, and very draining week but I feel relieved to have my radiation oncologist helping manage my pain, and to have finally come to a decision so we can move forward. Hopefully I can meet with Dr. B on Monday to get the prescription.
Sorry again that I did not keep you updated while things were so crazy. Thanks for all the prayers!!
Hattie
Wednesday, September 29, 2010
Monday, September 13, 2010
9-13-10 Update
As most people know I went to meet with some of my doctors last week, so I am a little bit late in writing an update. From the initial report about my scans, we were thinking things were pretty good, but it turned out to be a little bit more complicated than we originally thought. I met with my thoracic surgeon who compared scans from Feb, May, and August and although the reports say the tumor is about the same size, my surgeon was not really convinced that it has stopped growing, she is feeling like there may have been some changes in the tumor. It turns out that the largest tumor remaining that they sent me to the surgeon for (it is more than 5cm) is not actually in my lung, but kind of sitting right between the two lungs and if it grows could start to affect my breathing. For this reason I believe I will be having surgery, which is tentatively scheduled for 9/29.
There are several other smaller tumors that we are considering removing since they will already be operating. My doctors are still trying to work out what the best approach is, and my endocrinologist is overseas until 9/20 so even though we can consult with him via email, we are still not sure what is going to happen.
To be honest, I have been having a real hard time emotionally with this, I think because I don't really know what is going to happen. I feel like if they are going to operate I just want it done, and then want to move ahead with some sort of medication. It seems like a constant waiting game, and in my mind that just gives the cancer more time to grow. Another thing, that I know will be good but it also kind of stressful is that we are trying to get a second opinion from Memorial Sloan Kettering Cancer Center in New York. It has been in the back of my mind (and other family members) to do something like this, but after talking with our close family friend who is an oncologist in Kentucky we decided to seriously look into it. My doctors office is working on getting together all the records MSKCC has requested, and once we have sent those I should hear back about when we can get an appointment. The difficult thing is that I know I want things to move as quickly as possible, and I don't want to postpone this surgery if I don't have to, but it seems wise to get the second opinion before operating, in case these doctors have a different idea for treatment. The advantage to going to a cancer treatment hospital is that all the doctors work together from the same place, whereas I am going back and forth between hospitals and different doctors offices. We are hoping having everyone in one place will help, plus since they specialize in cancer treatment they may have options of other medications or trials that my current doctors don't.
So as you can see, there is a lot going on right now and we really need your prayers. Pray that we are able to get this second opinion as quickly as possible, for my current doctors in deciding on what they think is best, and for my emotional state which is a little shaky right now. Usually if I get emotional, it is normally for a day or two then I am able to pull it together but right now with so many unknowns, and so much happening (but yet not soon enough) I really am pretty shaken. I know that God has a plan for us, and that it is all in his hands but I am still human and am struggling right now. I thank God for my family, and especially Josh who has been my rock through this. I don't know how I would get through this without my family, because right now I am really leaning on them for support.
I will let you know if there are any more developments, or decisions made. Thanks for all your love and prayers.
Hattie
There are several other smaller tumors that we are considering removing since they will already be operating. My doctors are still trying to work out what the best approach is, and my endocrinologist is overseas until 9/20 so even though we can consult with him via email, we are still not sure what is going to happen.
To be honest, I have been having a real hard time emotionally with this, I think because I don't really know what is going to happen. I feel like if they are going to operate I just want it done, and then want to move ahead with some sort of medication. It seems like a constant waiting game, and in my mind that just gives the cancer more time to grow. Another thing, that I know will be good but it also kind of stressful is that we are trying to get a second opinion from Memorial Sloan Kettering Cancer Center in New York. It has been in the back of my mind (and other family members) to do something like this, but after talking with our close family friend who is an oncologist in Kentucky we decided to seriously look into it. My doctors office is working on getting together all the records MSKCC has requested, and once we have sent those I should hear back about when we can get an appointment. The difficult thing is that I know I want things to move as quickly as possible, and I don't want to postpone this surgery if I don't have to, but it seems wise to get the second opinion before operating, in case these doctors have a different idea for treatment. The advantage to going to a cancer treatment hospital is that all the doctors work together from the same place, whereas I am going back and forth between hospitals and different doctors offices. We are hoping having everyone in one place will help, plus since they specialize in cancer treatment they may have options of other medications or trials that my current doctors don't.
So as you can see, there is a lot going on right now and we really need your prayers. Pray that we are able to get this second opinion as quickly as possible, for my current doctors in deciding on what they think is best, and for my emotional state which is a little shaky right now. Usually if I get emotional, it is normally for a day or two then I am able to pull it together but right now with so many unknowns, and so much happening (but yet not soon enough) I really am pretty shaken. I know that God has a plan for us, and that it is all in his hands but I am still human and am struggling right now. I thank God for my family, and especially Josh who has been my rock through this. I don't know how I would get through this without my family, because right now I am really leaning on them for support.
I will let you know if there are any more developments, or decisions made. Thanks for all your love and prayers.
Hattie
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