Recently Diagnosed with Stage IV NSCLC

Glenna M said:

Many others...
I know how scared you and your wife must be right now. Any cancer diagnosis automatically sounds like a death sentence but it is NOT. There are others on here who have had lung cancer with brain mets and are still here helping others on this forum. Stayingcalm is one of them and I believe her original diagnosis was 5 years ago and she is still going strong. I'm sure she will respond to your post as soon as she sees it. She is a wealth of knowledge about treatment and a lot of the different chemo drugs.

Unfortunately right now we have been spammed again so it may take a little longer before you see many replies. It's sad that there are so many sick people out there who would do this on a site that many of us rely on.

Please post again to let us know how you and your wife are doing and what the doctors recommend for a treatment plan. We are all here to help you both through all of this.

Stay strong,
Glenna

ViewSonic said:

Scan Results
Well, we went to see the oncologist yesterday and was able to spend 2 hours with him asking questions. This was probably the most time we have ever spent with a doctor where he didn't try to rush us. He took his time and answered all our questions. The cancer has spread to several of her lymph nodes, and to various bones of her body; her left shoulder, right thigh, and spine. The MRI shows several small spots on her brain. It was very difficult for my wife to take in all the bad news of her scans.

The onc suggested WBR 10 - 15 treatments for the next 2 - 3 weeks. After that, a chemo combination of Carboplatin, Alimta, and Avastin. He's also testing her for the ALK gene mutation and seeing if she qualifies for the Crizotinib clinical trial. The clinical trial looks promising from what I've read on the internet. Has anyone been on this chemo regimen, and what can we expect from it?

ViewSonic said:

An Update
An update, my wife visited Emory Winship Cancer Institute in Atlanta to obtain a 2nd opinion. Oncs gave her the same diagnosis, however stated that she tested positive for the ALK mutation, and can enroll in the Crizotinib trials. However, she must go thru at least 2 - 3 cycles of Carboplatin / Taxol, before beginning the trials and even then there's no guarantee that she will be put on Crizotinib.

During this time from when she was first diagnosed, she has been doing a lot of research on herbals and alternate medicine to battle cancer. She has been so caught up in it that she's currently deciding to forgo the conventional treatments of chemo for an alternative method. She states she's going to go through with the radiation to the head, but will only do alternate treatments afterwards. Now she's totally against chemo for some reason. And no matter how I try to persuade her and talk to her, she goes on the defensive and we get into a argument. She's says I'm not being supportive, and she has stopped talking to me about the whole situation altogether. I am so frustated and hurt that she's refusing to go thru with the chemo. The doctors are saying chemo will help, and if it doesn't work; then the clinical trial of Crizotinib would definately help fight the cancer. I am a lost at what to do, I've tried talking to some of her close friends to see if they can persuade her to go thru the treatment, however they are not getting through to her as well.

While ultimately its her decision, I still wish she would consider chemo. What should I do? I don't want to see my wife lose her life because of her stubbornness.

ViewSonic said:

Scan Results
Well, we went to see the oncologist yesterday and was able to spend 2 hours with him asking questions. This was probably the most time we have ever spent with a doctor where he didn't try to rush us. He took his time and answered all our questions. The cancer has spread to several of her lymph nodes, and to various bones of her body; her left shoulder, right thigh, and spine. The MRI shows several small spots on her brain. It was very difficult for my wife to take in all the bad news of her scans.

The onc suggested WBR 10 - 15 treatments for the next 2 - 3 weeks. After that, a chemo combination of Carboplatin, Alimta, and Avastin. He's also testing her for the ALK gene mutation and seeing if she qualifies for the Crizotinib clinical trial. The clinical trial looks promising from what I've read on the internet. Has anyone been on this chemo regimen, and what can we expect from it?

ViewSonic said:

Thanks
Thanks everyone for your input and stories. I will try to stay positive, and will continue to persuade my wife on accepting chemo treatments. I pray that she will eventually come around and go thru with the treatments. I will keep everyone posted on the updates and how she is responding to WBR.

ViewSonic said:

An Update
An update, my wife visited Emory Winship Cancer Institute in Atlanta to obtain a 2nd opinion. Oncs gave her the same diagnosis, however stated that she tested positive for the ALK mutation, and can enroll in the Crizotinib trials. However, she must go thru at least 2 - 3 cycles of Carboplatin / Taxol, before beginning the trials and even then there's no guarantee that she will be put on Crizotinib.

During this time from when she was first diagnosed, she has been doing a lot of research on herbals and alternate medicine to battle cancer. She has been so caught up in it that she's currently deciding to forgo the conventional treatments of chemo for an alternative method. She states she's going to go through with the radiation to the head, but will only do alternate treatments afterwards. Now she's totally against chemo for some reason. And no matter how I try to persuade her and talk to her, she goes on the defensive and we get into a argument. She's says I'm not being supportive, and she has stopped talking to me about the whole situation altogether. I am so frustated and hurt that she's refusing to go thru with the chemo. The doctors are saying chemo will help, and if it doesn't work; then the clinical trial of Crizotinib would definately help fight the cancer. I am a lost at what to do, I've tried talking to some of her close friends to see if they can persuade her to go thru the treatment, however they are not getting through to her as well.

While ultimately its her decision, I still wish she would consider chemo. What should I do? I don't want to see my wife lose her life because of her stubbornness.

ViewSonic said:

Update: A Turn for the Worse
My wife did the WBR, and recovered fine from that. MRI and head scans shows everything is in the clear. We celebrated from the results of the scans, and she was feeling great. She finished rad in mid January, and her onc enrolled her in a clinical trial for Crizotinib. She was doing ok except for some mild pains. However, everything took a turn for the worse a week ago.

It happened so fast, one day she was doing fine, the next day I had to take her to ER. On 3/11/2011 - Friday, she was suppose to start on a combination of chemo of Carboplatiin/Alimta; she had been radomized to the chemo arm of a clinical trial. We were hoping for the study drug Crizotinib, but it wasn't meant to be. She had finally agreed to go through with the chemo, however they didn't give her the chemo that day due to her failing her Echo/EKG? test; they said her heart rate was too fast which was around 120 bpm. Since they didn't give her chemo, they went ahead and gave her an infusion of Zometa. Everything was fine until later that evening when she complained of severe pain in her right hip and right shoulder (bone mets). I called the on-call nurse, and she stated that the Zometa may have irritated the bone mets and that a lot of patients experience some mild pain after that treatment. However, the pain she was experiencing was far from mild. She took Morphine, and several hours later Dilaudid (pain meds), and nothing work so I took her to ER to get her some relief. At first, she was being treated for the pain, and it seems like everything would be fine, and she'll be back home in a couple of days however that was not the case.

They did x-rays & CT scans. They transfer her to ICU as a precaution. Docs are saying she has fluid in her lungs and around her heart. They have already done a procedure to drain some of the fluid out, however her condition still has not improved. She has difficulty breathing and is currently on oxygen, and may be put on a ventilator soon. The team of doctors are not giving her much hope. I am at a lost for words and have been trying to come to terms on everything that is going on. It pains me to see her in the condition she's in. She is on constant pain medication and sleeps for most of the day, and is not aware of anything that is going on. Docs are planning to do radiation to her lung and chemo to see if they can reduce the size of the tumor in her lung. I'm just praying and hoping she pulls thru; however the docs are saying to not expect much. I took my kids to see her this past Saturday, and she smiled when she saw them; however since then, she's slipped back to her current state. I'm trying to stay positive, but it is difficult to do so.

ViewSonic said:

Update: A Turn for the Worse
My wife did the WBR, and recovered fine from that. MRI and head scans shows everything is in the clear. We celebrated from the results of the scans, and she was feeling great. She finished rad in mid January, and her onc enrolled her in a clinical trial for Crizotinib. She was doing ok except for some mild pains. However, everything took a turn for the worse a week ago.

It happened so fast, one day she was doing fine, the next day I had to take her to ER. On 3/11/2011 - Friday, she was suppose to start on a combination of chemo of Carboplatiin/Alimta; she had been radomized to the chemo arm of a clinical trial. We were hoping for the study drug Crizotinib, but it wasn't meant to be. She had finally agreed to go through with the chemo, however they didn't give her the chemo that day due to her failing her Echo/EKG? test; they said her heart rate was too fast which was around 120 bpm. Since they didn't give her chemo, they went ahead and gave her an infusion of Zometa. Everything was fine until later that evening when she complained of severe pain in her right hip and right shoulder (bone mets). I called the on-call nurse, and she stated that the Zometa may have irritated the bone mets and that a lot of patients experience some mild pain after that treatment. However, the pain she was experiencing was far from mild. She took Morphine, and several hours later Dilaudid (pain meds), and nothing work so I took her to ER to get her some relief. At first, she was being treated for the pain, and it seems like everything would be fine, and she'll be back home in a couple of days however that was not the case.

They did x-rays & CT scans. They transfer her to ICU as a precaution. Docs are saying she has fluid in her lungs and around her heart. They have already done a procedure to drain some of the fluid out, however her condition still has not improved. She has difficulty breathing and is currently on oxygen, and may be put on a ventilator soon. The team of doctors are not giving her much hope. I am at a lost for words and have been trying to come to terms on everything that is going on. It pains me to see her in the condition she's in. She is on constant pain medication and sleeps for most of the day, and is not aware of anything that is going on. Docs are planning to do radiation to her lung and chemo to see if they can reduce the size of the tumor in her lung. I'm just praying and hoping she pulls thru; however the docs are saying to not expect much. I took my kids to see her this past Saturday, and she smiled when she saw them; however since then, she's slipped back to her current state. I'm trying to stay positive, but it is difficult to do so.