My PET scan results were not what we had hoped for. It showed extensive spreading to more lymph nodes in my neck and chest as well as spreading to my bones and liver.
Not good at all.
It is now officially Stage 4 Cancer and that really sucks.
Dr. Klimo delivered this news to us this morning. He started with, "It's not good", followed by at least 2 minutes of torture while he put the cd of my scan in his computer and brought up the images. It was very upsetting and really unbelievable but there it was for us to see on his computer screen; a picture of my body speckled with little grey and black dots. He went through each area and explained what we were looking at.
When Darren asked where we go from here he suggested a few drugs that are relatively new so not generally covered. After a brief time with him, he sent us on our way to go home and phone our extended health to see if these drugs were even an option - they are over $10,000 a month. The names are Avastin (Bevacizumab), Nexavar, and Stuent. He also said that he didn't think there was any point to doing radiation. I think what he meant was that waiting for 6 weeks for the radiation to be over was too long to wait to start the systemic treatment.
On the way home, I stopped at SMH to see if I could get Dr. Martin's opinion. She wasn't there but I spoke with the nurse coordinator who said that she would give the info (my scan results write up and the drugs Klimo was recommending) to the doctor and she would phone us later in the day. Within a couple hours, Dr. Martin had called and said that she felt radiation was still really important and gave me the names of the chemo drugs she could "offer" me. I later learned from a very good friend who is an oncology nurse, that the drugs Dr. Martin was speaking of are the standard drugs that everyone in my situation would get and that they are considered more "supportive care" than "treatment".
Darren also called our Extended Health and it turns out that they will cover Sutent and probably the other two drugs Klimo has recommended as long as we get a detailed letter.
When I got home I sent an email to Kelly, to let her know the news and ask her opinion about the Germany option. Within a couple of hours she had phoned and offered her opinion~ so unbelievably nice of her. She felt that going to Germany was a good idea. She gave me the names of the doctors that she had treatment with and also happen to work with Klimo; Dr. Rohnisch, is the oncologist and Dr. Drazinski is the naturopathic oncologist. They would work together and come up with a plan; ideally I could go there for a week or so, get all the tests done and have them come up with a plan that I could bring back here.
Darren then called Klimo's office to see if we could get in to talk more about the drugs; how quick I could start and if he considered it treatment or supportive care. The secretary said he would have to call us back and he would decide if an appointment was necessary. He called us back right away. He had talked with my radiologist who felt that I still needed radiation but they decided that I should start the chemo and other drugs asap to get a good start at systemic treatment and then we could stop them for a bit, do radiation and them continue with chemo and other drugs. I asked him what he thought about going to Germany; if he thought it was worth it. He said that the blood work can be done here and sent to Germany, which I already new. I asked if he thought it would be better to go there, get a plan and come back here for the treatment. I said that I want to be as aggressive as possible and do whatever I needed to get the best plan. I also asked if I could get started on the treatment he was recommending and then travel to Germany while taking the drugs to get the third opinion. He said yes, that would be possible and we could talk about it more at our next appointment on Monday or Tuesday.
So that's the plan for now... will update again we see Dr. Klimo.
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