DeenaH
11-30-2012, 11:44 PM
It really is a miracle that this happened. I have a team of doctors (3 oncologists, 2 cardiologists, a pulmonologist and an integrative MD), and several of them really thought I was dying about 2 1/2 months ago. Tiny pieces of my cancer were breaking off and causing pulmonary emboli. I was on oxygen 24/7, and so dehydrated that I went stretches of time where I could barely remember anything that happened. When going to the doctor, I had to be wheeled into the office in a wheelchair and then had to lay down. I couldn't even sit up for long because of my breathing. We knew things were dire, but it wasn't until I came out of it that I knew how bad it was. I had
Lymphangetic spread throughout my lungs. My integrative doctor spent hours researching this for me, and found out that most cases of this are misdiagnosed (as mine was for 3 months), and is usually not discovered in time to reverse it. He also found that most cases of lymphangetic spread involve angiogenisis. in June 2011, I had chemosensitivity testing done and my cancer tested sensitive to sutant (an anti-angiogenisis drug). With this 2 piece of information, he strongly suggested that I start campaigning to get Avastin added to my treatment. My UCSF doctor agreed that that was a good treatment choice, but it would be nearly impossible to get approval for Avastin in my case. My private oncologist (not with an institution) also agreed when I brought it up at my next treatment. He gave it to me that day because he didn't think I would make it another week. I have been getting better and better (aside from some infections and some side effects), and I just had my first scan since being on Avastin. My tumors have all gotten smaller by 30-50%!!! The other doctors on my team are floored. The regime I am on is novel, but it is working! We had an idea that I may have the right genetic makeup for Avastin (VEGF+) because of the sensitivity to Sutant, but it was a jump of faith.
I didn't want to share unless I had good results because I know how hard it can be to get Avastin. But, it is worth fighting for if you think you might be VEGF+. The combo I am on is Herceotin/Avastin/Abraxane/Tykerb. I have to stop the Tykerb here and there if I have diarrhea because I get severely dehydrated, then the fluids cause pulmonary edema. But most of the time 2 pills a day is fine.
The holidays are going to be extra special this year! I'm hugging my babies tight and planning to be here a bit longer for them.
Lymphangetic spread throughout my lungs. My integrative doctor spent hours researching this for me, and found out that most cases of this are misdiagnosed (as mine was for 3 months), and is usually not discovered in time to reverse it. He also found that most cases of lymphangetic spread involve angiogenisis. in June 2011, I had chemosensitivity testing done and my cancer tested sensitive to sutant (an anti-angiogenisis drug). With this 2 piece of information, he strongly suggested that I start campaigning to get Avastin added to my treatment. My UCSF doctor agreed that that was a good treatment choice, but it would be nearly impossible to get approval for Avastin in my case. My private oncologist (not with an institution) also agreed when I brought it up at my next treatment. He gave it to me that day because he didn't think I would make it another week. I have been getting better and better (aside from some infections and some side effects), and I just had my first scan since being on Avastin. My tumors have all gotten smaller by 30-50%!!! The other doctors on my team are floored. The regime I am on is novel, but it is working! We had an idea that I may have the right genetic makeup for Avastin (VEGF+) because of the sensitivity to Sutant, but it was a jump of faith.
I didn't want to share unless I had good results because I know how hard it can be to get Avastin. But, it is worth fighting for if you think you might be VEGF+. The combo I am on is Herceotin/Avastin/Abraxane/Tykerb. I have to stop the Tykerb here and there if I have diarrhea because I get severely dehydrated, then the fluids cause pulmonary edema. But most of the time 2 pills a day is fine.
The holidays are going to be extra special this year! I'm hugging my babies tight and planning to be here a bit longer for them.