It's taken me a full 24 hours to process our meeting at UCSF yesterday. Matt and I left and were both completely blown away and in awe of Dr. Rugo. I have no idea really what she said. She was hands down the smartest person both Matt and I have ever met. I wish my brother Chris was with us at the meeting... he would have known exactly what to ask, what she was saying, and been able to translate for us. We spent almost two hours with her. We have a plan, and I have a LOT more information than I had before.
We first started going over my history. Essentially she said that it's crazy (although she used a way more scientific word than "crazy") that my cancer came back. She acknowledged that I did EVERYTHING I could to beat it, and followed a very strict and harsh protocol. So she said our first step is to find out why. That's the million dollar question. I have been asking God why...but Dr. Rugo is the one who may actually be able to answer it. (Although I think God sent her to me so technically then he's still answering it, right?) They are going to do a blood test that has primarily been used for lung cancer patients. It's just now starting to be used for other cancers, specifically breast cancer. The test will hopefully give more info about my cancer and show how it changed and became resistant to the treatment. This information will help us moving forward by letting the doctors know which drugs may work and which ones absolutely won't.
She was very pleased with the progress made since my last scan in September. She said I was "very sick" over the summer which actually scared me a lot. But she was saying that my latest CBC shows all liver function back in the normal range. That's amazing to me! My poor little body has been through so much!
She agrees with continuing the Abraxane for three more cycles until the blood tests come back. If the next scan after these next three cycles shows continued success, I will be put on a hormone inhibitor based on the results of the blood test. The hope is that whatever drug I am put on will keep the tumors at bay. Once (if) they start growing again, I will go back to chemo again. I don't know what the protocol is if the next scan does not show positive results..but I don't even want to think about that.
She commented on my weight and my nutrition. I've lost 17 lbs since September. When you have stage 4 cancer, you take any bit of good news you can get. So I've been super stoked about the weight loss. She looked at me and said "Oh, so you were a little overweight when you were diagnosed?" Umm... yeah... "I used to be fat, but now I'm all that" is what I wanted to say to her, but I didn't think she'd find me funny. She was also very unimpressed when I told her I skip dinner a lot. I'm just not hungry and nothing tastes good these days. I was informed that if I want to live as long as I possibly can, I need to have good nutrition, "even if it means having ice cream for dinner." SAY WHAT?! I have the world's most intelligent woman telling me it's OK to have ice cream for dinner?! Incredible. She said it has protein and calcium and I need both. Sounds perfect...I'll stock up on mint chip and cookie dough STAT.
Where she lost Matt and I totally though was when she started rattling off clinical trials. They are made up of letters and numbers and made no sense. She said there are two drugs that have had great success with ovarian cancer that are now being rolled out to breast cancer patients within the next month. She was saying how I can't do "too much" chemo because it will eliminate me from eligibility for some trials and we want to leave me eligible for as many as possible.
Bottom line.... we have a LOT of options treatment wise. She is going to work with Dr. Adler and I will still be treated down in his office, but with her recommendations. Her recs so far follow his protocol, but with the change coming sooner if things bode well at the next scan. She already emailed him, and I am to follow up next week to get the ball rolling on the blood test.
Last night when we left I felt like my head was going to explode with all of the information. Today, I feel like my heart is going to explode with all of the hope I have.
We first started going over my history. Essentially she said that it's crazy (although she used a way more scientific word than "crazy") that my cancer came back. She acknowledged that I did EVERYTHING I could to beat it, and followed a very strict and harsh protocol. So she said our first step is to find out why. That's the million dollar question. I have been asking God why...but Dr. Rugo is the one who may actually be able to answer it. (Although I think God sent her to me so technically then he's still answering it, right?) They are going to do a blood test that has primarily been used for lung cancer patients. It's just now starting to be used for other cancers, specifically breast cancer. The test will hopefully give more info about my cancer and show how it changed and became resistant to the treatment. This information will help us moving forward by letting the doctors know which drugs may work and which ones absolutely won't.
She was very pleased with the progress made since my last scan in September. She said I was "very sick" over the summer which actually scared me a lot. But she was saying that my latest CBC shows all liver function back in the normal range. That's amazing to me! My poor little body has been through so much!
She agrees with continuing the Abraxane for three more cycles until the blood tests come back. If the next scan after these next three cycles shows continued success, I will be put on a hormone inhibitor based on the results of the blood test. The hope is that whatever drug I am put on will keep the tumors at bay. Once (if) they start growing again, I will go back to chemo again. I don't know what the protocol is if the next scan does not show positive results..but I don't even want to think about that.
She commented on my weight and my nutrition. I've lost 17 lbs since September. When you have stage 4 cancer, you take any bit of good news you can get. So I've been super stoked about the weight loss. She looked at me and said "Oh, so you were a little overweight when you were diagnosed?" Umm... yeah... "I used to be fat, but now I'm all that" is what I wanted to say to her, but I didn't think she'd find me funny. She was also very unimpressed when I told her I skip dinner a lot. I'm just not hungry and nothing tastes good these days. I was informed that if I want to live as long as I possibly can, I need to have good nutrition, "even if it means having ice cream for dinner." SAY WHAT?! I have the world's most intelligent woman telling me it's OK to have ice cream for dinner?! Incredible. She said it has protein and calcium and I need both. Sounds perfect...I'll stock up on mint chip and cookie dough STAT.
Where she lost Matt and I totally though was when she started rattling off clinical trials. They are made up of letters and numbers and made no sense. She said there are two drugs that have had great success with ovarian cancer that are now being rolled out to breast cancer patients within the next month. She was saying how I can't do "too much" chemo because it will eliminate me from eligibility for some trials and we want to leave me eligible for as many as possible.
Bottom line.... we have a LOT of options treatment wise. She is going to work with Dr. Adler and I will still be treated down in his office, but with her recommendations. Her recs so far follow his protocol, but with the change coming sooner if things bode well at the next scan. She already emailed him, and I am to follow up next week to get the ball rolling on the blood test.
Last night when we left I felt like my head was going to explode with all of the information. Today, I feel like my heart is going to explode with all of the hope I have.
Keep on fighting and NEVER give up hope, eat all the ice cream you want, sounds so positive.
ReplyDeleteThis was the BEST Thanksgiving news ever!!! You've been at the top of my prayers, and I am soooo glad and relieved that you have some positive answers! Prayers still coming strong!! Love to you, Matt and the girls!!! xoxo
ReplyDeleteWhat a great plan, so promising and encouraging! Happy Thanksgiving! xoxo
ReplyDelete
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