Major regression for the first time in over a year!
 

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.

Re: Major regression for the first time in over a year!
 

What a wonderful example of my mantra Keep the Faith! And what a great team you have in your corner. I am so happy for you and this early Christmas present you have been given. Thanks for sharing it

Re: Major regression for the first time in over a year!
 

That s simply fantastic - very well done to you and your team for such tenacity and faith I am very happy for you!
Jenny

Re: Major regression for the first time in over a year!
 

Wow! I am sooooo happy this miracle happened. But is it a miracle? You have a group of first class doctors caring for you and not giving up. They didn't give up because YOU didn't give up. What a Lady!
Thank you for sharing what you did. It may open doors for others. And the Avastin part!!!! This is very important.
Hug your babies tight and focus on the mets shrinking!
Michka

PS: why were you misdiagnosed during 3 months?

Re: Major regression for the first time in over a year!
 

I'm doing a happy dance for you and your sweet babies, Deena. Hooray, hooray for you!!!!!!!!! I'm so glad this combination has turned things around. We have a friend of our family who has battled breast cancer for 15 years. She has been near death multiple times and her medical team also responded by thinking outside the box. She was playing golf last week. :)

Rooting for ya,

Paula

Re: Major regression for the first time in over a year!
 

I love hearing of determination like yours and your team paying off!
May it continue for a long time.
Paula O I love to hear of your friend too - gives me reason to continue to hope.
go Deena!

Re: Major regression for the first time in over a year!
 

How wonderful for you and your family! Gods blessings are all around you. Please know that you and your beautiful family are in my prayers.

Re: Major regression for the first time in over a year!
 

Deena!
That is AWESOME...in the truest sense of the word! I'm sitting here, literally in awe of your faith and determination!

Sooooooo happy for you AND your babies! I hope you continue to regress...and that you have a magical holiday season together!
Thanks so much for this inspirational post!'
Denise

Re: Major regression for the first time in over a year!
 

I am soooooooooo happy to hear of your turn of luck Deena Go Go Go Deena. I like happy stories, it gives us all hope thanks for sharing.

Re: Major regression for the first time in over a year!
 

Thanks for posting this GREAT news Deena, we sure could use some on the board these days!!

Hugs those babies with all your might sweetie.

all the best
caya

Re: Major regression for the first time in over a year!
 

I've been wondering about you, Deena. So glad you shared your great news! Thank God for Christmas miracles!

Re: Major regression for the first time in over a year!
 

Deena,

You have been blessed by an amazing medical team! I am so happy for your incredible turnaround. You are a fighter and you have Drs. that fight for you, and that is a great combination. I'm thanking God that you are doing so much better. Thanks for inspiring us all.

Re: Major regression for the first time in over a year!
 

Wow. I am very happy for you! Happy Holidays for you!

Re: Major regression for the first time in over a year!
 

Deena, what an amazing post. I'm very happy for you, and once again, I've learned something from a post on this wonderful forum. Wishing you continued regression and continuing good health.
Cheers Marie

Re: Major regression for the first time in over a year!
 

Deena, thank you for the info. It's so great to know about possibilities, and I am so glad you're progressing so well!! May it keep going until it's gone!!

Rachael

Re: Major regression for the first time in over a year!
 

How wonderful! Thanks for sharing. So glad your perseverance paid off. This holiday season is going to be very, very special for you and all of us!

Re: Major regression for the first time in over a year!
 

Deena, that is fantastic news! And so nice to be able to do it with a mostly targeted approach.

Just curious, Who is your integrative MD? Wonderful that he was so committed and creative on your behalf, and that the rest of your team was on board as well. You have a great team - it's so hard sometimes to get them all "playing" together. Well done.

Re: Major regression for the first time in over a year!
 

wow this is great and how lucky you and your doctors fought for it and used it.
So happy for you and your family.
hugs and love
health and happiness
sarah

Re: Major regression for the first time in over a year!
 

You have made my day! Can't tell you how pleased I am to hear this fantastic news. We all need to carry on praying for miracles.
Hugs
Ellie