Tuesday, March 9, 2010

Zometa, Faslodex and Avastin......Oh My!

Hi Everyone,

I’ve got another update for you. Many of you know some of this already so I will try to be brief. As you may remember, I had an MRI in January-it appeared to have “extensive bone metastasis in all of the vertebrae” but we were not sure if it was cancer or Zometa. On February 25th I had a PET and CT scan of my skull to mid thigh. We’re sure now, it’s definitely cancer.

We were fortunate to sit down with the radiologist, Dr. Bodeau, from LifeScan. Normally radiologists don’t sit with the patient to review the scans; they dictate a report and send it to your physician. But our dear friend Mary Rausch works at LifeScan and arranged for us to see Dr. Bodeau in person. He had my PET CT scan from July, which was clear except for L3 and L5, the MRI from January and the bone scan and bone survey results from December along with the recent PET CT scans.

The science part of a PET CT scan is very cool stuff. Now I know why these things cost an arm and a leg. Dr. Bodeau was very thorough in his explanation and what we were looking at. This just in, eye balls look really funny on a PET scan. On one view I was upright and spinning around, on another view we were looking at me from the top of my head and down through my body, pancreases look funny too. Then another view we were looking at me from the side, it was fascinating. I should have been a radiologist.

Here is the good news. There is no cancer in my soft tissues. Lungs, liver, spleen, adrenal glands etc. all appear normal. Those of you who gave me crap about smoking all those years, apparently I have beautiful lungs. Yes I do. You could see a faint Barcardi bat logo on my liver though. Other than that, it’s in perfect working order. I’m so pleased.

Here is the bad news. I have cancer on every bone in my body. “The skeleton demonstrates innumerable tiny sclerotic lesions throughout the visualized bones. These show intermediate to high metastatic activity which corresponds to the findings noted in the MRI scan - extensive bony metastasis.”

We focused on the spine during the meeting but I asked Dr. Bodeau if it was everywhere and he said yes. Every bone he checked looked exactly the same. Ribs, pelvis, spine, shoulders, everything.

We had a week to absorb the news from the scans before we could sit down with Dr. Bowers which was good for me because I wasn’t a mess when we met with her. She was at a breast cancer conference last week. We saw her yesterday afternoon.

So, what do we do about it all this?   In addition to the Zometa and Faslodex that I am receiving once a month, I will start a drug called Avastin. I will get this 2 times a month administered via IV. It will take about 90 minutes to infuse and has very minor side effects. High blood pressure (not worried about this, believe it or not my BP was 90 over 50 yesterday) and increased protein in the urine (hard on the kidneys).

Why? What is all of this going to do for me? Well the Zometa will keep my bones strong. I need this because as the cancer progresses it will make the bones weak. If they get weak enough they will collapse and cause paralysis. Sounds fantastic doesn’t it? My bones would be like looking at a piece of Swiss cheese. So we need the Zometa to keep doing its thing.

I receive the Faslodex to suppress the estrogen and progesterone production in my body. My type of cancer is estrogen and progesterone receptor positive so we stop the production to cut off the cancers food supply. I’ve been taking this one for 3 months now. This is the 2 minute injection in the butt I told you about. If you see me scratching myself, it’s the medication in the muscle, it makes me very itchy, but only on the left side. I don’t get it either.

And now I will add Avastin to the mix. What Avastin is designed to do is “bind to VEGF (vascular endothelial growth factor) which has been shown to be a key mediator of tumor angiogenesis”. What that means is that each tumor has its own little vascular system and the Avastin is supposed to restrict the vessels so the tumor dies off. Typically Avastin is given with chemo but since it takes 3 months to do its thing, we’re going to hold off on chemo and see if the hormone therapy and Avastin will do what chemo could do first.

Trust me on this one; I am not broken hearted to hear that we’re going to hold off on chemo. As a matter of fact, if no one ever mentions chemo to me ever again, I’ll be OK with that.

I’m sure your next question is “How are we doing?” Actually, we’re doing OK. Some days are better than others as you can imagine but in the grand scheme of things we are doing alright. The crazy thing is that I feel fine. I have some pain but it’s not unbearable. If no one told me that I had cancer I’d just think the degenerative discs in my back were getting worse and arthritis was finally setting in from the zillion car accidents I’ve been in.

I will be heading out to Aspen to ski with my Dad and Roseann this weekend and JR and I are looking forward to our trip to Italy next month with our friends Jim and Sue Edberg. I will step up my efforts to check things off from my bucket list too. I’ve got to get the real physical things crossed off sooner than later because I just don’t know how long I will feel good. I will still be training for the breast cancer 3-Day walk and The Hartford Breast Cancer Bike Ride here in Minneapolis this summer. My hope is that I will still feel good in August and be able to fully participate in these events. Dr. Bowers said the more active I am the better it will be for me.

If anyone wants to come visit us or go somewhere cool, we’re in! I’m going to spend what’s left of my life a lot like I have the first 43 years of it. Having a really good time. And for those of you who keep sending me these crazy diets and such, cut it out. As much fun as the “marijuana oil supplement” sounds, I’m not going to do it. I know it’s meant with good intentions, but this is not the time of my life to become a vegetarian or to cut out the cocktails. Send me the “eat whatever you want and drink till your heart’s content” diet please. That one sounds really great. : )

I hope this note finds you all well today. Thank you for listening to my update and for the many thoughts and prayers you send my way. I appreciate it very much. My life is better because you all are in it. Thank you for that.

Love to you all,

Jen

9 comments:

Skip said...

Jenny,

You are truly an inspiration for us all on living and loving. God Bless you. Maddy is 18 in May and she says she's ready for that sky dive (since Mom's permission isn't required). Inspiring as you are,in RDY's words, I'm still not "jumping out of a perfectly good airplane". Have a great time in Italy. Love to you and JR.

Skip

Monday Came said...

Thanks for keeping us all updated. I loved the phone call the other night - while laced with bad news - it did make me smile. Blue has a way of doing that to us, huh?

We love you. KJ and Bo

Anonymous said...

Jen and JR,

I am at a loss for words and I don't feel I should be as a survivor as well. However, what you are coping with and dealing with right now is far more then I think I could possibly even imagine. You are strong and a wonderful beautiful women, hang in there and take it "one" day at a time if you can. Our love, prayers, thoughts and comfort go out to you both.
God Bless.
Love,
Lydia and Rob

sara said...

Dear Jen and JR,

Thanks for your honest and incredibly scientific update - I need a medical dictionary beside me to keep up with you bright people!

I support you in every fun endeavor you have planned, and I look forward to the summer bike ride as well.

Being Italian, I am esp. excited that you will be venturing to that great country - that alone is excellent medicine.

Of course, our prayers continue and we send our love and support,
Sara and Pete and kids

Anonymous said...

Jen you are truly amazing. I think your positive and strong approach to life is your key. Just keep doing what you have been doing(including your cocktails) and you will be around for a long long time. Love you,Janet and Dave

Lisa Noelle Bert-Kramer said...

Hey BEAUTYFUL lady! I feel rather silly sending you my first message since Sue told me all those years ago that you had cancer. I do however ask about you everytime I talk to her and think of you everyday, as I have many people in my life that have seemed to come in contact with this !@#$ing disease. I hold dear in my heart that I was once your "little sister" and remember those times with SMILES and Laughs and OMFG's! Anyway...you ARE simply amahhhhhzing. I am proud to say I know you! And if people used to say you were "one tough cookie" back then....WOW! they should all see you now! That my, love, is an understatement!
I have 5 ridiculously awsome kids....Kalyn 14, Nico 13,Jake 9, Bella 7 and Dax 2. I am beyond blessed and who the hell'd a thunk it!?!? and married to Eddie for almost 11 years now! My Jake has special needs, he doesn't walk, talk, see (legally blind)or hear very well. still is in diapers, doesn't feed himself or chew etc.. he is in a wheelchair and goes to Western PA school for Blind Children in Oakland! He has fought for his life since day one! And ya know what? He is the HAPPIEST kid I know and the strongest person I know! If we could all just aspire to be a fraction of the person he is the world would be healed and there would be peace on earth.He IS my HERO! Through all this I've come to the conclusion...Life's a ride!....so ride it!....and ride it hard! NO-ONE on this planet is too young or too healthy for a bucket list! I say go for it n start checkin things off! I plan on it! Starting with the Bahamas next month....I'm starting small. But there's another thing I like to say...Go big or go the @#$% home! And you Jen are doing all of these things with pure JEN style and grace with that same splash of craziness thrown in that you have always had and I've always admired and looked up to!! And btw...if I were a bettin girl I'd say you n I have matching bat tattoos!TWINSIES! LOL!
What can I say but that I DO love you and have always missed you and would like nothing more than to see you and have my children get to meet you.Until then keep BLESSING all of the people in your lives with your spirit, courage and strength!
P.S. I am doing the Avon walk in DC and although I always run in memory of my mom every mother's day (Susan J Koeman Race for The Cure)even tho she didn't pass away from Cancer ...I will be walking for YOU!
P.S.S.I have just the diet you are looking for....EAT, DRINK and be MERRY!
I love you,
God Bless you and your family,
Lisa Noelle Bert-Kramer
xoxo
Mwah!:)

Lisa Noelle Bert-Kramer said...

P.P.P.S.
eddiesangel@verizon.net
lisanoelle@vzw.blackberry.net
facebook.com/lili.noelle
picturemeperfectly.com

I'd love to hear from u!:)

Anonymous said...

Hi Jen,
I have been thinking about you a lot lately and wanted to say hi. I am heartbroken over what is happening to you. When you called me to offer an ear when I got my diagnosis it meant so much to me. Thank you so much! If I can do ANYTHING for you please let me know. I know people always say that but really I mean it. Since I don't have a job right now I have plenty of time!! :) You have become like a member of our family. We all love you very much!! Call me anytime if you want to chat or need anything.
Bill Colonna
651-335-3357

Anonymous said...

Jenny,

I was thinking about you the other day and I had to find my link to your blog. Although it's sad that your cancer is back; you're living life in all the glory it's meant to be. You are a constant source of inspiration to everyone. My grandmother and aunt passed away in their 40's from breast cancer; and until I started reading your blog I had no idea what they really went through. Thank you for sharing your story.

Maybe you should add writing a book to your bucket list regarding your experience. Families suffering from any type of cancer will be inspired by your strength and belief. You are indeed a gifted writer.

Thank you again and May God continue to watch over and bless you!!