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

Already Missing 2009 - Bad Scan and MRI

Hi Everyone,

Here we go again. The cancer is back. Apparently with a vengeance. On Wednesday December 30th I went in for a bone survey and bone scan for the clinical trial I’m participating in. I had no reason to think that it would not turn out well because everything was fine in December, but as life is so apt to kick one in the ass when you’re not looking, this was not to be that time.

On Monday January 4 I was called with the news that there were some spots that showed up on my bone scan. In the past, bone scans have not shown much for me for some odd reason so three spots appearing was not good news. The scan showed lesions in T11, a spot in my clavicle / sternum area and our personal favorite, the right side of my skull a couple inches above my ear. On Tuesday when I went in for Zometa, we saw Dr. Bowers. The plan at that time was to keep me on the clinical trial and switch my hormone medication from Aromasin to Faslodex. What’s the difference? Well one is a pill, one is a monthly shot, and the biggest difference is the Faslodex is a more aggressive way to shut down the estrogen and progesterone production in my body, which feeds my cancer. By the way, the shot is in the butt and is a 2 minute injection. Fun.

I wouldn’t have been so worried about the scan results since Zometa  has been known to look like lesions while it’s healing bone. However, when I got the CA 27.29 tumor marker test results back, that changed. Last month they were in the normal ranges of 0 -35, I was a 25, and here we are 30 days later and I’m back up to a 58. So now I’m worried. On Friday January 8 I had an MRI of the cervical and thoracic vertebrae and the news was much worse than the bone scan had indicated. The results read like this:

Findings: All of the thoracic vertebral bodies demonstrate a mottled appearance. On the scout view, the cervical vertebrae also appear to be diffusely infiltrated. There appears to be diffuse infiltration of the bone marrow. This is consistent with extensive bone metastasis. This is much more extensive than what is apparent on the bone scan. No epidural tumor is identified. No cord compression is seen, the spinal cord appears normal. The central canal is normal.

Impressions: Extensive bone metastasis.  All of the vertebrae in the cervical and thoracic spines have a mottled appearance.  The pattern is consistent with extensive metastatic disease.  The bone scan underestimated the extent of disease.

So what does this mean? Well it means despite many possible variables, things aren’t looking very good. There is still a lot we don’t know. Could some of this be from Zometa activity? Yes it could. That would be a very good thing. Can the doctors tell which is which? Not at this point. We asked about a CT / PET scan and about another bone biopsy and we’re not going to do either one of those at this time. The reason they are not going to do the biopsy is that there is so much "metastatic" activity, which one would they choose? And there is a chance they could choose a spot that is Zometa related and not cancer. They know I have a new cancer occurrence, the tumor markers tell them that, so there is no reason to do a biopsy.

So what are they going to do? Well I’m coming off the trial so they can make sure I am getting Zometa every month, and keeping me on the Faslodex. In 3 months they will scan me again. In the meantime, they have a plethora of scans (bone scans, bone surveys, CT/ PETs and MRI’S) from the last 6 months to look at and compare and hopefully get more information for us.

The good news here, if you can say there is any good news, is I feel fine.  I do not feel sick and I am in no pain.  That is frustrating, because through all of this I have never felt sick until a test result, scan or blood test told me I was sick and the meds to "fix it" really made me feel sick.  On the plus side, no one mentioned chemo or radiation to me this time and that makes me very happy. If I were experiencing new pain, which I am not, then they would send me for radiation. If you are concerned about the spot in my skull, traditional treatment is Zometa and hormone therapy.  The spot on the skull is no more or less risky than any other bone occurrence on my spine.

So that’s it.  It is business as usual for the next three months when hopefully we will have enough information to determine the true breadth of the metastasis and a clear plan of attack. I will report more when I know more. If you are wondering how I’m doing otherwise, I’m doing surprisingly well. The last time I was really sad and afraid, now I’m just pissed. J.R. has been my rock, as usual, and right by my side the entire time. I don't know what I would do without him or the girls right now, they help make this unbearable situation tolerable.  I'm so blesseed to have them in my life.

I really don’t know what to expect in the short or long term but I will continue to live my life the way I want until I can’t do that anymore. I really don’t know what else to do other than fight like hell and enjoy the life I have. We will make great use of my new ski's that J.R. got me for Christmas, and we will start planning for our Italy adventure in late April - Early May.  I know many of you have been praying for us and we really appreciate that. Keep them coming please.

I hope that you are all well and that life is good for you today.

Love to you all and God Bless!

Jen

Tada does Ta-Ta's

Hi Everyone,

Here is a sentence that I would have bet would never come out of my mouth. I got new nipples today. Yup, by a gal named Tada. Can’t make it up can you? Last year about this time I had some more reconstructive surgery and I finally got to a point where I was ready to finish it all up. Who ever thought it would go on for 3 years?

I made an appointment with my plastic surgeon and scheduled time with their tattoo specialist. Believe it or not they do this right in the Dr.’s office and it took about an hour and a half. For those of you who have tattoos it was exactly what you think it would be like. For those of you who don’t have any, I’m thankful that the skin in that area is mostly numb. Today they don’t look like the final product will, apparently there is quite a bit of fading after the initial procedure. Not to gross any one out but I was told that they would look like pepperoni’s walking out the door and sure enough, they look like two pepperoni slices. But I am pleased because they cover up scars and will look fairly normal when I’m done.

To get ready for the tattooing I was told to go to a store called “Underneath It All”, and buy a pair of stick on nipples. I’ll let that sink in for a moment. Fortunately these folks work with breast cancer patients and no one was remotely shocked that I walked in and asked for them. They even gave me a glass of wine and a brownie. We love them for that!  So I tried on a couple pair and last night I put them on and was amazed at how real they looked. Who knew rubber could look so good? I should have bought these a long time ago; they sure made a difference in how I felt about what I’d been looking at for the last 3 years.

What a process huh? So these will fade a bit, need to heal and then if I want more detail I can go back again in 6 weeks and have more work done. Which I’m certain I will do.

Note from Guest Author J.R.:  Sorry guys, pictures for this blog entry are sadly not available!

On another note, I am still participating in the Zometa trial and have maintained the “stable” condition of my last report. My tumor markers are still in the normal ranges and the scans are coming back with no significant change. I will have some more scans next month for the trial, hopefully the disease will stay put.

So that’s it for me. I can’t believe how quickly this past year has gone and 2010 is right around the corner. I hope this note finds you all well and wish you and your families a Happy Holiday Season and a Happy New Year!

Love to you all,

Jen

I've Graduated

Hi Everyone,

I’ve graduated. I saw my oncologist this morning and was given some good news. First and foremost, my tumor marker test, CA 27.29, came back again at 31. That keeps me within normal ranges of 0 -35 and makes me extremely happy.

Also I’ve had a bone scan, a bone survey, PET / CT scan and MRI within the last 3 – 4 weeks. I swear all these scans are going to give me cancer. I’ve been doing these for the clinical trial that I’ve signed up for to determine the long term effects of Zometa. What did they find you ask?

Well the bone scan and bone survey came back normal. That’s not exactly what they were expecting to see. I had them compare those scans to the ones I had in October that came back “fine” when I did in fact have cancer in the bone and they came back looking the same. According to the Dr. they should have seen much more than they did, as she put it, “My bones should have been lit up from the radiation and Zometa”. None of that was present. I guess some people don’t respond to certain kinds of tests, in my case its bone scans.

So they ordered a PET / CT scan. Not a big fan of the PET / CT process but it’s OK. This is the one that I have to drink that funky cold berry flavored Elmer’s glue concoction, have an IV to receive something called Contrast and get injected with radioactive glucose. It’s quite the process. In any case, the PET / CT came back that the majority of my cancer has been “sclerosed” over. What does that mean? Well it basically means that the radiation and Zometa have developed “scar tissue” of sorts over the lesions on the spine. That’s good. There is an area on L3 that is still active with disease but not growing. That’s good too.

Based on the PET CT scan, Dr. Bowers wanted to also get an MRI to track the disease. I had that last Tuesday. They did find something of interest on S1 that they can not determine yet if it’s just something funky on my spine because my back is a total train wreck or if there may be new activity for cancer. I will have another MRI in 2 months. I had that area radiated too so who knows what’s there, this was my first MRI since radiation was done.

So I’ve graduated. I’ve graduated to a “stable” condition. I’m very happy to get to a “stable” condition, now instead of seeing my Dr. every 6 weeks I get to see her every 8 weeks. I’ll still be there 2 or 3 times a month but this is very good news for us. I will continue to take part in the Zometa clinical trial and live my life as normally as I can, because this is what we can do today.

As you know, I will be walking in the Breast Cancer 3-Day on August 21-23 and am totally ready. So far I’ve walked over 450 miles of training this summer to get ready for 60. You should see my feet, the person who gets me for the pedicure after the walk is really going to earn their tip. I’m looking forward to walking with my teammates and hopefully raising enough money to finally beat breast cancer or at least continue to arm oncologists around the world with more ammo to treat this disease. We’re hoping for great weather, no injuries, limited blisters and great stories for Team Tittsburgh. Wish us luck!

Thank you all for your time today and continued prayers for our family. I hope this finds you all well and that you’re having a great day today!

Love to you all,

Jen

24!

Hi Everyone,

Quick update for you all. I had an appointment with my oncologist last week and I have some really good news to share with you. As you know I am still being treated for metastatic breast cancer in the spine and the last scan I had after radiation and Zomata was very favorable. Well the news keeps getting better. Since I’ve finished radiation, I’ve been receiving Zometa every 3 weeks via an IV and it’s really proving to be a miracle drug for me.

Every 6 weeks I get a blood test that measures my tumor markers via the CA 27.29 test. Normal ratings are 0 -35 and when I started this whole deal again in November I was up to a 79. Last week my numbers came back with a 24, which is probably the best my numbers have been since I started this whole shin dig in 2006. What does that mean for me?

Well it means that I will continue to receive Zometa. It also means that no one is going to be rushing me into any scans in the near future to look for cancer which does not break my heart in the least. So in October I will have my normal bone scan, blood test and chest x-ray and I won’t have to do another PET CT scan until next spring. Yeah! So for the moment, it appears that we have the cancer under control in a way that I can continue to live life like a normal person. Whatever that looks like.

Next bit of news, since I am getting close to receiving 12 Zometa treatments, the recommended dosage for breast cancer patients per the FDA, I am considering taking part in a clinical trial for Zometa. There is a study in progress through oncology offices to see what the long term benefits of receiving more Zometa treatments would be beyond the recommended one year. Oncologists are having such success with this drug that they want to give it to their patients beyond 12 treatments. The FDA and Novartis, the maker of Zometa, are looking at what a monthly vs. quarterly treatment path would look like after the initial treatment has been given.

So what is in it for me? Well a couple of things. One, I would be doing something that will benefit many people down the road with this research, just the way I have benefited from those before me. Two, all of my medications, scans, blood work etc. will be paid for by Novartis instead of my insurance company. And three, I will continue to receive a drug that is doing really great things for me today. I am very excited about this study and look forward to getting started.


Lastly, most of you know that I am walking in the Breast Cancer 3-day late this summer. Most of us have met our quota for fundraising so we can train to walk 60 miles over 3 days without dropping dead. I want to thank you for your financial support of our team during these economic times. We appreciate it so very much. We’re very close to our goal of $16,300.00, we’re only $2,500 away! Whoo hoo! For those who still would like to make a donation my link is to the right of this entry. You can get to other team members who have not reached their goal there or to the Breast Cancer Bike Ride web site that our friend Kari Mitchell has started in memory of her mom. I will not be riding in that event but I will be a crew member for those who are.

We had a great weekend of college graduation activities on May 16 and 17. Nicky earned her Masters in Education from Concordia and Steph earned her BA in Political Science from the University of Minnesota. Jessica was able to join the celebration via Skype all the way from South Korea. It was a great weekend with family and friends!

So happy spring to you all, I hope this note finds you all well today. Thank you again for your love and support, I appreciate it very much. Have a great day!

Love to you all,

Jen

Gratitude and Roller Coaster Rides

Hi Everyone,

First let me start this note with this…..YOU GUYS ARE AWESOME!!!!!! I can not thank you enough for the calls, letters, cards, e-mails and personal visits. You overwhelm me with your support, encouragement and prayers. You collectively gave me exactly what I needed to get past all the emotions I have been feeling. Thank you so much for that. I wish I could share with you the lessons you taught me this past couple of weeks but even I can’t write that much. ☺ You gave me hope, encouragement, permission, purpose, perspective, information and a good old fashioned ass whooping. All of which was just what the Dr. ordered. Thank you!

I mentioned in my last blog that I was scheduled for a PET / CT scan last week. We got the test results back and things are looking really good. First, the blood work came back with very good news. If you remember I have a regular test called the CA 27.29 which is a tumor marker test. Normal ranges are between 0 – 35 and when this whole thing started over I tested at a 79. My test result came back a 31, and that is one of the lowest results I’ve gotten in a long time. So yeah on that test.

Second, my PET / CT scan indicates that “most” of the cancer is gone on L3 and L5. I don’t know what “near complete interval resolution of what was abnormal metabolic activity” technically means but it sounds really good to me. Dr. Bowers said that I will have another PET / CT scan in 3 months to see if the lesions have been reduced further. She said that these results are better than even she expected them to be and credited the Zometa treatments to the reduction in the lesions.

This Zometa thing is really becoming a big deal in the treatment of cancer. Some recent studies have shown it to reduce not only cancer in bone but early indicators suggest it prevents it from coming back in tissue too. I like the sounds of that. Dr. Bowers also told me that breast cancer that metastasizes in bone does not usually go else where. I like the sound of that too.

So that is my update for the time being. We are going to keep our fingers crossed that this will keep shrinking and I won’t have new lesions develop elsewhere. Again, thank you all for your support, you will never know how much you helped me. Take care, God bless and have a great day!

Love to you all,

Jen

Jen Rant

Hi Everyone,

Let me start out with a thank you. I really appreciate the thoughts and prayers and words of encouragement, those are very helpful to us. I don’t have anything new to report as far as my health goes at the moment but I will have another PET / CT scan this week. I guess the reason I’m writing today is to share with you some of the things I have been going through emotionally. JR and I had a long conversation about this a while ago and he suggested that I share this with you all.

I’m really struggling with this whole cancer thing. I’m not feeling any of the things you’ve described me as being lately. I don’t feel positive, I definitely don’t feel strong and I know that what I have, I will not beat. It’s not curable. I can live with this for many years but unless I get run over by a bus or something equally as stupid, this will most likely be the thing that I die from. I’m having a very hard time wrapping my head around that one. Which leads me to why I am writing today. I need your prayers more than ever right now.

I feel like I’m walking around with this tremendous weight on my shoulders. Cancer is on my mind almost 100% of the time. It is so disruptive and time consuming. There are times that I find myself consoling others and I’m trying desperately to convince you that I will be OK and that I am OK. And you know what? I’m not OK. I’m unbelievably sad, I am very afraid and I am very, very angry. I’m feeling emotions and reacting in ways that are all new to me. So if I act like a total nut job, please cut me some slack?

I’ve had plenty of practice dealing with adversity in my life to a point that you would think I’ve been bred to deal with this whole cancer thing. I’m not feeling very prepared right now. I find myself focusing on things that I will not live long enough to see. Or start thinking about people that I will leave behind and I am overwhelmed with sadness.

Over the holidays while we were visiting with JR’s dad and wife, we were gathered in the living room talking about Steph and Nicky’s upcoming graduations. And I thought to myself how fortunate Don and Bev are, to live long enough to see their granddaughters achieve so much in their lives so far. And then I realized that I will not be that lucky. I won’t live to see any of my grandchildren graduate college. I may not live long enough to see them graduate from Kindergarten. I may not live long enough to make any sort of impact on their lives at all or have them remember who Mom-mom Anderson was in the first place. JR will have to be a Pop-pop all by himself and I don’t want that for him. I want to be there with him to experience those things together. The thought of leaving JR behind is more than I can stand. That we will not be together is unthinkable for me.

And I think to myself, I WANT TO LIVE DAMN IT! I really, really want to live! I don’t want to die! And I get very angry because I see perfectly healthy people throwing their lives away doing nothing. Nothing for themselves or for any one else and I’m pissed! Because that person, who contributes nothing to anyone, that person who totally wastes their lives giving nothing and taking everything, that person gets to live. For a very long time. That person will get to live to be old enough to complain about all the things growing old lets you complain about. And I will have to die at an early age and I want to cry “That’s bullshit!”

I have a life, one that’s worth living and I feel unbelievably cheated that it will be cut short. Oh sure I’m not out raising money to cure cancer, KJ, or delivering Meals on Wheels to the needy, Joanne, or spending time with the elderly because their families don’t, Jules. But I still feel like I have a worthy life and I’d like to be around a lot longer than I will be. Trust me, I am not taking a single moment that I get to spend with any of you for granted. I am so blessed each and every time I get to be with my family and friends and I appreciate every single second of that time together.

So I know I have an “X” amount of time left, and I think, OK Jen, what are you going to do with this time? I wish I could tell you that I’ve come up with something really cool but I haven’t. The best I can come up with so far is to enjoy as many moments that will take my breath away as I can. And I have to tell you that’s pretty easy to do if you’re paying attention to those around you. Time is the most precious thing we’ve been given.

Time. How much time? I have no idea how much time. That’s one of the most frustrating parts of this fight. Every thing in my life, your life, all of our lives pretty much have a beginning, middle and end. My original diagnosis had this whole plan laid out for me, surgery, eight chemo sessions, Tamoxifen treatment, 3 month check ups etc. There was a beginning, middle and end. This time around, it’s a wait and see game plan. How does one fight and work a plan that has not been set? This is not something I am equipped to deal with. All this waiting and not knowing is awful. I know how to fight something I can see. I know how to fight with a game plan. This, I have no idea how to handle this. Because this is the beginning, everything from here on out is the middle, and the end will be the end. I don’t know how to square that one in my head or my heart.

So these are the types of things I am thinking about and it’s pretty over whelming. Every sunset, the full moon, Christmas tree decorations, a great meal, laughing with friends… each time I wonder if this will be the last time I get to experience this. And I know I will continue to ask myself that question over and over. Or I’ll be sad when I think about something that I won’t ever get to experience in the first place. I don’t know how to stop myself from doing that.

I really hope when you read this you don’t hear me saying poor me, or I’m giving up or think I’m sitting here just waiting to die. I’m not. I will fight and fight and when you think the fight is out of me I will get back up and fight some more. I will not give up. Ever. I know that medicine is changing and improving all of the time and that maybe just maybe someone somewhere will invent something that will save my life. In the meantime, I will be here trying to kick the crap out of something I cannot see and something that does not fight fair.

So there it is. That’s how I’m doing right now. I know this is a process and eventually I will get to where I am living a perfectly normal life where cancer is not the first thing I think of when I wake up and the last thing I think of before I go to bed. And I do get that there are plenty of people out there who have much more serious illnesses than I do and much less time. My heart breaks for those who are ill regardless the severity. I’m just really sad and overwhelmed right now trying to figure out a way to deal with it all. So thank you for listening to my rant. I appreciate it very much. I hope you are all doing well today and that I get to see you soon.

Love to you all and God bless.

Jen