Wednesday, October 29, 2014

Biopsy results, Cleopatra study and totally bombing my first treatment

This blog is long overdue for an update, and if I don't get this up then a huge chunk of this story will be lost forever.

At my last entry I was waiting to go in for a biopsy.  The biopsy went very well.  And, the results were conclusive.  But, there is a story behind that fact too, so let's just pick up were we left off.

I met with Dr. J 10/9/14. We reviewed the results of the biopsy.  The first test results to come back are the hormone test.  I came back estrogen and progesterone positive, as I always have. Next, the perform a stain test to determine if the cancer is Her2 positive.  (I have gone into detail on HER2 before.  You can read up on my post about cancer growth)  The stain came back in such a low range that they wouldn't normally perform a FISH, a florescence in situ hybridization, test. Dr J asked them to perform the test anyway, in spite of some teasing and questioning.  The FISH test came back clearly showing that the cancer is HER2 positive.  Good thing Dr J asked them to run the FISH, because if she hadn't I would have demanded it.  I have always known that as soon as we could run another biopsy we should.  I felt good about the treatment decisions we made, but never felt confident that the tumor wasn't HER2+.  

For those versed in the difference in protocols, it seems moronic that I would be happy with a treatment plan when it wouldn't address the HER2 status.  I can only say, I felt like both treatments were an option but I wanted to have a treatment that would allow me the most strength and fewest side effects at the time.  That would not have been chemo with Herceptin.

So, with the new biopsy information the visit concluded with a dramatically new treatment protocol.  (I really feel like I wrote about this before, but I can't find the post.  If you are reading this again, welcome to my mind.  Sometimes I don't know what has happened before and what is deja vu.)

I will be taking a 3 drug cocktail.

The first, Taxotere, a chemo that will kill off all the fast growing cells (cancer and hair a like) on a 3 week (or 21 day) chemo cycle.  Day 1 is chemo day.  Then on the 22 day we start at 1 again.  I get chemo only on day 1, unlike the last treatment which had chemo on days 1 and 8.  You can tell a lot about the chemo by the cycle.  Giving me more days between doses means that this chemo is tougher- it takes more time to get over it before your body can handle any more.

Secondly, I will go back on Herceptin.  I took this back in 2006 and responded very well.  The side effects I had then were uncomfortable but manageable.  In fact, I was driving myself to and from Utah from Idaho for this treatment. 

Finally, since 3 is better than 2, I will take Prejeta which works along with Herceptin for a synergistic effect.  These three drugs together have been tested in the Cleopatra Study, which you can read about here, here (very technical), or get the cliff notes here.  The great news is this has been a successful protocol for many metastatic breast cancer patients.  They are enjoying "unprecedented" 16 months without cancer advancement.  It is being called phenomenal and unprecedented.  Pretty fancy words when it comes to cancer.  I guess they don't mean as much to me, because they aren't the words I am living for.  I am living and fighting to hear the word - miracle, undetectable, we can't find any evidence of cancer.  I don't mean to sound like this study and protocol aren't good news.  It's great news.  I should be over the moon, but I don't have it in me to hope this is THE ONE.  Instead, I am going to follow the protocol and trust that one of these time God will grant me that miracle I am praying for because until that happens I am still going to die of cancer.  My enthusiasm is tempered and realistic.  I am not ever going to be satisfied with 16 months of hope at a time.  I want to be like the rest of you.  I don't want to know how I am going to die.  I want to believe it is reasonable to think I will live to be 80.

So, I left Dr J's office with this new protocol outlined.  I went to work getting myself psyched up and the children prepared.  I even attempted to get the house prepared, but without friends who filled the freezer with meals and planned for meals in the coming week I would have been lost.  Dr J and team went to work getting things authorized with insurance.  We made the appointment to begin treatment one week later. 

10/16/14 - This was my first long treatment without my mom.  I haven't had a treatment that took so long to administer for about 8 years.  I was grateful to be going into this alone.  I am healthy enough this time that I would have to watch my mom suffer as she watched me there.  I don't think I could stomach that again.  A child should never watch their parent watch them go through cancer.  It's hard to be the sick one.  
I went in to this treatment prepared for the 5 hours on IV infusions (forget that - it was more like 8 hrs) I had my hotspot & laptop, it was almost like being at the office.  I also had my hydration, hard candy and sunglasses for napping.  And, it wasn't like I was there alone, Enrique was with me.  He didn't leave my side once all day.  Notice the black bag?  Some chemo can't be exposed to light because… I don't know why… anything could happen I guess.  And, that was just pouring into my veins.  

Thursday went ok,  Friday went ok, Saturday went ok, Sunday … no bueno.  By Sunday night I was feeling awful.  I asked some friends to give me a blessing (A blessing given by a Melchizedek Priesthood holder, by the laying on of hands and by inspiration, to one who is sick or otherwise in need of special counsel, comfort, or healing. If the blessing is for the sick, consecrated oil is used (James 5:14-15) Learn more about my beliefs here. Within a few hours I was worse yet and called friends back again to stay with the children and take me to the hospital.  I got loaded up on anti-nausea meds and they tried to help with the headaches I was having.  By 1am I was home and in bed again.  Monday mid morning I was still feeling pretty pinky.  This would have been day 5 of my chemo cycle, and that falls right into the nadir point.  The nadir, or low point is clarified here. Another friend took me into the Dr where they gave me fluids, to no avail.  By the end of the day they wanted to close the office and I couldn't even walk out the door.  They arrange a hospital bed for me and wheeled me over to the hospital.  Remember a few weeks ago when I was down and just grateful I wasn't the person leaving on a stretcher?  Well on 10/20 I was that person.

I spent Monday-Wednessday in the hospital as migraine headaches and nausea kept me from being able to rest and rehydrate.  I had great nurses and doctors and I was so thankful to even more friends who visited, brought me soap and lotion so I could get rid of that hospital smell, and took care of my babies.  I was definitely sad to be away from the kiddies - it breaks my heart to think of them home and worried, but they were well loved and cared for.  But, what a happy day when they got home from school and I was there! 

It took the rest of the week before I attempted working again.  

Sorry, this isn't a very fun read, but it tells my story for sure.  If you have had chemo or wondered what it is like, this is a true case.  It is worst than most - usually a hospital stay isn't required. I know in my mind that when I go for my next treatment it won't be this bad because we know what to expect and I have new prescriptions to manage the side effects.  But, my heart is scared. 

I only know one way to handle this - just keep going.  As soon as I regain strength I add in as many regular activities as I can.  I don't look back, only ahead.  And ahead are a few more treatments (3 if things go great, 5 if needed) and an end to this chemo. I have also learned it is a waist to wish this challenge away.  I don't know if the next challenge (or chemo) will be easier or harder, so I am happy for what is good with this chemo. 

What is good about this chemo?  I am glad you asked, because this is a great way to sign off…
1. I have one down and know how my body will respond.  Now I know how to fight back
2. I have good friends around, and I need them! I will be asking for their help.
3. They are awesome at work. 
4. I have the best kiddies ever!  And, we are all under the same roof.

Sunday, October 12, 2014

How I imagine cancer growth

I picture little cancer cells in my body as having a squiggly outline, messy hair and enormous mouths.  I imaging these little monsters hanging out wherever they hang out a in my lymph and blood system, which look like a lazy river.  Each time a source of cancer fertilizer floats by their oger-like mouths start chomping.

This week, with the results of my biopsy, it has been clarified that my cancer is indeed Her2 positive still.  When the cancer originally presented 8 years ago the biopsy came back showing triple positive.

What is triple positive?
It indicates that the my tumors grow in response to the hormones estrogen (as in as many as 75% of cases) and progesterone (as in as many as 65% of cases).  The third + comes from being HER2/nue positive (as in 20-25% of cases).  Her2/nue, often shortened to Her2, is a more aggressive type of cancer.  This was definately the case with me.  

When my cancer was discovered there was a very large and palpable mass.  My Ongologist figured it was probably 10cm.  Between my first and second chemo I could feel one or two additional lumps.  So, in the course of a very short time I believe new masts were growing.  Luckily it was also very responsive the the A/C, paclitaxel and Herceptin regimen I was given. I didn't have any heart health issues which are possible with these drugs other than HBP that was easily controlled and has since almost reversed completely.

When my cancer returned about 3 years ago it was found in my bones.  While a biopsy was performed and extensive testing was done across the country, the results did not indicate the tumor was HER2+ any longer.

So, how did it go from + to - to +?  Bone tumors are very difficult to biopsy - it's a solid matter versus soft tissue.  So, it was probably HER2 positive all along.  In fact, even the biopsy this week failed to indicate being HER2+ in the first test - an ImmunoHistoChemistry (IHC).  Protocol would be to trust the results of the IHC.  But, luckily Dr J requested that they move forward with the next test, a FISH test.  (I say luckily not because I was lucky, but because if she hadn't I would have been angry and insistent that we go back and get the test done. I mean lucky for her since she didn't have to hassle with me.)  It's a little funny to say, "Yeah, I had a FISH test." I feel like I could follow that up with, "they found out I am a mermaid."

Since I was probably always HER2+ and the treatment protocol is different when they aren't treating HER2 I did receive 3 years of treatments that weren't as custom tailored to my cancer as they could have been.  It is easy to ask the question, what was the price I paid for not getting the HER2+ treatment for the last 3 years?  And I will never know the answer.  I don't have to know, because the treatment I received did a great job of keeping the cancer pretty controlled.  I had results that far exceeded average experiences.  I also was able to exhaust a long list of medications.  Had I been treated with a HER2+ regimen for the last 3 years I would have already cycled through a number of chemo therapies that I am just starting now.   Additionally, the drugs I have taken in the last 3 years, while not without side effects, have had side effects that were manageable and allowed me to work and raise my kiddies. 

As I have gone through treatment it has often been my prayer that I would have peace when the choices about treatment I made were good choices that would offer me the best balance between being a druggy and a mommy.  I have had a lot of peace over the last 3 years about the medical choices I have made.  I have been so blessed to know the questions to ask and have felt guided in what I have done.  Another case in point, after visiting with Dr J Thursday I talked to her about adding the bone treatments back into my protocol.  Not that she would have forgotten or not done it, but I am so thankful to know what I need and be able to ensure that my medical team is giving the best of everything I need. 

from the Perjeta website homepage
Starting this week I am going from my 30 minutes of medication (which requires 2-3 hours at the doctor) to a 4-5 hour infusion.  I will go from pre-meds (the anti nausea meds) and a 5 minute injection to premeds, bone strengthener shot and 3 chemo treatments.  (technically 1 is a chemo and 2 are monoclonal antibodies, they are often referred to as chemo, side effects are more mild than many chemo drugs) I will go back on Herceptin, which I took before and had good results with.  I will add perjeta, which from the website looks like it may turn me into a cat. And, to round out the cocktail, taxol. Taxol is a chemo that stops the division of cells, thus making it impossible for those hairy little monsters to divide and grow.  And, because it stops the division of fast growing cells, all fast growing cells are going to get beat-up including hair, nails, gums and the mouth in general, GI track and blood cells, etc.

So I will probably become a hair-less cat. Yes, this is the 3rd time I am loosing my hair this year.  I lost it right about Halloween last year, I remember thinking I should be a pirate.   And, It will probably be gone before the first week of November ends again.  This year I am considering something permanent to decorate my perpetually bald head.  To keep from going on and on about how much I just want to grow long, dark, thick hair I am going to close now. 


Thursday, October 2, 2014

The happy game

Sometimes, even for me, there isn't a smidge of a drop of happy left anywhere in your soul. It's like that right now. 
I have just had all the tough news, emotionaly draining, blood testing, child-rearing, face-booking, "where-are-all-the-good-men"ing, bill paying, x-husband not-hating I can stand for a lifetime. And, I just want to scream and cry and shout. I want to throw a fit so emphatic that the whole universe will be afraid of not giving me just what I want. But, I am too tired to throw a fit. And, I have a horrible headache. So, I need to play what Miss Gae called "the happy game". I have been trying to play for days, but I keep losing. I hate feeling like this. It doesn't feel like me. 
The happy game, where you list things you are thankful for or happy about until you feel it. 
1-I love a nice rain storm, we had one today. 
2-Steak and potatoes - that was dinner. 
3- Tylenol. 
4- Memories of the sea to enjoy on days when the ocean is far away.  I loved seeing half moon bay in the spring. 
5- Ceiling fans. Good when it is hot or cold. 
6- Chocolate milk with ice cubes. Or better yet, crushed ice. 
7- Apples
8- Dreams about what I would do if I won the lottery. If you've been good to me you will enjoy the wealth also. 
9- Dreams of living a vagabond lifestyle. Traveling the world, moving from city to city and finding work along the way. Staying as long or short as I fancy. Learning the languages and becoming part of the culture. 
10- Pretty nail polish. 
11- Keeping up with my C25K schedule. I fight for every step, it's not sexy, but I am on track in spite of a dramatic treadmill incident, my chemotherapy and other medical crap. 
12- Books- or the ability to loose myself if some fictional world for a little while. 
13- Men who are good husbands and fathers. I would have no hope if it weren't for you. 
14- Dreaming (I really dreamed this last week) about sliding all around on a wood floor in my socks. I wish the whole world were wood floors. 
15- Sending my kids to good schools, buying good health care and dental care. We may not wear fashion labels. We don't have most of what I thought I would have in life, but they have a good life and promising future- thanks to me. I do it by myself. And by that, I mean I work hard and the grace of God makes up the difference. I don't have financial support from anyone else. 

Breath in and out.

Monday, September 29, 2014

The whole story of my pending biopsy

I have had a down-turn in my cancer situation.  Recently I completed my 6th cycle of Halaven chemo.  So, in spite of completing CT scans a couple of weeks ago, which came back clear, Dr J wanted to get a PET scan.  The insurance company began denying PET scans about 9 months ago when my CA27.29 blood tests had been dropping.  I just wasn't sick enough to justify the cost of PET scans.  But, in the last few weeks my blood counts have been climbing.  This justified authorization of PET scans, so that is what I got last week.

The PET scan day came - I went in at 6am, got the scan and then went on with my day just like any other day.  The PET returned results I wasn't expecting.  I was expecting nothing since that is what the CT had just shown.  But, instead, the PET showed activity in my back where it has been before, but has been inactive for a long time.  There are also a couple of new spots on my spine.  Additionally, there are spots on my ribs on both sides.  Finally, soft tissue has been compromised again with at least one lymph node in my stomach that is active.

(Active refers to the cells in each of these regions having a higher uptake of the tracer (radioactive glucose) than other areas.  This increased uptake points out where the cancer is making itself at home.)

All those years ago when I was originally diagnosed with metastatic breast cancer they did a biopsy on my bone.  The pathology showed the cancer was still hormone positive, but HER2-.  (Original diagnosis was triple positive for those of you familiar with this) Now, with soft tissue involved again, we are going to get another biopsy. That is the silver lining of this storm cloud.  I don't know if one result is better than another - it only matters that the tests are accurate and conclusive so we can make the most intellegent treatment decision.

Given that the cancer is back in my bones also I need to remember to talk to Dr. J about going back on a bone strengthening treatment regimine.

So, tomorrow I will have a biopsy.  There is a lot of hoopla involved in any medical procedure.  Arrive 1.5 hours early, wait around, be poked by a needle (at least a needle biopsy is what I am hoping for) and endure 30-45 minutes of waiting around until they will release you into the hands of a driver.  So, local anesthetic and lots of waiting, but I can't drive myself tomorrow.  This is my first medical procedure where I have not had my parents to drive me - first time, but not a big deal - thanks to my amazing friends.  I am so thankful for good friends around me who make this all so easy.

Hoping for un uneventful procedure and highly accurate biopsy results.

Friday, September 19, 2014

The naked truth

Here's the truth. It's raw and revealing. It also says a lot about how far I have come in managing the heartache and disappointment of my divorce and X's choices. 

When I see cute videos of women with cancer telling their story with their husband by their side I feel sad. I wish I had a husband who stood by me through this. One who took some of the responsibility for everything life requires to help me bear this burden.  One who loved me no matter what happened through chemo and surgery.  
I look at the husbands in these videos and I think, don't screw this up.  Be a man. Dig deep and become the man God expects you to become. Don't give up. 
The good news, I believe that there are men out there who are good enough and selfless enough to be that kind of man, the kind of man I wish I had and I hope to have someday.