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Crash course in clinical trials

7/31/2013

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Whew!  If you think it's been hard on you to not know what's going on, just imagine how hard it's been on this end!  While I'm not a naturally anxious person (Praise God!), I have felt my anxiety levels rising in this time of limbo-land.

I stopped my last treatment plan on July 17.  I had been on that medicine for seven months and yes, I had some "detox" symptoms.  The most noticeable one was heightened emotions and increased weepiness (Is that a word?).  Crying is not my most comfortable state of being.

The neurosurgeon says that while I have increased lesions in my bones, that they look good and do not show any signs of fracturing.  This is really good news.  Additionally, because I am not in pain (or what little pain I have is easily managed by the occasional ibuprofen), there is no need for radiation at this time.  More good news.

Last night, I received the call I had been waiting for.  A clinical trial is opening up and it's most likely that I will be a part of it.  I still have to go through the complete pre-screening, but all signs so far look good.  I received an additional phone call today giving me much more information.  A crucial piece of info that would have been quite helpful for me is that there is what's called a "four-week-washout" for this study.  This means that no treatments of any kind should be given four weeks prior to the start of the study.  If I had known this beforehand, I wouldn't have gotten so antsy about this waiting period! 

The study is still not "officially" opened, but I have all the paperwork.  This is what's known as a treatment study (not randomized) so I will be given a combination of a known successful hormone treatment as well as the experimental drug.  The study should open next week, at which time, things will happen in a hurry!  Tissue samples need to be sampled (My tissue is already archived at UCSF.) and classified and then tons of appointments for the rest of the prescreening (scans, bloodwork, clinical exam, etc.).  Based on the timing of everything, this looks like the complete pre-screening will begin on August 19.  That's the same week the kids start school so it could be a very hectic time period!  Once I am actually in the treatment plan, I'll have to practically live in San Francisco for a few days.  Lots of followup.  It will then slow down back to monthly check-ins.

Outside of medical things, we've been having a full summer.  We've been back for over a year now, and we continue to marvel at the clear blue skies.  Not tired of them yet!  We like to go to the Santa Cruz Beach Boardwalk and have gone several times.  We took our trip to the Deep South and the kids helped out a week in Vacation Bible School.  We've had lots of guests this summer . . . either over-nighters and simply sharing a meal during their visit . . . and all have been quite fun.  Rachel and Michael will be going to Middle School Church Camp at Mt. Hermon next week.  Art and I are going to try to go on our own getaway for a couple of those days!  :D  We are also hoping to go to southern California for a wedding later in August.

Because of all the activities of the summer months, I've not been as consistent in my Bible writing project.  I'm in Leviticus 21 now (out of 27 chapters).  I had hoped to be finished with it by now, but it wasn't to be.  Leviticus is a troubling book in many ways, but the main take-away from it (so far) is that we are all "unclean" and that no matter what we do to make ourselves "clean," it's just not enough.  All the required sacrifices for this and that and using this kind of ceremony versus that kind of ceremony just paved the way for more legalism and corruption (holier-than-thou type thinking).  All of this points the way to Jesus, the perfect and final sacrifice that cleansed us all.

I've also been participating in a study on David.  I've never really liked David and I can't say that he's grown on me any with this in-depth look at his life.  However, I am learning a lot and I'm quite enjoying the group of women I'm meeting with.  They are incredible people.

Summary and prayer points:

  • That my eyes remain focused on God as my great physician and that the next treatment plan is as successful as He wants it to be.  I do not believe it is God's will that I have cancer.
  • That Rachel and Michael remain focused on God as they process the impact of having a mother with a terminal illness.  (Michael has been talking to me more about my being Stage IV.  I think it just registered with him this week.  Our conversations are good ones.)
  • That I'm able to share God's goodness with people in spite of the "badness" happening in my life.  (I'm writing about this topic in order to share later on.)
  • That all of us have peace in this stage of our lives.  
  • That Art's job continues on a smooth path and for him to find real rest when he's not working. 
  • That we all may be a blessing to others.

As always, thank you for sharing our journey.  The picture is from Saturday, July 27, when I walked the Golden Gate Bridge (from end-to-end and back), a total of 3.4 miles.  I was with a beloved friend and the day was a gift.
Picture
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New treatment plan coming up

7/17/2013

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I had my quarterly scans on Monday (spinal MRI and full body PET/CT).  The results reveal both good news and concerning news.

The good news is that the cancer is still confined to the bones.  There is no evidence of disease in any organs (brain, lungs, liver, kidneys, stomach, etc.).  They all look clear.  Of course, we know by now that just because nothing can be seen doesn't mean that nothing's there, but it is still encouraging to not see anything. 

The bad news of the scans is that I have several new lesions in my spine and one new lesion in my left hip socket.  (This explains the dull ache I've been having in my left hip.)  There are worsening lesions in three thoracic vertebrae (which explains the nerve pain I've been having) and in all my lumbar and sacrum (tailbone).  There are no new pathologic fractures.

All in all, this means that my current treatment plan has stopped working and that it's time to begin a new one.  The medical team is working on getting me into one of two clinical trials.  I am an "ideal" candidate in some ways in that I've not had previous treatments other than what was considered to be standard protocol.  However, that standard protocol may exclude me from one of the trials.  I will find out by  next week what the next steps are.

On Monday, I meet with the neurosurgeon to discuss my spine and to determine what action (if any) needs to be taken.  Radiation is a possibility, or an in-office procedure known as vertebroplasty (bone cement).  My pain level is very low, so it's possible no action will be needed.

I may have to see an orthopedic surgeon for a recommendation on the hip.  It does ache more than I'd like it to.  Radiation may be needed to deal with that.

If I have radiation anywhere, I'll go back to the radiation oncologist who has done my previous radiation.

I'm in good spirits.  While the results aren't quite as good as I wanted them to be, I'm glad to know what's going on.  I had written down what I expected to hear, and this news is better than what I expected!  (I mistook the nerve pain for new mets in organ pain!)

God's story for my life remains a good one.  The steady onslaught of this disease doesn't change that.  However, I do ask that you continue to ask for a complete healing.

Thank you for sharing my life.  I'll write updates as I learn more.
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    God's Story

    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

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