Friday, March 15, 2013

Clinical Trial Update


What a great week!  Whitney was here visiting us and it felt like old times!  We found it hard to believe that she has only been gone for 3 months!  It sure does feel like it has been longer.  It seems like Ryan remembered who she was and of course Justin was just thrilled!  We had Ryan's party last Saturday.  It was great to get to see some family and friends!  For those of you that were there, thank you for sharing in our special day.  For those that couldn't make it or are wondering where your invite was, we kept it to local family and friends, I promise it was not personal:)

This week was fairly uneventful.  Of course as much as I was looking forward to a break from Doctors and hospitals, my mind won't sit still, so I met with a new Oncologist in regards to a clinical trial.  Dr. Hantel is still my primary Oncologist, but he referred me to Dr. Phillips who is with the University of Chicago to see about doing a clinical Trial.  So I met with Dr. Phillips on Thursday. I liked her a lot. Of course opening back up my story to her was difficult.  I immediately had a lump in my throat.  This news is almost a year old, but when you don't have to explain it to someone in months, it was like ripping off a band-aid or having drains removed for anyone that has had drains.  I just hate every detail of cancer!  I want to be able to give the time frame, how I found it, when I was diagnosed, etc. without getting that lump!  I held it together for the most part! 

The study is for Triple Negative breast cancer patients who had residual cancer after chemo and surgery.  There are 2 arms to the trial, which it is a flip of a coin as to which one I get.  The first is Observation, diet and exercise.  The other arm is Chemo, diet and exercise.  I am not quite sure which arm I hope to get....The first you are just observed with scans, log your food intake and work with a nutritionist and are required to work out for so many hours per week.  The second is chemo every 3 weeks for the first 6 months then chemo every 6 weeks for the remainder of the 2 year study with diet and exercise.  Now my first question was, if I get chemo, does that mean I lose my hair for 2 years???  Not that this would make me consider not trying this trial, but it did take my breath away.....2 years?  Well, I guess the chemo does not attack all cells, it is focused more towards blood vessels.  So I would get to keep my hair!  It also does not impact your blood counts (although I heard that with Taxol and ended up struggling to keep my counts up).  This arm also has 2 other chemo drugs that are oral.  One is taken daily and another is taken only 2 times per week.  The biggest side effect they warned me of was it could cause high blood pressure.  No one, including myself, is too concerned with this.  I may have failed to mention, but all during radiation and even at this appointment the other day, my blood pressure is hovering around 90/50's.  I am awake and my ticker is beating but that is low for as busy and stressed as I feel a majority of the time.  They think it is low from my anti-depressant I am on.  Fine with me, I feel fine and haven't passed out!

The study has not been signed off on at this particular hospital so I can not start just yet.  First that has to happen which will probably be within the next couple of weeks.  I have a few things I need to check in to first as well.  One being my reconstruction.  If I get the chemo arm, I would not be able to do reconstruction during this 2 year period.  I meet with plastics in 2 weeks.  Best case scenario, plastics is happy with my skin and they say they can do reconstruction within the month.  If that were to happen (throw me a bone here, I think I deserve this God), then I would get the easy procedure of taking out the expanders and putting in my implants and then could start the study mid-May.  If plastics does not think I'm ready to have my reconstruction, I will need to wait because I have to start the study by June 9th.  The study has to start within 6 months from my mastectomy surgery.  Another thing for me to review is my insurance.  I will be able to keep my work's insurance through December, but after that, I go on Don's.  Certain things will be covered by the trial, but some stuff is billed to insurance.  I need to check to ensure that everything under Don's policy would be covered or as close to covered as possible. So stay tuned!

This coming week should be quiet and uneventful! No appointments.  Here's to hoping this remains the new us!!  At least until I'm ready to start the study and or do the surgery!  It is my terms now cancer.  It isn't up to you!

Love to all!


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