Trials

We met with the oncologist Friday.  He is truly amazing in my estimation and something of a workaholic.  First of all, how many doctors do you know that take appointments at 5:00 on Friday and then make you feel as though they are in no hurry at all?  There is an oncologist on call 24/7, but he also invited me to call him at home if I need anything.  He takes two weeks each year for vacation and plans to be here for my entire treatment.  He seems to know everything there is to know about cancer and then some.  He has a lot of research interests, and seems quite interesting.  It's too bad we didn't meet him at a dinner party or in some other context, but since I need an oncologist, I'm grateful to have him.

We talked about the clinical trial.  He said investigational cancer drugs are generally reserved for terminally ill patients.  This is a trial for women with newly diagnosed locally advanced breast cancer to test whether adding investigational drugs to standard chemotherapy is better than standard chemotherapy alone before having surgery.  The treatment phase of this trial will be testing multiple investigational drugs that are thought to target the biology of each participant's tumor.  The trial will use the information from each participant who completes the study treatment to help decide treatment for future women who join the trial.  This will help researchers learn more quickly which investigational drugs will be most beneficial for women with certain tumor characteristics.  The trial will test the idea of tailoring treatment by using molecular tests to help identify which patients should be treated with investigational drugs.  Results of this trial may help make investigational drugs available to more women in the future. 


Sounds great except for a few things.  I would have to delay my treatment and submit to additional scans and core biopsies to determine the biology of my tumor and whether one of the investigational drugs is thought to target the characteristics of my tumor.  The answer may be no, and I'd be right back where I started.  I'd have to have additional blood work, MRIs, and core biopsies throughout the study.  And here's the deal breaker - they have just finished treating their third trial participant.  The oncologist would of course like me to participate if I'm eligible, and it would be altruistic, and it's possible it could benefit me.  However, I've decided to decline.  Based on where things are with me, they are already pulling out the biggest guns they have so I'm going to go with the standard chemotherapy and pray.

So now the train is gaining momentum down the track.  Or maybe it's more like an avalanche?  I have surgery on the 12th.  Two to four weeks later I will start chemo. For the first two months, I will have chemo every other week.  For the last three months, I will have a milder version each week.  Each treatment takes half a day.  I should be done with chemo near Midori's third birthday.

So what will I do before the surgery?  I'm not planning a boob voyage party though I think it could be a great theme.  We're going to a close family friend's birthday party Tuesday.  I'm seeing my mom and brother Wednesday.  Doctor appointment and wig shopping Thursday.  Gotta get a post surgery camisole. This is a non- irritating garment with pockets for my drainage receptacle.  Did I mention I'll be draining for three weeks?  I'll probably try to have lunch with my work friends next week.  Lunch with Kevin's mom Friday.  I'll probably go to church Sunday if I can find my bootstraps.  Everyone else, I'll see ya when I see ya.  

One thing I forgot to mention earlier is that the surgeon said more than half of patients that have their lymph nodes removed will have lymphodema.  I'll see the physical therapist at some point shortly to figure out how to try and head it off as much as possible.  Another thing I forgot to mention is that the MRI is suggesting a 4 centimeter tumor which is larger than we thought originally, but as long as it's under 5 it still doesn't impact the staging.  They'll know for certain when they get the thing out.  I think I just have one more doctor appointment before surgery unless the genetics testing comes back showing I a heritable mutation.

I feel inclined to say something funny, though I'm lacking inspiration.  So, I'm going to steal this funny story from an email I received.  (P - I hope you don't mind.)

As I read your blog, it reminded me of a friend whose situation was similar to yours.  She was 38 when she was diagnosed with Stage 3 breast cancer (which she beat), and her treatment was similar:  mastectomy, chemo, radiation, reconstruction.  One cancer story that she loves to tell occurred during the time between the mastectomy and the reconstructive surgery. The doctor had given her a prosthetic breast to help “even her out.”  One day, while pushing a shopping cart down the aisle at Walmart, she looked down in horror and shrieked to herself “OH MY GOD, I FORGOT MY BOOB!!” and put her arms up to cover he chest.  (She had forgotten her prosthetic breast at home.)  After a few seconds, she thought:  “Ahhh, what the heck – it’s only Walmart”, put her arms back down, and continued with her shopping.  Adversity has a way of making us reassess our priorities and focus on the things that are truly important in our lives.