What do you mean it isn't working?

Back in November when the dreaded cancer came back (also known as "recurrence") there was a fairly new drug on the market to treat the type of  recurrent breast cancer I have.  I was told it was even pulled from the study early because they were having such great success with it.  This drug, Ibrance or Palbociclib in combination with Letrozole - another drug to help block the production of estrogen, has been shown to stop the progression of disease for up to 2 years.  This has been an exciting break through in treatment, and I was glad it was available to me!  After the first three cycles another PET/CT scan was done on Feb. 12, 2016 to see if there was any progress.  At this time my cough was barely present and the bone pain in my back and hips had decreased, so symptom-wise things were better. The scan showed that all my original spots were stable, or slightly decreased.  The large lesion on my right hip had significantly decreased.  However, there were a few new spots that lit up - one in my left femur, more lymph involvement in my left lung and a couple more spots on my left hip and sacrum.  At this point my AZ Oncologist was "pleased with the results so far."  I was puzzled as there were clearly new spots on the scan that weren't there initially.  He explained that sometimes the cancer cells can be in those spots just brewing, but once they are hit with therapy they get irritated/inflamed and will light up.  He made sure to let me know that this is why doctors read the scans and patients shouldn't draw their own conclusions.  I do agree with that, but I have been a nurse for 23 years and feel like I do have some idea of what something looks like that may be concerning...Anywho, we left the office with "good news" but still, I had that feeling in my stomach, the nagging one that is telling you something is just not right. 10 days later we were on our way back to Utah with a Uhaul filled to the brink.  There are so many things I love about Arizona, the most important being my sister and her family, but after many long prayers I had the feeling that I needed to move back to Utah as I still had 2 children there that I wanted needed to be close to.

Fast forward to March 25, 2016 - my first appointment with Dr. Litton since I moved back to Utah.  I always love going to see him.  He takes as much time as you need and he answers every question you have without feeling like he has to hurry up to see his next patient.  He is good and kind and so so smart.  No matter how bad things are, he has a way of calming my nerves and making me feel better. 2 weeks prior to seeing him my cough started becoming worse again, the pain in my back was increasing and the right side of my neck was tender.  I sort of thought it was sore muscles in my neck, but I was wrong...it was a lymphnode that was bigger than it should be.  I was having difficulty breathing, shortness of breath and I swear it was all I could do to walk up one measly flight of stairs at work every day.  I know I'm out of shape, but I didn't think I was THAT out of shape.  After a long discussion the phrase I took away from our visit was "I can't say I'm not concerned." He was afraid the magical miracle drug combo that was supposed to work for 2 years had stopped working after 4 months.  So he ordered a CT scan to see what the heck was going on in my lungs.  March 28th I was scanned with contrast and I met with Dr. Litton again on the 31st.  There were some minor changes in the lung lymphatics where my cancer is hanging out, but most importantly I had bilateral pleural effusions...the reason I can't breathe!  So for those of you who don't know what a pleural effusion is, here is a little lesson:

Fluid can build up between the lung and the chest wall -it causes compression on your lung and makes it difficult to breathe.  It also, by the way, is painful and when you lay on your side it feels like you just might die...  This is what it looks like on an xray:

I don't have a picture of mine, but it isn't quite as bad as this one looks. And I have fluid on both sides.

So, we had another long discussion.  Really, there should be no reason I would have a pleural effusion...except if the cancer is causing it. Since cancer is a sneaky, mutating, insidious, son of a motherless goat - Dr. Litton wanted to get a biopsy and see if things have changed.  The first option was to do a needle biopsy of my neck lymphnode and if that wasn't possible he wanted a sample of the fluid around my lung.  This is called a thoracentesis.  I have seen this done on numerous occasions and would gladly choose to never participate in this type of activity.  Sticking a needle through your ribs, muscle, cartilage and into that fluid space next to your lung is not my idea of fun times.  However, the only way to know how to treat the beast was to get a sample of something so it can be tested.

I was scheduled the next day, April Fools day, (no joke) for the fun to begin.  They did an ultrasound on my neck lympnode and decided it was too risky to try for the node as it was wedged in between my jugular vein and carotid artery...2 large blood vessels that you don't want to mess with.  So, it was to be that the thoracentesis was inevitable.  Ugh...My cute doctor that I work with at the clinic, Dr. Kernan was so kind to suggest I take some valium prior to the procedure.  I would have rather had some ketamine and versed, but apparently, they only use this on kids to sedate for procedures.  I guess adults are just supposed to be tough and bite the bullet.  If you have to have a procedure, you should hope you are in a children's hospital...conscious sedation is a lovely thing. This is what it looks like...and it doesn't feel good at all - even with valium on board and lots of lidocaine.

They were able to pull some fluid off - unfortunately there were several pockets of fluid so they weren't able to get a lot out with one poke which I wanted so I could breathe, but I didn't want to be poked more than once.  30cc of yellow fluid was withdrawn and sent to be tested.

I met again with Dr. Litton yesterday for the results and the plan.  The bad news is that the fluid was full of cancer cells.  The good news is that it is still breast cancer and not some additional cancer, and that there were plenty of cells to test.  If there were not enough, or no cancer cells I would have had to get the neck lymphnode cut out by an ENT to test it.  Unfortunately they had sent the cell blocks to ARUP for further testing and the results of the receptors that we wanted weren't back yet.  So, here is what we know so far.
1-It is still breast cancer...I know that seems weird because it isn't in my breast, but that's what happens when it spreads all over your body.
2-The treatment that is supposed to be working, isn't working.
3-I have to start a new drug that is chemotherapy called Xeloda or Capecitabine.  (what I was on before was considered targeted/hormonal therapy.
4-We are waiting on additional testing of the cancer cells to see what has changed to make them not respond to therapy.
5-I'm not happy about any of it.
6- FIIZ makes things just a little bit better.

So, now I'm just waiting for the insurance company to authorize the use of this drug - it has to come from a specialty pharmacy so there are all kinds of hoops to jump through as is usually the case with insurance companies.  I'm not good at waiting.  I guess this is one of my tests in life that I just can't seem to figure out.  Patience is a virtue...I must not be very virtuous.  :)

Be brave, my heart. Have courage my soul...

Tiffany