Updates & So Much Happening

Hello all!  Again I've waited entirely too long to post, so I have a lot of news.  No way I'll remember everything that's going on, but here goes.  It's probably better this way because I like to think I'll remember, but the details tend to get lost and y'all end up getting less of them.  You may even prefer this way, right?!

My every-three-month scans finally happened on August 23rd.  As I expected, there's been progression.  I could feel this happening even while I was still on Taxotere, which made the wait especially excruciating.  In my left lung I have increased pleural thickening, new nodules, new enlarged lymph nodes, and new loculated pleural effusion (my understanding of this last item is that it's a pleural effusion-- fluid in the pleural space-- that's thickened so it's not removable with a thoracentesis [procedure where a needle is inserted into the pleural space and the fluid is sucked out] that's worked for me in the past.)  My right lung also now has a pleural effusion and increased pleural thickening.  So sad!  My right lung has thus far escaped my cancer and has, during a very low point in my cancer journey, done a bang-up job at compensating for my highly-cancer-burdened left lung.  Also, my liver has several new lesions.  My liver function labs are good, however, so I can be thankful that it's still working fine, even though new spots are visible on CT scan.  Oh, and by the way, I have a "Stable incompletely-healed left posterior 12th rib fracture."  Good to know!  I was never notified of this, so who knows how long that's been there or how it happened.

Interestingly, when the doctor came in with the test results, she said they showed "slight progression," then went on to spend at least 10 minutes explaining it all!  Hmmm ... Perhaps compared to others who are worse off than me??  Or maybe she sees it every day and it truly is slight progression?  Doesn't sound like or feel like slight progression to me.

Both the CT scan and the bone scan proclaim that my "diffuse, multifocal, osteous metastatic disease" is stable.  I call BS on this! How do I know this?  Because I'm having pain.  I haven't had bone pain in over 2 years, and now I do.  Clearly something is going on. Left femur, left hip & pelvis, left lower back are at times requiring pain medication (uggh.)  And who can forget (not me! haha) a couple of years ago, my CT and bone scan showed stable disease in the bones, right up to when I developed a symptomatic growing lesion in my lower spine which required radiation.  This showed up on an MRI, but not the CT or bone scan.

The recommendations were as follows:  see the clinical trial doc on September 6th, as planned;  give my body time to recover from the Taxotere.  At first this sounded like sound advice.  But the more I thought about it, the more it didn't.  I have breathing issues that I attributed to fluid changes in the lungs that have now been confirmed with CT.  I have bone pain which I have not had in years.  My tumor marker is slowly climbing.  My activity level has been reduced to a pathetic level-- I get short of breath very easily.  I really don't feel like I have the luxury of waiting.  I feel like I already have been waiting for quite a long time for clinical confirmation of what I've known in my gut for many weeks.  All of this, and also considering the rapid progression of my brain mets... let's just say I'm not doing well.  I seem to be the only one in a hurry to get going on another treatment.  There doesn't seem to be an urgency, besides my own!

My doctor also went over some treatment options (to be decided and carried out after I see the clinical trial doc.)  There were three. My understanding was that these were the only three left for me. For the first time ever, my doctor didn't say "Oh, we have lots more options available for you."  We discussed the three drugs, and their respective side effects and potential issues.  It was so discouraging. Three.  That's what I'm down to.  :(

It all seems to be happening so fast!  On July 28th, I had lunch with a friend.  I had to look up the date, because I distinctly remember telling her that I felt "inklings" of cancer progression.  I could feel changes in my lungs.  The "inklings" quickly turned to true (no doubt about it) shortness of breath, increased coughing, and problems with "running out of air" when I spoke a long sentence or yelled upstairs to the kids.  Then the bone pain.  And of course the fatigue that didn't go away, even after discontinuing the Taxotere. Worsening ever since.  It's like to me, it's all moving so fast, but no one seems to understand/believe me.  Was about to insert another sad face here, sorry.  You get my point.  I'm in a pretty bad way, can you tell?

After much deliberation, I've decided to look into treatment elsewhere.  The time has come in my metastatic breast cancer journey where I need to see ALL of my options.  I have to have more.  I'm now seeing another doctor, in addition to the doctors I see at MD Anderson.  I'm being seen at another facility, because perhaps they have research studies going on that MDA doesn't.  Maybe having some fresh eyes look at me and my long and complicated treatment history can uncover something new. Treatment in a different direction, with a different approach, perhaps.  Ironically, my doctor leaving MD Anderson has turned into a blessing, allowing me to think outside the box and to see the big picture.  With my favorite doctor no longer there and my treatment options dwindling, I feel the freedom to broaden my options by considering facilities other than MD Anderson for my care.  God is at work, even when our circumstances don't make us feel like He is.

As it turns out, my appointment with my MDA clinical trial doctor had to be rescheduled because my Guardant test results (a blood test ordered after my first visit with that doctor) weren't back in time.  So I'm still kind of in limbo with that treatment avenue.  In the meantime, I have seen another oncologist who recommended that I have a liver biopsy.  The idea is to get a fresh, updated look at the cancer that's growing in my body right now.  Cancer cells can mutate over time and certain characteristics and markers noted in a person's original tumor tissue can also change.  In my case, my first breast biopsy and subsequent mastectomy were 16 years ago in 2000!  I've actually had, I believe, 2 biopsies since then, the most recent being in 2010.  One was in 2006, taken from a new and noticeable lump right on my mastectomy scar, when I was first diagnosed as metastatic.  Another was in 2010 when I developed palpable lesions in the soft tissue on my left side, right about where the left lung drains.  Not only can your own cancer cells change, but the testing that can be done in pathology has also grown to include genetic testing, etc.  I'm scheduled for the liver biopsy next week.  Oh boy!

Next week's gonna be a rough one.  Three of the five days are entirely taken up with my health issues.  Monday, the biopsy.  Two hours to pre-op, short actual procedure, then 6-8 HOURS post-op observation!  Because it's the liver, a very vascular area, that a needle will be stuck into and tissue removed.  Tuesday, another doctor appointment and I'll be starting my new chemo drug, Ibrance!  It's been approved by my insurance company, which I was told could potentially be an issue.  Let me say here that I was going to have to open a big can of whoop-ass on them if they didn't approve it.  This is my life, people!  Literally, could be life or death.  Thankfully I didn't have to do that.  The Ibrance is by mouth, so I get to poison myself, at home!  Woohoo!  It will be in combination with 2 other drugs, which are injections.  I should be receiving the injections Tuesday, as well.  I'm a big baby when it comes to injections, not gonna lie.  I'll try to be a big girl this time, promise.  Tuesday evening, I have my four-week-post-gamma-knife MRI of the brain.  I'm nervous about this one, because my last MRI showed progression after just 6 weeks from my first one.  Then Thursday, I see Dr. Karp at MDA, the clinical trial doc, to get my Guardant results and word on if I'm eligible for anything.  Unfortunately, a diagnosis of brain metastases tends to disqualify a patient from many research trials except for some Phase 1 trials, which in my opinion would be last resort.  That is, after I've exhausted all existing drugs that have been proven to work for some people.

So, so much I wanted to cover here, but I see this is already pretty long, AND, I'm tired.  Thanks for reading!  We could use some prayers-- it's been pretty rough on me and the family.