Staying The Course...

I had a week to think about this latest news, to read the MRI reports and luckily have an impromptu appointment with my radiation oncologist last Thursday when I ran into him at Karmanos while there for blood work and an injection; all before meeting with Dr. F on Thursday morning.

The MRI report and meeting with my radiation oncologist revealed cancerous activity at more than one place in my spine and also elaborated on some of the damage that has remained there for the last few years due to cancer, radiation and other side effects.  The good news is that over the last two weeks, the pain in my back has subsided substantially.     So while my radiation oncologist said we can definitely radiate this area (even though part of it has already been radiated once), he would suggest waiting to play that card until I absolutely have to.  And I agreed.  Radiation to the spine carries a great deal of side effects, not only potential damage to the spinal cord, but also damage to surrounding structures.  The last bout of radiation I had to my spine left me feeling like I was swallowing glass and resulted in dropping too much weight in a few short days from my inability to eat or drink.  My radiation oncologist, Dr. M, assured me I can call him any day, at any time, if my pain returns and I need to get in for radiation.  He is simply the best and I am so grateful to have him on my team...and grateful I don't need his care again quite yet!  

Mom and I headed to my appointment Thursday morning, where we came with a handful of questions, but also a lot of faith in Dr. F and his opinion.  Dr. F shared that there are plenty of arguments to support changing my treatment at this point, but just as many to support watching and waiting.  These are some of the main points of our pretty long discussion together:

• Although I have had a couple new cancerous spots show up in my bones, this treatment protocol has prevented the cancer from spreading to my vital organs, so Dr. F still considers it a pretty successful treatment.
• I had a new spot show up in my lumbar spine last December and we decided to just watch it and it turned out to remain stable and hasn't caused any problems since. 
• My quality of life on this treatment regimen is pretty good.  Ever since my dose was lowered last year, I have much more manageable fatigue and very little in the way of other side effects.
• If we switch to another treatment we have absolutely no guarantee that it will be effective (in the bone or organs), and it will likely be more difficult to tolerate, with greater side effects. 
• The quicker I blow through these treatments, the quicker I run out of options...which is a very terrifying thought.  So, if we can even get another 3 months or 6 months out of this one, that would be great.

When the study was published in 2016 about the combination of drugs I am currently on, it was hailed as a huge success because the "progression-free survival" rate was 9.5 months.  I have been on this treatment for 22 months now so I am extremely grateful for that!  And if I can squeak out some more mileage on it, all the better! 

​On another note, I will be meeting with the Phase 1 Clinical Trial doctor at Karmanos in a couple of weeks to see what trials they have.  It is a scary thought for me because the phrase "clinical trial" has also felt like the words "palliative" or "hospice"....words you hear when things are extremely dire and there aren't many options left.  But luckily, Dr. F explained  it to us in a way that made a lot of sense and didn't feel nearly as terrifying.  

Aside from meeting with the clinical trial doc, Dr. F is going to watch me a little closer for now.  I will still have blood work every couple of weeks, injections every 4 weeks, see him every 8 weeks and get scanned again in 3 months instead of 6.  

I feel in my gut this is the right plan for me at this particular time.  I feel good about it - as does Mike, mom and my doctors.  So we wait...and we watch...and pray that the pain doesn't return and that these rogue cells chill out and hibernate for a good long while.

In the meantime, my blood counts have plummeted once again (never seems to be any rhyme or reason), so I wasn't able to restart my treatment on Thursday.  It does explain some of the additional fatigue I have been feeling lately.  I will have repeat labs done next Thursday and hopefully restart then.

I think that about sums it up.
Thanks for all the love and prayers!
​xoxo,
​Meg