CT Scans #14 and Joint Disease in Cancer Patients

     Well...I was very close to being able to do it.  I was almost able to wait a full 6 months between CT scans this time. I initially scheduled this round of scans 6 months from my last ones, but unfortunately in late September, I had a couple weeks of feeling really crappy, (more than the usual fatigue and not just some achiness, but down right pain, especially in the bones of my left hip).  As I have done before, whenever I feel crappy for more than a few days, I convince myself that my cancer has figured its way around my chemotherapy and that I've entered the phase called "disease progression."  Despite trying to be as reasonable and rational as possible, I know that I'm not over reacting...the clinical trial report indicated that the average ROS1 lung cancer patient on Xalkori will have 19.2 months of disease control.  I've been on Xalkori for 55+ months.  (Pretty soon that will be 3-times longer than expected!)  

     Certain that my cancer was growing again, I moved my CT appointment up by a couple weeks. So last Tuesday I was in the CT tube again. I asked the radiologist to not only compare these scans to my most recent scans, but to also compare them to older scans.  I was concerned that, perhaps, the changes in my body were so incremental that the only way any demonstrative changes could be appreciated was by looking at scans from a few years ago.

The good news:  
     The day before yesterday the radiologist called me.  He looked back at my scans from 2015 and feels confident that my cancer is stable. Yay! So, for now, Xalkori continues to control my cancer below my neck. 

The bad news, mixed with some good news:
     The degenerative joint disease (arthritis) in my left hip, coupled with metastatic disease, appears to be worse.  The combination of arthritis and cancer in my pelvis and head of my femur have resulted in progressive joint deterioration. Hence the pain, and I now realize that dealing with pain is exhausting.  The radiologist said that, "...Under different circumstances, a person with a hip like this would talk to someone about a hip replacement in the future." What he meant was, people with stage 4 cancer don't get to get new hips.  I told the radiologist that I had just returned from the CancerGRACE Lung Cancer Patient Forum where I spoke to a ROS1 specialist, Alice Shaw, MD, PhD from Mass General in Boston.  Suspicious of significant joint disease in my hip, I asked Dr. Shaw if patients like me ever get new hips and she said, "Yes!".  Since we are living longer on new therapies, and our quality of life is such that we are able to continue to be active, she has a few patients who have had joint replacement surgeries.  Successfully.  At Mass General, these patients are seen in consultation by a sub- sub-specialist called an ortho-oncologist.  

     So...onto my next health adventure.  I made an appointment for later this month with a local orthopedic surgeon who specializes in hips.  Then, as needed, I'll seek a second opinion with an ortho-oncologist, and knowing myself, a third opinion as well.  

     Oh, also, my next brain MRI is scheduled for mid-November.  I'll keep you posted. And...

...as always, please wish me luck!

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