MRI's, CT's and PET's

Scott's back pain is becoming increasingly painful, so he makes an appointment with our primary care physician who orders an x-ray and prescribes some minor pain medication.  Two days later the x-ray results come back and look mostly normal, but just to cover all his bases, and with Scott's history, Dr. Cao orders an MRI.  In order to expedite the MRI we drive down to Sacramento at 8:00 Monday night, exactly one week after the first day of the stem cell collection.  The drive in the car to Sacramento is kind of uncomfortable for Scott and we really think more is going on with his back.  This is a bit worrisome.  Could something out of the blue just coincidentally be going on right as we are about to start the transplant.  What are the odds of that??  We are on pins and needles waiting for the results.


Wednesday the results are in.   They are not good.  They show bulging discs, compressed nerve, and a large mass in the left posterior hip to name a few issues.  All appear to be myeloma related.  Based on these findings, Dr. Cao orders an urgent CT scan.  The next day the CT scan is performed.  This shows more details and more damage to the hips and spine from myeloma including "predominantly lytic lesions" (bone that's eaten away leaving a clear area) throughout the pelvis and a soft tissue mass measuring 4.8 x 13.0 x 13.0 cm (about the size of an orange). 


Well, well.....this is of course not good and is causing Scott quite a bit of pain, some tingling in his left leg, but the biggest problem of all, he is unable to sleep due to pain and unable to sit for more than a few minutes.  Pain medication is being tried and it is a balancing act to get the right amount.  Everything is reported to the oncologist, Dr. Tuscano.  The transplant is still on schedule for January 29th.  They can treat the pain in the hospital.  Scott's counts are still great, his labs are still excellent; he is still showing that he is in remission and in the perfect position for the transplant with his own cells first.  So we move forward and continue to make plans with that in mind.  They set up an appointment with a pain management specialist to get the pain under control and get the right amount of medications so he is comfortable and sleeping and rested and ready for the transplant on the 29th.


We see the pain  management specialist on Jan 21^st.  They do a full and complete workup.  Scott is able to almost touch his toes, has feeling in both legs, although the left leg is a bit tingly. He feels okay, still in a lot of pain when he isn’t on pain medication, and is still only sleeping about 45 minutes at a time all night long.  They prescribe a couple of different pain medications, longer acting, a pain patch that stays on 48 hours, medication with morphine every three hours, medication for nerve pain, a muscle relaxer, and a sleep aide in hopes this will work. We feel SURE this will do the trick and leave very hopeful.


This pain medication works for about three days.


It seemed like everyday it was getting harder and harder for Scott to walk.  He could no longer sit at all.  He ate meals standing up. He worked at home on a laptop standing up.  He could no longer bend over and pick anything up off the ground. His pain was becoming unbearable.  The area where the "orange" sized tumor was warm and large and protruding. His left leg wasn't just tingly now, it was numb. He couldn't feel his leg.  If it was touched he could barely feel someone's fingers on it. Then at other times it would burn so bad just the lightest touch would be excruciatingly painful. He had another spot near his belly button that had a protruding hard lump. Could he have a hernia out of the blue?  We were just trying to figure out what could be going on.  The pain was becoming relentless.  Unbearable.  We called the doctor to have him up medications.


On Tuesday, January 28th we had a final follow-up with Dr. Tuscano before being admitted the next morning for the transplant.  We had made it!! Transplant day was the NEXT morning.  Finally!!!!  Now sitting in the car to drive to the hospital was a very big ordeal.  It took pillows, it took someone to help Scott walk to keep him stead on his feet to get to and from the car to the doors of the hospital.  He shuffled his feet when he walked. He grimaced when he got in and out of the car.  He was in a great deal of pain when he got out of the car when we arrived at the appointment.  A car ride was excruciating even with all the pain medication and pain patch and everything.


The doctor comes into the examining room.  He asks Scott a bunch of questions.  When he finds out that in just two weeks his leg has gone from tingly to almost completely numb and he has a hard lump in his abdomen and the area on his hip has noticeably gotten bigger he says there is no way he can move forward with the transplant until he finds out what is going on. He orders an urgent PET scan. He says that will detect any tumors that might be active in his body.  He says it is very rare, but in about 5% of patients with myeloma, they can have active cancer without it showing up on their lab work.  He double checked Scott's labs.  Still within normal range.  Still not moving much at all.  Still within acceptable range for transplant.  This was very, very strange and the doctor had no explanation for it, except to say that Scott could just one of the lucky 5% of myeloma patients who don't have results show up in their blood work.  The PET scan was set for three days from that day, Friday 1/31.