Thursday, June 14, 2012

Tmeline of Events through 6/14

12/14/10  Bicycle accident in Jersey City where I broke the head of my right femur.  I.e., broke my right hip.
12/16/10  Pin & Repair surgery on the hip at Beth Israel Deaconess Medical Center in Boston.
November, 2011  Resume running & biking.  Running quite slowly, but gradually making a comeback.
2/19/12    Brush burning resulted in a sore back.  Refrained from running for a week, then resumed.  Seemed OK.
3/10/12    Brush burning #2.  Developed very sore back during the day.  Unable to complete the work, as I just had to sit down to relieve the pain.  Never had a major trauma, just normal hauling, bending, and shoving.
3/12 - 3/23  Visits to Chiropractor Greg Symko.  Ultrasound, electrical stimulation treatments.  No effect.  Terrible pain getting down on or up from the treatment platform.  Ended up taking treatments virtually standing up.
3/19  Symko sent me to Emerson for an x-ray of the lower back.
3/21  Symko says x-rays reveal 2 compression fractures of vertebrae.  His treatments will not affect them.
3/27  Visit Back Doctor Stefan Muzin.  General diagnosis.  Orders MRI for further diagnosis.
3/29  MRI confirms 2 compression fractures, some rheumatic wear on vertebrae.  Muzin prescribes back brace to stabilize the bones + Vicodin to deal with pain.
4/2    Bone Density Scan.  Ordered by Dr. Kafina's office, but requested by Bridget (daughter-in-law).
4/4    Fitted for Back Brace
4/5    Pick up Back Brace
4/6 - 4/22    Nepal.  Quite painful, as roads are 60% bone-jarring potholes.  Ended up standing on steps of bus where the door opened in, with bent knees to absorb the shocks of the potholes.  Refrained from many activities, and used 2 walking sticks to move around.  Clearly sustained additional damage.
4/23   Dr Muzin, x-ray.  Quite hard to get into position for the x-ray.  X-ray reveals 1 new fracture, 1 of  existing fractures made worse.
4/26   Dr Kafina (primary care physician).  Bone density scan indicates osteoporosis.  The definition of osteoporosis is 2.5 standard deviations below normal density.  I am 2.7 standard deviations below.  Refers me to endocrinologist Dr. Anca Goller.  Prescribes Calcium Citrate + Vitamin D, plus an extra dose of Vitamin D.
5/7    Dr Anca Goller did a thorough inventory of symptoms, history.  I am now 2 1/2 inches shorter than originally.  She ordered a full array of blood tests to identify the cause of the bone problems.  Informed her of appointment to see Dr Rosen at BIDMC.  She knows Dr Rosen, as she did a residency round with him.
5/7   Dr David Green agreed to allow me to get off coumadin.  Barbie had found a 2007 study that shows males taking coumadin have a 63% increase in bone fractures.  Generally the doctors dismiss that study, as coumadin is very widely used and considered to be understood.  Dr Green prescribed lovanox to be used whenever I go on long plane flights, to be administered by self-injection.
5/9    Report from Dr Goller.  No smoking gun in the blood tests.  Yes, a high level of a protein associated with Multiple Myeloma, but not as high as one would expect for a disease that would cause my bones to break.  She sent the results to Dr. Rosen.
5/14   Dr Muzin again.  Pain has migrated to upper back.  Orders another x-ray.  Result of x-ray is a new compression fracture in the thoracic spine.
5/18   Dr Rosen.  Very thorough exam, ordered yet more blood tests.  Said he would speak with Dr Levine, and expedite the appointment with him.  Ordered MRI of both upper and lower back.
5/20    MRI reveals yet more fractures.  1 new one in the lumbar spine (total now 4) and 4 new ones in the thoracic spine (total now 5), for a total of 9 fractures.  No wonder I was hurting.  And I have been doing NOTHING.
5/24    Call from Dr Rosen.  Still no definitive diagnosis, but a treatment.  Reclast, which helps build bone.  Same treatment for normal osteoporosis and multiple myeloma (MM), just MM indicates a much more frequent dose.
5/25    Infusion #1 of Reclast.  Meet with Dr Levine, who also probed background, symptoms.  Dr Levine performed a bone marrow biopsy, the test to determine MM or not.  Went to NOPCO to get back brace adjusted, as it was really painful.
6/1    Dr Levine delivered the diagnosis: MM.  Normal levels of plasma cells in bone marrow is 2%.  Less than 10% is considered within range.  I have 50%, which is a positive indication of MM.  50% is bad, but he has seen as high as 95%, so my disease is in an early stage.
6/5   Start treatment.  Treatment plan is to receive 4-6 cycles of chemo-therapy to knock down the MM.  Then to harvest my plasma stem cells and freeze them.  Then they will admit me to the hospital, attack the bone marrow with aggressive chemicals, totally wiping out my immune system.  Then (when I am on death's door) they transplant my own stem cells, which should grow into a replacement bone marrow system without MM.  Finally, you are on a maintenance dose of the chemo-therapy to prevent any recurrence of MM.  The actual treatment went without any major effect until 11PM, when nausea kicked in.  Also not sleepy, so got up and wrote an email to the people on the Nepal trip.  Subsequent treatments produce less nausea, as I took antacids and ate less.  The wakefulness did persist, which is totally unlike me.
6/11  Second opinion from Dr Laubach at Dana Farber.  Generally upbeat, as MM is now a very treatable form of cancer.  He recommends a 3-drug cocktail to knock down the MM.  Dr Levine has prescribed a 2-drug cocktail.  Dr Laubach mentioned a couple of clynical trials I could participate in, if I so choose.  He will confer with Dr Levine about the 2-vs-3 drug prescription.
6/15  We are scheduled to meet with Dr Levine and get the last treatment of the first cycle.  Then we plan to retreat to NH.
Summary: Bones broke unexpectedly early in March.  Took until the start of June to diagnose MM.  Now on a treatment plan that has good prospects of achieving complete remission.  It won't be easy, and there is disagreement on the specifics of the initial treatment, but the prognosis is good.

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