End of Cycle 2

Well, almost the end of Cycle 2.  The difference between Cycle 1 and Cycle 2 is that I am now taking Revlimid, in addition to Velcade and Dexamethasone.  Revlimid is the thalidomide-related drug that costs so much.  I am taking one pill a day for 14-days.  Unfortunately, last weekend there was a change of plans that resulted in me returning to Stow on Monday instead of Sunday.  I thought I had not packed a Sunday Revlimid pill, so I emailed Katie Conway, asking what I should do.  The answer was to skip the day, not to double up on the next day.  Well it turned out that I had packed a Sunday-night pill, so it seemed there was no issue.  But then Monday night we had a memorial service in Worcester, and my job was to pick up Brian at the commuter rail station.  Mentally as I packed my backpack, I said the next step was to pack in my pills.  Unfortunately the mental step was never made actual, so I got into Jamaica Plain without any pills.  Since I take the Revlimid at night (it is supposed to make you quite tired, so better at night), that meant a skipped pill.  I started the pills on Wednesday of the first week, as it took 2 days for the pills to be delivered by UPS.  So in the end I did end up skipping a day, and my Revlimid will continue through next Wednesday.  So Cycle 2 is not really over yet.

I asked Katie Conway (Dr. Levine’s Nurse Practitioner) for all of my blood readings.  I have transferred the to a spreadsheet, hoping they would begin to make some sense.  Unfortunately, very little sense.  Some of the footnotes are instructive.  In measuring the Protein and Immunoelectrophoresis on 5/18 and 6/26 there were footnotes on the PEP and IFE tests.  Don’t ask me what PEP or IFE stand for.  The PEP Footnote reads, “Trace abnormal band in Gamma Region based on IFE identified as Monoclonal IGG Lambda now represents 2% of total protein.  Trace Monoclonal Free (Bence-Jones) Lambda also seen on IFE.”  The IFE footnote reads, “Monoclonal IGG Lambda and Monoclonal Free (Bence-Jones) Lambda confirmed.”  Urine tests were requested both days and footnotes on the U-PEP and IFE Urine tests show different results.  U-PEP: “No protein detected.  Negative for Bence-Jones protein.”  IFE: “No protein detected.  Based on IFE no Monoclonal immunoglobulin seen.  Negative for Bence-Jones protein.”  So I guess I was not excreting any of these marker proteins.

The blood tests do put asterisks against readings that are beyond the normal range.  So I have a number of readings I have highlighted red in my spreadsheet as they are too high (hot), and a larger number highlighted blue, as they are too low (cold).  But none of them make any sense yet.  I either need to do some internet research or speak to someone who can interpret them for me, such as Bridget or Katie Conway.

Generally, I am feeling pretty good.  It has been weeks since I broke any new bones, so the back and ribs are clearly healing.  I probably have another couple of weeks when I need to wear my back brace, and I will continue to take things easy and not do any heavy lifting.  I have an appointment to see the back doctor toward the end of July.  I hope he can do something to correct my posture.  I am now able to walk without my canes for short trips, but I cannot really straighten up my back.  Presumably that is the result of the form in which my vertebrae cracked and have now healed in place.  Perhaps the injection of some super-glue or some cement to help straighten the back would help.  Dr. Levine said to get any such elective surgery out of the way before we begin the transplant.

The two biggest side effects of the medication are 1) the inability to eat very much, and 2) sleeplessness on the nights after taking the steroid.  I can now understand Barbie’s drive to read in the middle of the night.  I do have a pill that fights nausea and insomnia, but it appears to work for about 4 hours.  So at 2AM I am awake and wired.  One night I set up this blog.  Another night I responded to some emails that had been hanging around on my to-do list for a couple of weeks.  Eventually, I take a second insomnia pill and return to bed.  The inability to eat very much was severely tested by the Idlewild picnic.  Freshly grilled meat, interesting veggies, nice salads, and irresitable desserts made for a long afternoon.  I did not succeed in turning enough food down, so I was burping and hiccupping the rest of the day.  Luckily, there was no need to have any supper, so we went for a beautiful sail.  After that my tummy seemed to settle, and the rest of the evening was OK.  But I ate just a fraction of what I normally would have eaten at the picnic.  Maybe next year.

We are up in New Hampshire enjoying gorgeous weather and stress-free life.  Thanks to the men who came up two weekends ago, there are no major projects outstanding that need brute force.  So we are forced to swim, take walks, do little puttering, and take nice sails.  Tough life.