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Wednesday, October 24, 2012

Maintenance Cycle 3 Start

Monday was DFCI day, which began the third cycle of my long-term Revlimid maintenance therapy.  My blood test results were generally good, especially as my anemia seems to be getting slightly better.  The results of the 24-hour urine test were also good, as there is still no apparent M-Spike and no monoclonal protein detected.  Yay!  So far, so good.

By the way, having to collect 24 hours of urine every month before my DFCI visit is a bit of a pain.  I have had to do this more than once while traveling (just think about trying to take a liter of urine through an airport security check).  Then I have to carry the bottle into DFCI disguised in a brown paper bag like a wino on a street corner.  Nobody is fooled, however.  I can't wait to get rid of it at the first opportunity when I get my blood draw.  If I want to grab something to eat before my appointment, I have to lug my unpleasant package through the cafeteria.  That's not a lot of fun either.  But I digress.

On the down side, my white blood cell count (WBC) was a low 2.3 and my neutrophil count was a marginal 1.08.  If my neutrophils fall below 1.0, I will have to take a Neupogen injection to build them back up again.  This is a normal side effect of the Revlimid that I take every day.  Even at 10 mg/day, my counts are marginal, so I expect I will have more problems when I go up to 15 mg/day, which is scheduled for next month.  Furthermore, as we enter flu, cold, and pneumonia season, the last thing I want is to have my immune system suppressed so I won't be able to fight this stuff off.  Nurse Mary McKenney confirmed that Dr. Richardson would probably want to try keeping me at 15 mg/day, using Neupogen shots as necessary to keep my nuetrophils up.  I hate that idea!  I have not met with Dr. Richardson for several months now, but I requested that I meet with him next month to discuss how to proceed with this maintenance protocol going forward.

While I was there, I ran across Tom, the MM patient who had his stem cells collected the same time I did, and his partner, Ellen.  I've written about him before (see my May 1, 2012 post) , and we've kept in touch over the intervening months.  He has had a much tougher time than I had.  His ASCT was much more difficult than mine, and he had a stroke, along with numerous infections, blood transfusions, and setbacks along the way.  He is now undergoing radiation to shrink tumors in his sacrum and hip.  He wasn't feeling well from the effects of the radiation, so we didn't spend much time together. It was good to see him, however, and I hope the best for him in his therapy.  I will continue to keep in touch with him.

Today I worked with Linda from WEGO Health Network ( setting up my computer to do video teleconferencing for my upcoming panel discussion.  I have a nice new Logitech webcam that she sent me (even though I probably didn't need it).  It took a lot longer than it should have, but she finally got me set up on Adobe Connect.  The plan is to record the teleconference some time next week (Tuesday or Wednesday).  As I understand it, there may be a panel of three of us discussing some MM topic of interest.  I'm not quite sure what that topic will be yet, but I have made some suggestions, and Linda will send me an email with several choices (hopefully sometime before we go online).  Here are some topics that we might discuss:

1. introduction/Experience with MM
2. Dealing with the mental part of myeloma, living a normal life while dealing with everything that comes with the disease
3. Early vs. Delayed stem cell transplant
4. Pros and cons of long term maintenance therapy
5. level of response effect on prognosis
6. advice for those dealing with MM after first diagnosed

Their editors will polish up the clips and create a conversational video to post on their website.  This should be a lot of fun!


  1. Your description of the 24 hour urine collection is so true! That is by far my least favorite thing. I can’t imagine sloshing through the airport with “the jug” – how terrible. I usually try to make my appointments on Mondays so I can collect at home Sunday-Monday. I don’t think my co-workers would appreciate the jug in the teacher’s lunch room refrigerator! Although, my husband doesn’t really like it in our kitchen refrigerator either. So gross... :)

  2. Bill
    I see where you are participating in the WEGO healthcare event. They contacted me but I declined , I am too busy at work and i already had been on the Curetalk call in last month.
    I am looking forward to when your broadcast takes place, please let us know so we can observe and learn something! Thanks Keith