Tuesday, January 12, 2010

Another day in GD's chair...

Hello folks.

Got my Velcade and a brief visit with GD today. Again, no review of my labs with me and I didn't get a copy. I will make an issue of this next time I see him -- today, he had laryngitis and between that and my rough day at the office I didn't feel like dealing with it.

I managed to see enough to note the following:

* White count is low at 3.7, but not alarmingly low.

* Hemoglobin is 12.7, again just a little low, but not alarmingly so.

* Platelets are back up to 96 after dipping to 89 last week.

I start my week off Revlimid today so these numbers should all have a chance to recover somewhat for next week. I noted to GD that I might discuss dose reduction with BB when I see him week after next, while also commenting that I know BB was considering INCREASING rather than decreasing my Velcade. I don't want to screw up the results of the therapy, since it has been successful. But I'd really like my counts a little higher if that's possible.

I also saw that RDW, that strange marker that I was so happy to see in the normal range, remains high at 14.6. Not crazy high, but high. I was going to ask GD about it...but then he didn't give me any time for questions and I know he'd probably just wave me off anyway. I'll ask BB about it instead.

We discussed my shoulder, which hasn't hurt in two weeks. GD did not think it was recurrence, since when recurrence happens the pain usually is persistent and doesn't go away, or if it does it comes back more sharply pretty quickly. He also didn't seem to think it would be from healing of the bones. The MRI should tell all -- and if it doesn't, I'm sure Bart will order a PET that I'd prefer not to need, all things being equal. We'll see what the MRI says. Hopefully the lesion is healed and that will take care of it. Then we can chalk it up to being over 40 and call it a day.

A number of people with whom I've spoken over the past weeks are headed to Arkansas for testing and potential treatment. If they are reading this, good luck and I hope to see you when I'm there!


  1. Nick, someone on the ACOR listserve directed me to your blog! I'm glad they did. My husband, JIm, dx 10/08 (same as you) recently completed tandem auto sct (July and November). He has not achieved immunofixation negative yet. Doctor has recommended he start Revlimid ASAP. Good to read your thoughts and history! Thanks - - we also love your sense of humor. JIm has a great attitude and is determined to beat this beast. I've favoritized your blog and will return! Best to you and your family. Mary in VT

  2. Mary and Jim -

    Thank you so much for your kind note! I am so please to hear that you went for aggressive treatment -- I think that's the best chance to really knock this disease for a loop and hopefully cure it.

    For what it's worth, Revlimid is pretty easy to tolerate (as is Velcade). Other than my blood counts being a little lower than I would like, there aren't any side effects to speak of.

    Be well, and please let me know if I can be helpful in anyway!



  3. Hey Nick,

    Greetings from San Francisco! We spoke about 2 weeks ago and I'm looking forward to meeting you on the 25th when I begin the TT4 Protocol.

    I'm actually looking forward to the trip - I need a car there so my cousin (and best friend) are pulling a Thelma and Louise (hopefully without the same ending). We're leaving Monday or Tuesday so we can arrive before the weekend and get me settled into my new home. Hopefully we pass a couple of rivers so I can dangle a fly or two........

    Thanks again for the chat, it gave me confidence and lots of re-assurance about this scary new world for me.

    I hope you're doing well, and I look forward to seeing you in LR!

    Bill Bihn