velcade, round two & a huge thank-you

First off, huge thanks to our daughter Anneke, her good friend Sam and so many family members and friends who contributed to the great success of our multiple myeloma fundraiser this past Friday. It was an amazing night, with so many old friends and neighbours joining our family for a big party disguised as a fundraiser. The food was delicious, the music was awesome and the deals at the silent auction were plentiful. The hall was packed with friends from as far back as my high school and university days, as well as from the three local congregations that I have served over the past thirty years. Along with those from near and far who have contributed online we have now raised over $17,000 in donations to the Hematology Clinical Trials Unit at Vancouver General Hospital. Like I say, amazing. It is wonderful to be part of such a caring and energetic community. Thank-you!

Now, on to the more mundane news of my ongoing treatment journey ...

Yesterday I had a good visit with my hematologist at St. Paul's Hospital. The appointment went as I had expected and hoped. My blood counts reveal that we need to resume treatment. We have received approval for funding for eight more cycles (forty weeks) of Velcade. If the myeloma and amyloidosis does not respond as well to the Velcade as it did in the previous eight cycles we will add a chemotherapeutic drug (cyclophosphamide) to the Velcade injections with the intention of improving the response. As before, I will also be taking a weekly dose of dexamethasone. I am planning on changing my weekly schedule so that my treatment day is Tuesday rather than Thursday. The steroid (dexamethasone) causes me to be energized and wakeful at first but then leaves me feeling fatigued a few days later. This meant that a Thursday schedule left me feeling bleary-eyed on Sundays. Its not a great thing for a preacher to be in a bit of a fog every Sunday. So we are changing the schedule. Now I'll be a bit tired on Fridays, instead. We are keeping open the option of trying Revlimid again in the future. It worked well to control the myeloma and amyloidosis but resulted in an allergic reaction. It seems that it may be worth trying again by beginning with very low doses and slowly increasing to see if my body may not have the same allergic reaction a second time. However, that is for the future. For now, I am glad to be receiving Velcade once again.

I continue to learn about the peculiarities of myeloma and amyloidosis (this is where things get a bit technical ... feel free to stop reading at any point!). I have kappa free light chain myeloma. Free light chain myeloma makes up ten per-cent of all myelomas. Kappa light chain myeloma makes up five per cent (which makes sense since there are two kinds of free light chains: kappa and lambda). What I did not know is that amyloidosis associated with multiple myeloma only occurs with free light chain myeloma. The heavy chains do not have the capacity to be deposited on organs (which is what occurs with amyloidosis). Further, nearly all cases of amyloidosis associated with multiple myeloma are lambda free light chain myeloma. It is quite unusual to have kappa free light chain myeloma and amyloidosis. In nearly twenty years of practice I am only the second patient my doctor has seen with kappa free light chain myeloma and amyloidosis. I don't think it makes a big difference to be a kappa rather than a lambda (although it does make me feel like I'm now part of some blood cancer fraternity). This new learning mainly reminds me of the complexity of these diseases.

My doctor reiterated that the reason we are being quite aggressive in treating the myeloma at present is a result of the risks that come with amyloidosis. The myeloma, while active, is at an early stage. By controlling the myeloma we are also controlling the amyloidosis. Knowing when and where the amyloidosis will show up is very hard to determine. It seems wise to act to prevent damage now rather than to respond to issues related to organ failure later. So, while our focus for the fundraiser has been on multiple myeloma, there is another disease - amyloidosis - that is even less well known and understood along for the ride. The good news is that the treatments for amyloidosis are the same as those for multiple myeloma. As a result, raising funds for the Hematology Clinical Trials Unit at VGH will benefit those with blood cancers like multiple myeloma, leukemia and lymphoma as well as those with amyloidosis.

Hey, if you are still reading consider yourself a full-fledged student of myeloma and amyloidosis. Thanks for being there.

1 comment:

  1. Wow - way to go, Anneke, et.al.! Good news too about the approved 8 cycles of Velcade, Ed.