Keep On Blogging

After my last post, I have received several comments encouraging me to keep updating my blog and keep people informed of my progress.  It's very gratifying for me to hear from people I don't know saying that they find my blog informative and/or interesting.  That gives me renewed energy to keep steady on this course for the time being.

The stories that I hear from other MM patients are very poignant.  Some are too young to have to endure this disease.  Others have been fighting it for years, only to have it rear its ugly head again.  Even those of us who have achieved remission for the time being are just waiting for the Sword of Damocles to fall and the inevitable relapse to occur.  None of us is very far removed from the next blood test which may tell us that the disease is back.  And for those who have relapsed, they are searching for new ways to halt the spread of this pernicious disease.

For those of us who have achieved CR or better after initial chemotherapy and perhaps a stem cell transplant as well, the question of how to proceed with maintenance therapy becomes an issue.  I am participating in a clinical trial in which I am scheduled to receive Revlimid maintenance therapy for the next three years.  Dr. Richardson is a staunch believer in this approach.  However, there are many oncologists and patients who dispute this treatment method.

Revlimid does have some serious potential side effects, one of which is the risk of blood clots, or deep vein thrombosis (DVT), which can result in pulmonary embolisms.   That is why I am taking aspirin daily.  It is also known that Revlimid increases the risk of developing secondary cancers, as if MM isn't bad enough.  One of the biggest concerns, however, is that continued use of Revlimid over a long period may cause one to become refractory, rendering it ineffective once relapse occurs.  What then?  There are also other side effects of Revlimid, such as lowered white blood cell counts, low neutrophils, and low platelets, which increase the risk of infections, especially as flu season commences (I did get my flu shot last week).

I go back into DFCI next Monday for my monthly blood test and Zometa infusion.  After this next month of 10mg/day of Revlimid, Dr. Richardson plans to up the dose to 15 mg.  I have every intention of continuing with this clinical trial of Revlimid maintenance, especially since I have the high-risk t(4;14) chromosome abnormality, which seems to respond to Revlimid.  However, I plan to carefully monitor the dosage amounts.  So far, I seem to be tolerating 10 mg pretty well, but I'm nervous about upping the dose to 15 mg.  Nurse Mary McKenney said that Dr. Richardson likes to keep it at 15 mg even if the white blood cell and neutrophil counts drop by injecting Neupogen to boost them back up.  I don't like that idea.  I'd rather reduce the dose so I don't have to artificially increase my neutrophil count.  I have a feeling that Dr. Richardson and I may be heading for a heart-to-heart talk one of these days soon.   Want to take any bets as to who will win?