Brentuximab Vedotin... Try saying that 5 times fast.

The new chemo I am on is called Brentuximab vedotin.  Or simply Adcetris.  Your choice.  Definitely not as fun to say as lenalidomide, but I don't mind one bit as long as it works!

This drug was recently approved by the FDA in August and has great success rates with Hodgkin's patients like myself.  Yay for high success rates, boo for having to pay for it (the chemo pill I was on was not FDA approved yet so the drug company could not charge me while I was in a clinical trial serving as their guinea pig).  BV is to be used after all other recommended chemos and a stem cell transplant have failed - which are both true of me.

This drug is cooler than most chemos with how it exactly works.  Most chemos like to take over the whole entire body and while killing the cancer, so it also harms good blood cells, organs, etc.  BV is attracted specifically to my cancer cells causing them to die, not divide.  Although it's main focus are cancer cells, it will still kill off and lower my good blood counts, but not as drastic as my previous chemo pill.

As for side effects, I'm dealing with pretty much the same annoyances as I was with the pill.  But since they do not expect them to be as intense so hopefully I will feel a bit of relief!  The only new side effect that is being introduced is neuropathy (I didn't know what it meant either - it's numbness in my hands and feet).

So far I've been feeling the fatigue (but I don't know what it's like to not feel that) and inability to digest food properly.  I think that is causing the fatigue as well - within minutes to an hour after eating a meal my body decides it's time to get rid of it, leaving me feeling zero energy.  Tonight and last night I've had low grade fevers - nothing horrible to call the doc about, but my body is telling me that something is up!  I'm feeling kinda icky... wondering now if I'm coming down with another cold or infection.  Hope not!!

The one side effect that really caught my attention is hair loss.  When my resident was rattling off the side effects, she said, "You should not lose your hair..." and I immediately responded with, "SHOULD not?!".  Now, this is not common nor expected to occur, but the joke is that I always seem to fall into the minority when it comes to percentages - a true talent of my body.  There's no point in stressing about this possibility.  If it happens, it happens.  Being bald has it's advantages... but I also think I'm able to be so okay with this because it is doubtful to actually occur.   The most that is expected to occur - IF it even occurs - is just hair thinning. 

Because this drug only takes 30 minutes to be administered (as opposed to chemos that take hours and even days) and it is not as harmful on my veins, they are not on the port bandwagon.  I am VERY pleased to know they do not see the benefit of me having another surgery and a gross port poking out of my chest again!  I did express my concern though that I am VERY fortunate to still have great veins for a cancer patient - I have nurses and techs tell me this all the time.  They look good for being an 8 year veteran!  But this is also because I have always had chemo administered through a port, not my arm.  The more my arm is used, the more those veins become damaged and IVs become more painful.  I already have a good amount of scar tissue built up - and I'm not even 30.  If this drug does not work and we switch to something else, then they will put in a port for sure (hopefully this one works!!!).  But with BV we are going to wait out the first few treatments and see how it goes without a port.  Unfortunately I did not do so well when the first treatment was administered.  The nurses were unsure if either the fluid was really cold or if it leaked, but it was painful.  I could feel the pressure in my vein as it went up my arm and I could feel my arm swell up.  It hurt and I was uncomfortable during the whole entire process.  Let's hope it was just a fluke and next time will run much smoother.  Otherwise a port might be in my future sooner than later (if ever!). 

Last Wednesday was my first treatment marking it my first cycle of treatment.  I will have blood work, visit with my doc, and end with treatment every 3 weeks.  My first round of scans on this drug will occur at either the 6 or 9 week cycle - I will find out at my next appointment.


Overall my docs are very excited about this drug.  They are optimistic to see shrinking results immediately with the hope that it could possibly eliminate my tumors all together.  Unlike the lenalidomide, I cannot stay on this drug forever even if only stability occurs.  I'm actually limited to a year (haven't looked into why).  So lets hope for some major shrinking in the next 12 months!!

Medical News Today has a good article about Brentuximab vedotin if you are interested.