Another milestone reached

This Tuesday I went to UCSD (Moore's Cancer Center) for my 6 month checkup for the Imbruvica trial.  This milestone is significant because I will now be able to get a 90 day supply of the drug instead of just 30 days.  It also means that I will now only have to see my doctors every 90 days.  I still go down there every month to get my IVIG infusion (to protect me against infections), but it will be less time because I won't have a doctor visit.  All my numbers are either staying stable or are moving in the right direction.  A physical exam  showed nothing remarkable.  No lymph nodes of any significance, and my spleen was undetectable.  All of this is really positive.  After 5 failed treatments, this one appears to doing the most good, with the fewest side effects.

No one is quite sure how long us 'lab rats' will be able to stay on the trial.  After it was officially approved by the FDA in February, there was some concern that all the trials would be ended.  But that hasn't happened and now the feeling is that they may still want to accrue long term data. 

One nice thing about this treatment is that I can finally do some planning.  We were able to spend a week in Sedona playing golf, sightseeing and visiting friends.  Having spent a lot of time there in years past, I can still say it is one of the most beautiful places on earth.  We are also leaving Friday for Seattle for our granddaughter's FIRST birthday party.   

Coming home from UCSD with my brown paper bag (yes, that's how I get the drugs) and $25,000 worth of unlabeled / unmarked drugs in my possession, I was hoping I didn't get pulled over at the immigration checkpoint asking me what I was smuggling into the country.

Along the way in this journey I have met many fellow CLL travelers, both in person and thru the Internet.  This week, we lost a long time traveler David Arenson.  He was trying to get ready for a transplant, but didn't make it.  He had battled some of the same issues that I have had over the years and his blog was one of the first ones that I hooked up with after I was diagnosed.  He was a great writer and storyteller.  His insight and wisdom will greatly be missed. 

His passing also makes me think about the nature of this disease.  Right now there is no cure.  Only a transplant will cure you and that only has a 50% chance of success, if you are under 65 and if you live through it.  We have a member of our CLL support group that had a transplant last Christmas and she is STILL in the hospital with complications.  I am grateful that the advances in treating this disease have been nothing short of amazing in the last 3 years.  None of these new therapies (which are all NON-chemo based were around when I was diagnosed in 2000.  These new therapies are giving people longer, durable remissions with manageable side effects.   If I had gone with traditional therapies and stayed with doctors that were not specialists in this disease I would not be here now.  Even though the path has not been easy, I feel blessed every day that this path was available to me.

Terry