A Boring Report

I haven't posted for a while so I thought I would post a short update on what is going on.  The good news is that this drug, which goes by 3 names, PCI-32765, Ibrutinib, and finally Imbruvica, seems to be doing what it is supposed to do.  My counts are all moving in the right direction and my side effects have been minimal.  I can't say that they are non-existent, but they do seem to be manageable, and also transient.  They seem to come and go, but mostly they come and then disappear. I have monthly visits until April and then I go to every 3 months. 

The drug is made by a company called Pharmacyclics, but because they needed funding, they partnered with Jannsen, (who is actually owned by Johnson & Johnson).  In November the FDA approved Imbruvica for Mantle Cell Lymphoma, but for some reason held back the approval for CLL.  The thinking was that they were waiting for some Clinical Trial data that would be finalized in February.  If everything goes according to plan, it should be officially approved in February for CLL.

As some of you remember, I am getting monthly infusions at Moore's Cancer Center of IV immunoglobulins, or IVIG.  I have been doing this every month since November of 2007.  Since I have a compromised immune system, this monthly infusion helps protect me against common infections.  I was recently told that in the near future Medicare will no longer pay for Medical Center infused IVIG.  It will have to be self administered at home.  The problem is that at home you can't infuse it as fast, so you have to have WEEKLY infusions that last 2 hours.  I wonder how long it will be before we have to perform open heart surgery on ourselves?

We continue to make plans (now that we can) and we will be traveling quite a bit in the next 4 months.

Boring is good!

01/30/08 – Some New Info

There really has been no change on the medical front for me, but I did want to update a couple of things. First of all my Dad is slowly improving every day. He has now begun eating SMALL amounts of food. He still has the feeding tube in his stomach, but he passed his swallow test (relearning to swallow after the tracheotomy), and now there will be a slow transition to real food. He is also slowly regaining his physical strength. It is a slow process, but everything is moving forward a step at a time. He has begun taking short walks (inside his home) using a cane. He has also sat at his organ, and is able to play for a short while. Secondly, my father-in-law Don, celebrated his 90^th birthday last week. Not one to be sitting around, he played golf on his birthday (one of three times that week), and then went to a GYRO meeting that night. We had a family dinner for him on Sunday night, and it was a fine celebration.

I did go to La Jolla this week for my monthly IVIG infusion, and that was uneventful. However, as part of that procedure, they do a routine series of blood tests. One thing of note was that my White Count has risen slightly from about 9 to about 17. This was not totally unexpected, and I will know more when I see the doctor the first week of March. It was not a big enough concern to contact the doctor, so that is a good thing. My Red Count and my Platelets remain well within normal ranges so it looks like the anemia is still under control. Otherwise, I am feeling quite well. Beginning New Year's Eve I had a major cold which lasted about three plus weeks, but luckily it did not turn into anything major, like pneumonia. Unfortunately it happened right in the middle of a planned trip to Seattle, to see my Dad, so we had to reschedule until February.

Lastly, I have added a couple of new functions to my blog to make it more automated and user friendly. I have added a link on my blog that will add your email address to a website that will automatically send you an email when my blog gets updated. It is pretty easy to use, you just put in your email, and click SUBSCRIBE, then an email will be sent to you asking you to confirm that you want to receive an email alert whenever the blog changes. Respond to the email by putting the link sent to you in a browser. That is all there is to it. If you sign up this way the update emails will no longer come from my AOL mail, but from my Google mail ID, which is terrymevans@gmail.com . This is because my Blog is in the Google Blog Application called Blogspot. The main problem with this method of notifications is that whenever I change ANYTHING, a picture, a misspelling, publishing a comment, a notice will be sent saying the blog has been updated. While technically correct, it can also mean that I found a spelling error and corrected it. I will continue to send out my AOL mail updates until people tell me that have signed up for and like the other method. If all of this is too confusing, don't worry about it, and I will keep sending out emails the old way.

The last thing I have added is a link to translate my blog into Italian. Sometimes it may be easier for my non English speaking friends to read my site if it gets translated.

All for now,

Terry