6/3/15 – No News is Not Always Good News

Helene and I went to see Dr. G at Penn today.  We took the Myeloma numbers and will get them back within a few days but it really is too soon to tell if the Imbruvica is working just yet.

We really don’t have any answers at this time for my Cancer.  These plasmacytomas in my chest area are really hindering my breathing.  I now have a home oxygen machine which is feeding me oxygen through a tube in my nose.  I also have two traveling canisters of O2 which I can travel with.  Today, however, on the way to Philly I went through both of them and had no oxygen for the car ride home.

The trouble area for these plasmacytomas is that they decided to hang out on my lung.  If the Imbruvica doesn’t work in keeping them at bay or reducing them, we need to move onto another therapy.  There is one promising drug, Selinexor, which is in trial and also the T Cell therapy at NIH.  Helene, Dr. G and I are pushing hard on NIH to speed up their process but we are looking at July at the earliest.  If the Selinexor trial doesn’t work, we could go back to other therapies like Revlimid or Carfilzomib which I had good initial response to but how long would those drugs actually work if they do at all?

This really puts me between a rock and a hard place.  The plasmacytomas can’t be radiated because they are too spread out on the lung and the field is too big to treat.  If they grow and my breathing worsens, it could be bad news.  So, we will continue to measure the blood counts in the hopes of some good numbers and continue to watch the symptoms – breathing etc. – to find improvement.

It aint over yet!

19 responses to “6/3/15 – No News is Not Always Good News

  1. Dear Brad and Helene, keep fighting. You seem to be doing all the right things and pursuing the right docs. Persistence, persistence rules the day! Our thoughts and love are with you. Uncle Herb and Aunt Roberta

  2. They don’t call you Bradstrong for nothing! Keep fighting the demons and disease. You have a lot of people rooting for you.

  3. These struggles are the snapshots. The big picture of your life and your journey is vast, beautiful and full of love, strength and friendship. Let’s see what the next snapshot will bring. Oxox

  4. Hey Brad. It’s Andrew Brown. We swam with sea turtles together in Maui at our honeymoons. I want to send this note to let you know how much I admire you and Helene. You are an inspiration and a role model. Heather and I read all your posts and pray for you and your family. Keep up the fight as I know you will. There WILL be better days ahead as you continue along this extraordinary journey.

    Peace and Happiness,

    Andrew

    Sent with Good (www.good.com)

    ________________________________

  5. Thank you Brad for the update. I am praying for you. Richie

    Sent from my iPhone

  6. I know this can get discouraging and it must be frightening to be so short of breath, but stay strong. Hopefully the next medication will be THE medication. Praying for you as I always do. Judy

  7. Sending prayers your way! You are so inspirational Brad! Hoping you get some good news very soon.

  8. I admire your guts and resilience, the way you smash back against this thing. Wish you continued strength and positive results from the drugs.

  9. Stay strong, Brad. I may not ever comment, but I’ve been following you the whole time. Your strength and courage are awe-inspiring. Waiting to hear how you are going to beat this. My thoughts are with you and your family.

  10. I too don’t always comment but I look for your posts all the time. I’m sending you major healing karma and support for you and your whole family.

  11. My heart is breaking. Sending love & light to All of Brads family. He is a remarkable man. I am so sad to read this terrible news.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s