After seeing how much traffic I got from my post yesterday, I realized that it was kind of unfair for me not to write at least a quick update on my treatment.

I just completed my 2nd round of Bendamustine chemotherapy at City of Hope. According to my last PET scan in January, I still have some active lymph nodes in my chest that need to be knocked down or eliminated before I can get into transplant. We are hoping the Bendy does the trick. If it isn’t working or not working enough, I still have a few other chemo options to try to get my disease as close to remission as possible. The other chemo regimens are harsher and more toxic than the Bendy, which is why we have been avoiding them. But they are readily available.

About a month ago the lower 2/3 of my right lung collapsed. Previous scans and x-rays showed that the lymph nodes were putting pressure on my lower bronchial tubes, but the doctors didn’t seem too concerned about it. I was having breathing problems for awhile (coughing, wheezing, shortness of breath), and the hope was that my chemo treatments would reduce the lymph nodes, which would relieve the pressure on my bronchial tubes, which would solve the breathing problems.

Ask me again why the doctors didn’t seem too worried about it? Well, there was really nothing that could be done and we had to see how the I dealt with the Bendamustine treatment.

Unfortunately, after my first round of Bendy in the beginning of March, there was some kind of inflammation/interaction/mucus build-up/complication and my lower lung got blocked and collapsed. I spent a few days in the hospital getting worked over and they took a look. But, at this stage, there is nothing the pulmonary doctors can do to get my lung re-opened.

The blockage is being caused by enlarged lymph nodes -> the chemo is supposed to reduce the size of the lymph nodes -> which will hopefully open up my airway.

That’s the plan. I’ve got another PET scan scheduled in a couple of weeks to see how things are progressing. And probably another bronchoscopy after that to take a look in my airways and see how things are holding up.

I mentioned yesterday that I’ve been pretty angry and frustrated… Without going into details, spending a week in the hospital and having my mobility limited due to my collapsed lung has taken a toll on me. And then add a shitty weekend of chemo on top of it all and that makes Stephen a frustrated boy. The past couple of days, I’ve been coming out of my chemo sickness but my shortness of breath and fatigue keep me pretty limited. I also have a constant and ridiculously annoying cough at all times.

So, I’m laying low. Conserving my energy. And holding out for the next round of scans and decisions.


9 responses to “Bendamustine

  1. Don’t know how you do it, man. Hope you do feel funny soon.

  2. my thoughts are with you! im so sorry that you have been having so many complications and set backs. be well soon and lots of love to you and that extraordinary wife of yours.

  3. Hey Steve, can appreciate the lung issues after finding out my entire lower right lobe was completely infiltrated with pneumonia. I’ve also dealt with my lung being completely filled with fluid from enlarged nodes preventing it from draining. Makes you appreciate the days when you could take a full breath in without coughing your ass off. I’m hoping the reason you haven’t gotten relief from the Bendo yet is because of inflammation. Wondering if the scar tissue is causing the nodes to swell even more and thus putting the pressure on your pipes. In any event, hoping for some relief of your symptoms and some much deserved peace of mind.

  4. Melinda and Dan Berry (plus Ethan, Dylan, Bryson and Ireland too!)


    Your family here in Florida are praying for you! Lots of love to you and Jen!!! xoxox

  5. Love you two

  6. Clare Kavanagh

    We’re with you Steve cheering you on through this latest round and looking forward to the day you & Jen can come see us in Dublin lotsa love Richie, Clare and Ruby Rose xxx

  7. Sending you and Jen warm thoughts and prayers. Your strength is unreal. And your courage is inspirational to so many my friend. Loving you from afar. Xoxo. Donna

  8. I don’t know what to say and what not to say but I will say that I found your blog through trying to find updates on Ethan Zohn. I’ve got your site bookmarked, read with interest and care, and wish you well, well, well…

  9. I too just finished round 2 of bendy. I am on oxygen 24 hrs due to breathing issues. I can relate to your frustrations! Stay strong –

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