Tag Archives: Bendamustine

Bendamustine

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.

 

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Post Adcetris/Post Everolimus/Pre-SomethingElse

One step forward. Two steps back. Waiting. Waiting. A giant leap. A stumble here. Collapsing there. Getting back up. Moving forward.

Every new scan and every new treatment brings with it a mix of excitement, expectation, exasperation and frustration. And this week is no different.

My latest PET scan shows stable disease. My hot spots are about the same size and show about the same activity. I think. See, because of a dispute between Blue Shield and UCLA, I had to get my PET done at a different hospital. So, I had to get my doctor at City of Hope to take a look at my scan. And my doctor at UCLA doesn’t completely agree with my City of Hope doctor about his opinion of what to do next. With all of this in mind, we are meeting with Dr. Chen at City of Hope this Friday.

My current situation shapes up like this: Stable disease isn’t enough to get me into transplant. They want to see reduced disease. So I need more treatment.

I’ve been off any kind of treatment for about 3 weeks – I stopped the Everolimus because it was taking a toll on my platelet counts. And in the past two weeks, my platelets have been rising on their own. Last week they were as high as 55! (Normal platelet counts are around 140) My bone marrow biopsy doesn’t indicate any specific causes of the thrombocytopenia. It could just be bone marrow fatigue or side effects from the chemo. Hopefully, my platelets will continue to rise. The thrombocytopenia complicates matters because a low platelet count limits the amount of toxicity and treatment I can take.

Also, my bone marrow biopsy doesn’t show any signs of cancer – which is a very good sign.

However, my most troublesome symptom right now is my nagging cough. It could be a lymph node pressing against my airway. My x-rays, PET scan and check-ups don’t show any signs of pneumonia or infection. I’m taking some prednisone which seems to be keeping things in control – but I’m worried that the cough is a sign of some deeper problems lurking in the background.

The current plan is to get reduction in my disease while avoiding high levels of toxicity. The better shape I’m in heading into my allo transplant, the better my overall condition will be in the end.

My treatment choices seem to be:

  • Bendamustine – a chemo that can be pretty harsh but shows promise in treating Hodgkin’s Disease
  • Revlimid/Lenalidomide – I’m not sure how this drug works, but it is used to treat multiple myeloma and has shown promise for Hodgkins.
  • Rituximab – Is used along with other therapies to target the B-cells that have CD-20 proteins
  • ICE chemo – This is my “Kamikaze Treatment” that I’m keeping in my back pocket. ICE is a standard chemo for Hodgkins that I haven’t tried yet. All signs point to it working to put me in remission. But it has very, very high toxicity levels. If my disease goes into mega-drive, then I will consider ICE. But I’m avoiding it for now.
UCLA is leaning towards Revlimid/Rituximab. COH is leaning towards Bendamustine.
Most evenings, I lean towards a cold beer and a movie.
Are you starting to understand the whole “two steps forward/one step back” situation?
I am a work in progress. It is an extremely frustrating process punctuated by periods of fear. However, life goes on. I’m embracing my good days, resting on my bad days, and continuing to work towards the future.
For this post, I’ll let someone else take over the funny stuff.
Introducing: Woody Roseland and “Shit Cancer Patients Say”