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.
Me and Mr. Hodgkins 