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”

8 responses to “Post Adcetris/Post Everolimus/Pre-SomethingElse

  1. Heh, I love “Good thing you got on your hazmat suits to protect you from the stuff you’re giving me.”

    Well, I love you man.

  2. Hey Steve, chris carr here. Just read ur deal and wanted to throw some support your way. Sounds like quite the conundrum but glad to know you have choices. I don’t know how chemosensitive your disease is but if it were me, based on the mass amount of conventional chemo I’ve had and the relative lack of success with it, I’d probably try the Revlamid. I’ve known a couple of people who’ve tried it and I think it’s tolerated pretty well and would think less toxic (on the marrow) than the bendo. That sucks that your platelets weren’t cooperating with the Everolimus. The threshold for me at Karmanos is 25K and I’ve been down all the way to 33k when I first started. I’ve noticed though that my platelets levels have steadily resolved the last few months for some reason even without lowering the dose. Also, the longer I’ve been on it, the more my body has generally gotten used to it and subsequently, my disease burden has also been reduced. My doc says this is common (stable for a while then slowly seeing a response). I just remembered too that I did take a couple of weeks off when I first started and it seemed to help.

    I just wanted to share this with you as it seems like your platelet levels weren’t that bad (apologize if you’ve been below 25k, haven’t read that far back)

    All the best as you make your decision. Also, if you’ve been off tx for 3 weeks, you might as well wait another and submit blood to either Dr. Heslop or Bollard for their t-cell studies. Again, forgive me if for some reason you weren’t able to qualify for either of these. I remember discussing this with Jen on FB but can’t remember what the story was there.


  3. What grace to be able to make something so funny out of something that is so not funny. (and it was funny!) My heart goes out to you, and Woody (and all of those battling). I hope the next steps you take are leaps forward with no backtracking. Big squeezy hugs to you and Jen.

  4. I’m exhausted and all I did was read/watch this post! Don’t know how you do it, you two! Of course NOT doing it all doesn’t seem to be a menu choice…Love that you post this way to keep so many who care about you in the loop. Here’s hoping that some day the docs all agree on “where to go from here” and here’s hoping their answer some day will be “HOME…FOR GOOD”. God bless you both.

  5. Toni Youngblood

    The pure strength the two of you have is to be envied. Not the unfortunate situation you’re in of course but how you are handling it all. I love your spirit, courage, humor, and the unbreakable bond of love and friendship you two exude. I do hope that between all of the specialists at UCLA and City of Hope, as well as those blasted Blue Shield insurance reps, I hope and pray for a promising prognosis that allows you to get back to the business of living outside the hospital and enjoying life. Thinking of you both, wishing you peace and happiness.
    Take good care,
    Toni Youngblood

  6. Hi,
    I’ve just had my first cycle of Adcetris/Brentuximab seven days ago. I too am suffering from refractory HL. I just wanted to say that I too have a persistant cough. In my case it has always accompanied active disease. Any time I have had a chemo that works the cough disappears. I’ve coughed non-stop for the last two years and now seven days out from my first cycle it’s vertually gone.
    Anyway, keep strong! I’m sure we will both beat this in the end.
    Kind regards ..Ron

  7. Hi. My dear friend just started chemotherapy for her recently diagnosed Hodgkins lymphoma. I’ve been reading various blogs to learn more about the experience and figure out how I can help. I read your blog from the beginning to the present and I just want to tell you how impressed I am with your courage and honesty. You rock (and Jen does too) and I hope things get much easier from here on out.

  8. I stumbled onto your blog while searching for info on BEAM therapy. My son has had the ICE treatment and it didn’t make him very sick. He lost his hair (which he didn’t do with ABDV). He had a little kidney pain but with more fluids it went away.
    I wouldn’t be too afraid of it. Unfortunately it didn’t work for him but I hear it is usually the bomb for people. My son is starting stem cell collection shots on Friday for an autologous transplant.
    Thanks for all the info you have shared on your blog! Jane Griener

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