Another Relapse

I’ve been trying for some time to write a post though I’m having a hard time finding the energy. I just want to bring everything up-to-date.

A little over three weeks ago I began experiencing bone-pain in my left collar bone. It was not as sudden or intolerable as my previous relapse so I went to see my doctor on a Monday hoping to find another explanation for the pain. My doctor immediately stopped my participation in the drug trial (which had seemed like a miracle cure for my cancer) and told me to come back in if things got any worse. They took some blood and said they’d let me know if anything came up.

Tuesday the pain remained and I just went to work. I wanted to believe (again) it would go away and just wanted to go to work and have my life. After work that day watching TV with a friend it was obvious that the pain was only getting worse. That night I packed up my things and my family gave me a ride into the Emergency Department.

I don’t remember what the numbers were but there was a significant cancer presence in my marrow again. As magical as the Ponatinib had seemed, at least one of the mutations of my cancer was not treated by it and after about 3 months of some of the best health I’ve had since I was diagnosed – I began chemotherapy again.

Before getting into the drug trial, my previous oncologist had told me back in December that I didn’t have any more treatment options to pursue and I should look into hospice care. I’m across the street from my old hospital now (I swear, you can almost see the building from this hospital) and with a new oncologist who presented me with a chemotherapy option. It still blows my mind that simply talking to a different doctor and your treatment options can change drastically.

Admittedly the chemotherapy I started three weeks ago (from what I can tell) is not widely used. Cytarabine is a very common chemotherapy agent, I believe it was part of my induction therapy when I first got sick. Whats non-standard about this treatment is the extremely high dose I received – and it was every 12 hours. This was also combined with another drug which I just can’t seem to remember right now. Therapy this intense is typically only used for patients who don’t have other options at their disposal. Reading some of the published studies on high-dose ARC shows that more often than other treatments patients actually die from the intensity of the treatment.

Again, a patient most likely doesn’t enter into a regimen like this unless they’re critically ill and have already undergone many other failed treatments. I suppose thats an accurate description of my position. My doctor is pinning his hopes on the chance that this earth-shattering chemotherapy is what my body needs to finally push this cancer into remission and keep it there. The reality is if this chemotherapy does any less than cure me, I don’t have much in the way of treatment options left.

I’m still recovering in the hospital and in another week or two (assuming my counts recover, which is taking a notably long time) my doctors will take a bone marrow biopsy and we’ll be able to see how effective the chemotherapy has been. If the cancer is still present or comes back, the only other option is a second bone marrow transplant from a new donor. Aside from the difficulties in finding a donor, the first transplant I had was the worst experience of my life and physically traumatic in ways I can’t even describe. Given I already have two sets of DNA coursing through my immune system, adding a third only increases the risks and severity of side-effects. It would be a uniquely painful way to die. Never mind the success rates for patients on their second transplant are dismal.

In short – I’m not in great spirits. As always with this disease I don’t know any more than anyone else about whether or not this chemotherapy will work. It’s certainly helped others so theres a chance I could be among the lucky ones. But outside of hoping theres not much more I can do. A second transplant doesn’t seem like a viable option to me. I don’t want to die in a hospital. Completely physically shattered and dreading every day I’m awake until I get an infection that kills me. Just going through chemotherapy this time (and 5 days of constant fevers from a gut infection) I was driven to tears more than once. I’d much rather die at home with a modicum of comfort and with the people I love.

It’s been something like 15 months I’ve been in treatment and I’ve had more than one occasion where I really thought I’d beaten it. I’ve had the benefit of some of the best hospitals and treatments in the world and access to drugs that ordinarily would be out of a persons reach. I’ve fought hard and come very close but in the end I’m not sure this is a war I’m going to win.

- Austin

    • Meredith O’Neill
    • April 16th, 2011 4:57pm

    Dear Austin,

    Thank you for sharing your moving story with the world. I work with your friend Doug at City Market in Burlington, and heard about your blog through his Facebook post. This blog is a testament to your bravery which is truly inspirational. Leukemia took my daughter’s best friend when she was only 22, so I am aware of the horror of this disease. I wish you courage and strength to face the challenges ahead, just as you have braved those before. I pray for a miracle for you and in the meantime, be well. The world is sending you their hopes and prayers.


    • s.k.
    • July 7th, 2011 2:27am

    Hi, Austin your story is exactly like my close friends. He has ALL leukemia currently and everything you mention he is going through right now. He relapsed for the third time last month since 2008. He underwent 2 transplants so far and his last chemotherapy he was given did not work last month and the doctors gave him no chance to live and sent him home on hospice care. All the pain and thoughts that you have wrote remind me of what my friend went through in the past and currently. The doctors gave him no hope, but I dont want to give up on him. If there is anyway you would be able to email me and we can communicate that would be great I would love to hear more about your story.

  1. hi austin im so sorry but my inglish is no good but a feel seem like you because i hve my third relapse and my doctor dont gave a hope to pass throu this i have 40 years old and i donn even have a bone marrow transplant because i nevere got the remision they trait whit me a new drug is a trial it works in many patientes the name is blinatumomab ask your doctor about it it didnt work for me i receive that drug a few days and gave me the chance to do many things i didnt because the kimo make me feel so tired and weak now a think a have no hope but a trait to mi confidence in jehova god is de only one who can help us please pray a lot

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