Round 3


I guess it is best to start back at the beginning of the middle.

About 3 months ago I got sick. Doctors thought it was a virus. I felt better after a few days but I was left with a lingering cough. After a couple of weeks of that, I started to get nervous. I followed up with a respiratory doctor who said my lungs were in good shape and it was probably an irritation in my trachea or somewhere so he gave me some asthma medicine. The theory was to treat the simple, obvious stuff first before worrying about the more complicated stuff.

The asthma medication didn’t help. As it didn’t 2 years ago and 1 year ago.

I started to feel pressure building in my head, puffiness behind my eyes and chest pain. I went to see my interventional radiologist (my homeboy, Dr. Loh) and he booked me a CT scan. This was about 5 weeks ago.

The CT scan showed that the tumor had grown a little since February and was pinching my vena cava between my stent and my heart. This didn’t come as much of a surprise to me as I was feeling the SVC symptoms, but I still held out hope that somehow it was scar tissue or some such. A PET scan soon after confirmed the hot spot. And here we are.

Apparently, the BEAM chemo and autologous stem cell treatment didn’t stick. The problem seems to be that the size of my mass (referred to as a ‘bulky mass’) can hide all sorts of rogue cells. Difficult to get them all. And not uncommon for a case like mine to not get taken care of with the ABVD and even with the more intense BEAM chemo and stem cell transplant.

After consulting various doctors – both in person and online – we followed up with Dr. Robert Chen at the City of Hope. COH has access to a drug called SGN-35 (or Brentuximab Vedotin). This drug is on the verge of FDA approval so I can get access to the drug through an expanded access trial.

Dr. Chen and his team jumped into action and I was approved for the drug within a week. I had my first infusion on May 5th. The drug is a type of chemo that targets CD30 cells, a defining marker of Hodgkin’s Lymphoma. This means that the drug is much more targeted than traditional chemo. This helps its effectiveness and also reduces the side effects.

I felt pretty crappy for a few days after getting the infusion – fatigue, slight nausea, lack of appetite. Typical chemo stuff but pretty mild considering what I’ve been through. And I was mostly back on my feet 4 days later. In addition to lighter side effects, I only get an infusion every 3 weeks which means I have lots of ‘normal time’ in between infusions. And I won’t have any long stays in the hospital for each infusion – I’m in-and-out in a few hours.

And, I can tell you with confidence, that it is working. The swelling in my head has gone down completely. My cough has completely disappeared. I don’t get dizzy when I bend over (as much). At the very least, the tumor around my SVC has receded allowing me some relief. My hope is that SGN-35 destroys the tumor – really beats the shit out of it – and it gets as small as possible. COH will give me a PET scan after my 2nd or 3rd infusion.

Now, SGN-35 isn’t a cure. I will need an allogeneic stem cell transplant when I hit full remission. This is similar to the stem cell transplant I had in November, except this time I will be getting someone else’s stem cells (hopefully, my brother if he is a match). The theory is that my immune system can’t fight off the Hodgkin’s Disease so hopefully someone else’s immune system can keep it at bay. I’m not looking forward to another month in the hospital and all of the additional complications that come along with an allogeneic stem cell transplant…but let’s worry about one thing at a time.

On a more personal note, I can’t tell you how difficult it has been for me to open up WordPress and have to continue writing about my experiences with cancer. It fucking sucks. And I’ve been putting it off for quite awhile.

Some people asked me about a month ago if I was going to ‘wrap up’ my blog in some way (this was before I knew for sure that I still had cancer). Other people have asked me to keep blogging because I’m a good writer (which is flattering).

I’ve said this before – this blog is a weight around my neck. It represents everything that has gone wrong with my life in the past couple of years. I look back on the early posts – so carefree and witty, so confident that Hodgkin’s Disease was going to be a footnote in my life – not the condition which would define my 30’s. And I can see myself slowly, over time, growing up and growing into being a long term cancer patient.

So, why write an update today?

I got a message last night from Ben and a comment today from Lisa.

I have no idea who these people are (although I’ll get to know them soon enough). Lisa is on prednisone – I assume she also has Hodgkin’s Disease. Ben is on his way to a stem cell transplant of his own in England. They both thanked me for writing the blog. As have others in the past few months.

To both of you – and to Karin and to Jess and all the others – I say: You’re not alone.

It took me months to figure that out. I’m still figuring it out. If these few words about my experiences can offer some insight, some education, some helpful links…then it is worth it.

If stories about constipation, being called “Stephanie” 3 times in one day at your new hospital, fighting with pharmacies, finding inspiration and strength and some kernals of wisdom about how to keep fighting are of interest to you – then feel free to continue to lurk around this blog.

Someone pointed out to me that I used to write on the blog as an emotional outlet. I don’t really need to do that anymore. Somehow, sometimes, I’ve come to accept cancer into my life. I still struggle, but my struggles have evolved. Call it one part resignation, one part humor, and a big dash of “getting on with it”.

I’ll write soon about changes we are making in my nutrition to help support my immune system and my weakness for blueberry muffins.


19 responses to “Round 3

  1. Thanks for the update, Steve. I think you have a great attitude under the circumstances. Will be listening in and praying. We love you, man.

  2. I 100% echo Digibrill’s comments.
    The road is long, but are MANY friends on that road with you.
    I appreciate your update and your willingness to share.

  3. Some very potent Kung Fu Chi coming your way…! Thank you for the update Steve, glad to hear that SGN-35 is doing its job. ❤ ❤ ❤

  4. Sorry to hear about the set-back. Keep up the good fight!

  5. Krys De Scribner

    I would like to say that it saddened me to see you are blogging about round 3!!! I have followed your blog from the beginning and in some horribly weird way…. enjoy it. Not the cancer part but the humor, extraordinary writing style and your outlook on life and your illness!! You have been in my prayers and continue to be!! Please tell your wife that I pray for her too and that Krys De Benson says “HI!!” Also, I love the nickname “Dickberry!!” :0)

  6. Sorry to hear about round 3. I think of you often and send all my good thoughts your way.

  7. Sending you all good thoughts my friend. In round three I look forward to hearing about the knockout punch!

  8. Fred Eisenlohr

    I say something occasionally on your blog . Hoping this will all just magically go away… And it hasn’t. Waiting for Jen to post something on facebook that you have fully recovered and all is well. She hasn’t. I keep waiting , but not wanting to see…..Not wanting to see, yet again that the concept of fair is anything but ” fair”. So, cancer ….What do you think about the idea of fair ?
    …….Never mind . Don’t answer that.
    Still my inspiration Steve , and I know nothing what you are truly facing each and every moment. Whatever I can give , whatever I can do ……I feel so lost here

    This stinks.
    Please, please, please let us know if there is anything we can do to boost your spirits, feed your belly, or help fight your fight. Much love.

  10. Steve: Was glad to read your blog sent to me by SteveK, a friend of yours and cousin of mine. I was diagnosed with a melanoma of the lung and have undergone 6 treatments. Holding up Ok but I know somewhat of what you are going thru. My sincere best wishes for a healthy recovery and a good and long life ahead. Keep that positive attitude… and my thoughts are with you.

  11. Hi Steve
    I am so sorry to hear of your relapse. My 17 year old son Jordan is also fighting this awful awful disease and I have been so bouyed by your beautiful writings. Jordan is/was/is a swimmer & surflifesaver in Australia and had ABVD and “remission “(whatever that means) for 8 months. He then had various cocktails of chemo (ICE IGEV and revlimid) with no success. He has now had 3 rounds of Brentuximab SGN30 with fantastic results !!! He goes in for BMT on 14th June (Auto). Anyway, just wanted you to feel the hope again. You can do it. You have people like us all over the world willing you on so .. go you good thing! x Jenny and Jordan Gold Coast Qld Australia

  12. You amaze me all the time. I hope SGN-35 continues to be as “easy” on you as it can be and as hard on the lymphoma as absolutely possible. And I have to say, I’ve been laughing out loud to myself at you being called “Stephanie” on several instances – not at you, with you :). I can just completely relate to those types of things and love the way you include those little nuggets in your fantastic writings. What a hilarious treatment world it can be at times. All my love to you and Jen always.

  13. Joanna Pound (Jojo)

    I am so saddened to hear about this. Please know that you are inspiration in my life and helped me get through our stay at ucla. I check your blog and Karin Diamond’s everyday. I may not be a good writer, but I have a huge a heart filled with love and prayers for your complete healing. You will get through this! Stay strong!
    Stay positive! F*** Cancer!!!! You are my hero!
    We are praying for you!!!
    Jojo and John

  14. I found your blog while searching for information on Dr. Jay Lee (UCLA Thoracic). Although I am 63 and was diagnosed in March 2011 with stage 4 nsclc (squamous), I found many of your experiences to be informative and helpful; especially as I am being treated by doctors who are part of UCLA’s lung cancer center. Your writing also offers great honesty and insight in dealing with your disease at such a early time in your life. I wish you success in your Brentuximab treatment.

  15. Anne Cunningham

    Hi Steve,
    Will be following your blog. My son had SCT late November last year and has been in and out of hospital since with infections. We were told about a month ago that the transplant had failed. Luckily we just found out yesterday that SGN 35 has been approved for him on compassionate grounds and he will start this next week. (we are in UK). It will be the first time his hospital has treated a patient with this drug. He was diagnosed in Jan 2010, had ABVD but has never gone into complete remission.
    Good luck with the treatment. And keep writing. It really does help others.

  16. my daughter is just 16 and has now started brentuximab after her 3rd relapse in January this year – life is an absolute bitch and so unfair but she is an inspiration – good luck everyone x

  17. Hi Steve!!
    I´m Ainara from Spain. I really appreciate your efforts writting this blog even knowing this could be hard for you sometimes… but for other patients this is an incredible “light on the other side of the tunnel”
    I know that this is an old post and you have no more this kind of dilemma, and you are still writing, but I´ll give you another reason to keep on writing. And that´s my friend Hugo.
    I write you because Hugo is now dealing with doctors about the best treatment on his Hodgking linfoma. After 2 relapses, the chemo is no longer working for him and the doctors told him that they could try with the anti-cd30… or sgn-35
    I know this is not a big deal in EEUU, but in the hospital he´s in they´ve never used this medicine, and even in Spain there´s only 5 people or so with this treatment. So Hugo is now trying to come over the bad news and we´re trying to help him finding people like you that are fighting hard and winning the battle.

    So when I´ve found your blog you can imagine it´s been a great pleasure to know that this medicine works, that you are getting better and I hope some day my friend will be also as well as you are even the road is not finished yet for you also.

    Hugo dosen´t speaks english, (and dosen´t know yet I´m writing you…uuuups) But I know he´ll want to be in touch with you as soon as I tell him your history. So maybe I´ll write you again.
    Hope you don´t mind.

    keep on fighting…

    (…and I´m sure you´re a Hero!! No doubt at all!!)


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