Time to share some good news

Progress progress progress.

I’m getting my 5th infusion of SGN-35 this Friday. It gets a little harder each time, but the side effects are not nearly as harsh as my previous chemo regimens. Some nausea. Some sleepless nights. A lot of fatigue. My arms and legs sometimes shake and tremble (which isn’t uncommon on this drug). I’ve been having some pain and neuropathy down my right arm and right side – which is the most expected side effect of the drug. On some days I’m wiped out. But most of the time I’m pretty functional. Re-reading this sounds like the words of a true cancer veteran…

What is particularly interesting is that I can feel the drug working. I can feel activity in my chest. Actually, my SVC symptoms cleared up after my first infusion, so I knew something was going on in there.

My latest PET scan showed very, very little activity. This means the SGN is doing its job. The doc won’t say the word ‘remission’ but the results are good enough that we can move on to the next step – allogenic stem cell transplant. I have another PET scan in mid-August and if that is clear, we can go full steam ahead.

Thank you, SGN. I look forward to the day when you are available for all the Hodgkin’s patients out there.

Stem cell transplant. As you may remember, this is where things get interesting again.

Firstly, the great news is that my brother is a match for my transplant. There was a lot of worry about having to find an unrelated donor. And the process for getting him tested and finding out the results have dragged on a little longer than expected. But in the end, it is the best result possible – 100% related donor.

In my brother’s own words: He’s finally useful for something other than raising people’s auto insurance.

Also, it looks like I’m going to be able to have my transplant at UCLA. Their policy is usually not to allow someone to have multiple stem cell transplants in the same year. But they talked through my situation and agreed that it will be fine. I think this proves that a person should always fight for their health care – even when one doctor says no, someone else could say yes. And a caring doctor will listen to your concerns and consider your needs. There is no ‘one way’ of doing things when it comes to cancer treatment. Even when it is Hodgkin’s and the plan is mostly predetermined.

We can’t make definite plans until after my next PET scan. My brother has to fly here from Berlin. We have to time everything just so. I’m confident things will fall into place in its own time.

I was also told that the chemo before my transplant won’t be as debilitating as last year. With an autologous transplant, they gave me enough chemo to completely destroy my immune system. This time, they only need to give me enough chemo to weaken my immune system enough so as to allow my brother’s stem cells to take hold. Also, I’m told that giving me that level of chemo could be devastating – it could make my immune system so weak that I might not recover. And that’s not what we’re going for.

However, the potential complications of an allogenic transplant are greater than autologous transplant. Although I may not be as knocked down from the chemo, I’ll still have to deal with the host v. graft disease. I’ll get more into that at a later date.

So, I’m headed in the right direction with this 3rd round of treatment. It has been mostly good news since I started the SGN-35 treatments. I’m happy. But not too happy – there is still a lot of difficult work ahead.

Allow me to briefly acknowledge that I don’t give out updates on my blog as much as I used to.

Since SGN hasn’t been as rough as my past chemotherapy, I’ve been able to focus more on being productive with the rest of my life. I took a 4 week summer class at Pepperdine. Jen and I are making some changes in our lives. I traveled to a seminar in Monterey Bay. And, as I write this, I’m on a health retreat north of Vancouver Canada.

As I mentioned before, writing this blog can be very difficult at times. I know it provides valuable information and insight to other Hodgkin’s patients. But at the same time, it can be quite an emotional drain for me to review my procedures and share my thoughts.

As I move forward, I can’t promise I’ll write more or less. But know that I’m in a good place.

Progress progress progress.

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13 responses to “Time to share some good news

  1. A “cautious” congratulations, bro-in-law. Here’s for prayers for your strengthening immune system and that you can eat nutritiously and enjoy what you can while your immune system is down a bit. Hope you enjoy the event/camp you are at. We’re thinking of you.

  2. alice williams

    You are a brave individual. I hope and pray that it will all work out. I have family members that have died from Cancer and I hope that your body and mind overcomes. God bless.

  3. Retreat! Retreat! Thats what we say to the cancer!
    Glad to hear that you are enjoying your FUN retreat!
    Love to the Dickberries!

  4. Krys De Scribner

    Thanks so much for the update. Since you have entered my life via this blog, you have been in my conversations with God! I adore your wife and pray that you both have many many happy healthy years together when this cancer is behind you and you are on the other road in life! You truly are an inspiration to others… with or without Cancer!! Thanks for taking the time to update!!

  5. Jose and Laney Vivo

    Progress Progress Progress, thanks for sharing with us Steve. We think of you often and our hearts are smiling with the thought of the future and what it will bring in the form of good news! Enjoy your retreat, you deserve it! Lots of love to you and Jen – The Vivo’s xo

  6. I wish you the very very best and after all this is done a healthy and happy life for you and Jen.
    XO

  7. Where, and how far north of my fair city are you (Vancouver) Steve? Maybe I can come and see you? I wish you and Jen all incredible things. Jane xo

  8. A toast to you my friend, not only for your courage with this journey, but for even taking the time to write. I admire you, and wish you the very best.
    You and Jen sure know how to set the bar!!
    Dana
    xo

  9. Sleepless nights and restlessness is good for Fantasy Football research time. But maybe it’s better to have a crappy team and luck into the championship instead of having the best fantasy team ever assembled.

  10. Even though it is not your favorite thing to blog, I gotta say you are damned good at it! It is good to “hear” from you again and to know that you are actually getting to do some fun “Steve” things!!! Very cool. Watched the Rockies get pummeled by the Dodgers last night and remembered the game that Gary, you , Tom, Daveen and I went to… long ago. As always, prayers and loads and loads of good thoughts coming to you and Jen from Tom and me.

  11. S, Looks like great news. I’m thinking about you. Stay strong. I’ll see you when I get to LA for my next check up R

  12. I am very happy to hear your brother a perfect match. Must have been such a relief knowing you have a close family member who can be the donor.
    It must make him happy to be able to give to you.
    Maybe best not to lend him your car though.
    I am thinking of you Dickberries with much love in my heart. xo

  13. Steve, I am so happy that you guys are getting some news which can take some of the worries away. Your brother being a match is awesome!
    Love you guys.
    Also I really appreciate the update.
    xoxo

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