Monthly Archives: July 2011

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.