Patient’s patience

I had another dose of SGN-35 (Adcetris) last week and I’m going to have another PET scan end of next week (or thereabouts).

I decided to not go through with an immediate biopsy because the chance of getting a useable sample was very low and I felt the risk and discomfort was too high. The biopsy would have resulted in:

• Positive sample = more treatment
• Negative sample = we still couldn’t be sure that the sample is truly negative because of the small sample size so it would still be inconclusive
• Inconclusive sample = Inconclusive

With this in mind, my current course of action is to get another PET scan and see if the hotspots go away, stay the same or grow.

If my PET is clear, then it is onto my allo transplant.

Anything else and I’ll either definitely need to get a biopsy or I’ll have to get more chemo treatment to put me into complete remission.

The goal is still the same – allogeneic stem cell transplant.

But we now understand that going into the transplant as close to complete remission as possible is the best course of action. Even if it means more treatment. Even if it stresses us out.

The good news is that there still seem to be a number of chemotherapy treatment options to get me into remission.

One of the most promising options is a study being done at Baylor by Dr. Bollard. If my tumor shows signs of EBV (which is related to the T-cells and found in 50% of Hodgkin’s) then I might qualify for this treatment. We are getting blood and tumor samples tested now.

http://www.texaschildrens.org/carecenters/Cancer/perspectives/archives/spring06/Bollard.html

On a side note: I spent a few minutes this morning reading Hodgkin’s support group forums. I haven’t spent any time in the past looking at these websites as I know they are mostly filled with sad stories and people looking for comfort. Too many questions, not enough answers and too emotionally taxing for me. Jen takes on most/all of the research on herself – which means she also takes on the emotional burden of being aware of other people’s experiences.

However, after reading a few posts, I became even more inspired to keep fighting and develop a new plan – if I need one. Eat healthy. Stay active. Push for the most demanding treatments possible to knock this thing down so I can get into my allo transplant.

“History is written by the victors.” – attributed to Winston Churchill

Or, to put it another way: