I haven’t written in a while, but there hasn’t been much to share–until recently. For those of you who have been following along, you know the spleen plays a big freaking role in this cancer. Here’s a little refresher:

People with Myelofibrosis have a bone marrow problem. Bone marrow is where blood cells are primarily made. When the bone marrow can’t make enough normal cells, the spleen helps out by starting to produce them (and it doesn’t make healthy blood cells either). This causes the spleen to grow larger.

When R initially got his diagnosis, his spleen measured 24 cm. 12 cm is “normal.” With medication, it shrunk to 18 cm–still too big but better. He regained his appetite and felt much less pressure in his abdomen.

In the past three months or so, his spleen has grown again. We don’t have an official measurement but R’s abdomen is further distended, he feels fuller faster and the pressure is back.

This means the spleen is working overtime to produce cells because the bone marrow is not producing enough normal blood cells. They don’t want to remove the spleen (splenectomy) because of the increased chance of infection for patients with Myelofibrosis, and infections can be deadly.

And they prefer not to do the bone marrow transplant when the spleen is large because it absorbs (sucks up, steals) the new donor cells, thereby defeating the purpose of the transplant.

Given the resurgence of the damn spleen, the doctor asked R to consider entering another drug trial. The last one didn’t help, and in fact, made his condition worse.

So, he’ll start the trial in another few weeks. It’s called a BET-inhibitor. The hope is it will decrease the growth of cancer cells. It won’t involve monthly infusions like the last one–he’ll take pills instead, but it will involve a lot more tests: multiple bone marrow biopsies, EKGs, MRIs, and lots of blood draws.

I’ll post here again when we know the results of the tests he’s about to undergo. The busy hospital schedule could very well get in the way of winter skiing which he loves so much, but he’s only gone once this winter. He’s been sick with some nasty cold/cough for a while. He’s never had the most robust immune system, but now he gets sick more frequently than ever. His immune system is compromised from the cancer.

BUT…he’s a trooper. Never complains, but there’s a dark cloud following us around, waiting for the other shoe to drop.

We’ve got supportive family and friends, and time with them means the world.