Living Well with a Bad Diagnosis - Lung Disease

Wednesday, October 12, 2016

Drug Trials

It was a bit odd to look around the room at the ILD Support Group meeting and realize that Lena and I were the only original members. I know there were others not in attendance but I learned from Lena that there are only a few of us left. As I said to her, "Only the good die young and here we are!" We bonded again.

The presenter had not adjusted to her audience. She had a quiet little voice and presented everything in a monotone with no excitement, just the facts. The dull facts. The room was warm and we all began to get sleepy. Thankfully Sally, who is head of the group, was able to fill in with fun information about certain trials and drugs and she made it interesting. She woke us up.

For full information, go to www.clinicaltrials.gov   A wealth of information.

Several things stood out: Beginning in January, there will be a drug trial of the two new anti-fibrotic drugs recently approved only for patients with IPF that will be studying their affects on those of us with other ILDs. If you have an ILD other than IPF, you may want to talk with your doctor about participating in this trial.

The other rather exciting trial in Phase II right now is, I think, GBT - 440. It is a pill to increase oxygen in the blood. Wouldn't that be amazing? Not having to haul supplemental oxygen everywhere.  Just take a pill? I would love to be in that trial!

Wish I had more but it was very difficult to hear. I did have a fun rehearsal of the Irish Fiddling group before I fell into bed. The day had begun with a 2+ mile walk along the ocean bluffs, a run through Safeway and a long drive into the city for the meeting. After watching the SF Giants lose, I fell into sleep exhausted from the day.

Today? We are taking a drive down the coast to Carmel-By-the-Sea then I might have the energy to go to the orchestra rehearsal tonight.

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