I know it has been a while since I last posted and some of you may have wondered where I have gone. Well, I am still here and even though I started to write updates many times, every time I thought to do it, things changed. So, I thought that when something ACTIONABLE actually happens, I will post.
Which brings me to today.
Some of you may remember that I started on a new drug in July of
2024. It was working really well until
January 2025. Because they run very
sophisticated tests on me due to my history and number of treatments, this
relapse was detected much earlier than it would have been under normal
circumstances. So then began the
planning of what to do next. Because the
relapse was moving slowly, I could take my time and look at all the available
options, which in my case are only clinical trials. I decided on a new class of drug that was
being tested by two different companies.
The funny thing was that I had actually done some work as a patient
advocate for BOTH of these companies.
One trial was at City of Hope in Irvine and was being run by one of the
CLL doctors I have previously seen. The
other trial was being run by my doctor of 13 years at UCSD in La Jolla. I could have gone either way, but leaned
towards the one at City of Hope because it was a much closer drive and I had
had personal contact with the President/CEO, the Chief Medical Officer and the Patient
Liaison of the company. In February I
reached out to City of Hope and asked them about their trial. They informed me that it would not open until
June or July, so since I was relapsing slowly, I thought it would be fine
waiting. At the end of May I reached out
again and they scheduled me for an appointment and then in the beginning of July found out after the fact
that there were NO slots for my particular class of CLL and types of treatment
that I have had. They also told me they
are not sure when they might actually have an opening in the trial that fits my
profile.
So, in July I had to turn to option 2. I go back to Dr. Choi and ask him if there are still any openings on the trial he is running which he had previously offered me 4 months earlier. Luckily for me he said there were openings.
But because of
the amount of testing and the number of tests required in the beginning we
decided to delay starting until after we got back from our trip to Ireland on
October 1st. My doctor and I weighed the pros and cons of
us going, and we agreed that we should go.
I’m really glad we did because it was one of our best trips. We actually went with Donna’s brother and
sister, which made it a special family trip as well. If you haven’t gone to Ireland I would
definitely consider it.
I am also grateful for companies like Lilly that have decided to produce drugs in the CLL space. Even though I relapsed while on it, I got 26 months remission, and without it, I am not sure I would be here today because there were very few options available to me back in 2024.
Also in March of this year we took a Viking river trip from Amsterdam to Switzerland with our friends Rick and Cindy. River cruising is so much more relaxing than a big cruise ship. Fewer people, great food and friendly staff. Even though it was still pretty cool we saw some beautiful sites and wound up with bright sunny days at the end in Lucerne.
I started my
trial on Tuesday, October 7th, and it was ONLY an eleven-hour day. The day was not without some hiccups as I
pretty much expected since I am patient #1 on the Phase 2 of the trial at
UCSD. The next visits are weekly and should
only take about 2 hours. The big
question is how will we know I am responding?
It will probably take about a month or two to figure that out. In the Phase 1 trial of this drug about 80%
responded, which is really good considering all of the people in Phase 1 are
people like me, heavily treated and with poor prognostic markers. I am hopeful I will be on the 80% side. There is not much long-term data, so we also
don’t know how long the expected results will last. That is why there are clinical trials.
Within the next couple of months, I can provide an update of
how it is going.
Terry
