Initial appointment/UCSD Dr Michael Choi

[SueTG]

I have my initial appointment with Dr. Choi at UCSD this Friday 10/4/17. Only 70 miles from home. If all goes well this will likely be my "go to" CLL specialist.

My labs have been sent from my local oncologist's office for Dr. Choi's review.

I was diagnosed in January this year and found deleted p17 in July. Began Ibrutinib as first line (?) treatment very soon after.

Any suggestions as to questions I should ask, or information I should obtain at this first appointment?

Thanks,

Sue

[Spacee]

Sue, My husband is 17p deleted also. May I ask what symptoms you are having? I have to admit, I usually do not have any questions for the doctor but then hubby isn't on meds. Our place is starting a clinical trial in the Spring so I am calling this week to find out what meds. It seems to be for mutated patients with no symptoms.

Good luck to you in this new stage!

Linda (Spacee)

[SueTG in reply to Spacee]

Hi Linda,

I was first diagnosed in February by my local oncologist. At that time he suggested watch and wait, but ordered complete blood counts frequently (every 60-30 days). My white blood count and lymphocytes were on the rise pretty rapidly and hemoglobin dropped markedly. At this point doctor ordered FISH and an abdominal ultrasound. It was determined I had 17p deletion and my spleen was enlarged at twice normal size. This change all came about within 4-5 months of my initial appointment.

Personally, the only symptoms I noticed were "hot flashes" and pretty extreme fatigue. I call them "hot flashes" though others refer to night sweats. I had them frequently at various times of the night and day. As to the fatigue, my normal was to spend an hour at the gym, moderate exercise at least four times/week. I hadn't been in months. I'd get up and dressed some days, but just couldn't make it.

In July my oncologist started me on Imbruvica. This is the first and only treatment I have had so far.

Good news! I made it to the gym for the first time in too many months yesterday!

Though I could have made this a briefer reply as to your question, I guess I needed to answer fully, as much for myself as for you.

Thanks for reaching out.

Warm and Best Regards to both of you,

Sue TG

[Spacee in reply to SueTG]

Yes, Sue! I understand the need to tell! But it was all good to learn. Hubby golfs and walks for exercise. A MD Anderson doc says when a man can no longer golf, then it is time to treat.

So glad you are back at the gym and feeling better!!

Linda

[Hoffy]

He is my Doctor. Very good and has a great dry sense of Humor. Works under Dr. Kipps who is one of the Top CLL Doctors in the country.

The question I would have is should you stay on Imbruvica or move to Venetoclax or something else. I am not sure what is allowed either. If it is working you probably don't have to move but you don't want clonal evolution as well.

I am 17P deleted as well. I am on Imbruvica plus Venetoclax clinical trial.