I'm reaching out again having had an appointment with my onc today. its been five weeks since my last appointment on Sept. 25 with no testing during this time.
To recap, since my DX on Aug 1, i was on 100mg sprycel for four weeks with weekly CBC and then my platelets were too low so I stopped the drug for a week. When I resumed, i was instructed to take the 100mg everyother day. My onc chose this path rather than prescribing a lower daily dose because I coincidentally recieved 30 tabs of 100mg just as my platelets went too low.
I've has anxiety about this "everyother day" approach as I can find no information that says its a recommended approach. In having read more I now understand how the half life works and believe that after 24 hours theres only about 3% of Sprycel left in the body.
As of today i've been taking the 100mg every other day for approximately 5 weeks.
I talked to the onc about my concern and she said I should not worry, that she has used this approach in the past.
My experience today was discouraging. I went in for my blood draw and the technician told me I had missed an Oct. 7 appointment for a blood chemistry draw. I let her know I had no knowledge of this appointment. I then asked her about what she was drawing for today and she replied CBC only, I then inquired about the PCR test that is supposed to happen with this apppoinment and she told me she would draw extra blood in case the onc wanted the PCR done.
I then met with my onc and it was obvious she was very stressed and super busy. She was confused about the Oct. 7 appointment and was surprised the tech didn't know about the need to draw for PCR.
Upon review of todays CBC she told me my plateltes are too low, (now 86 previous 141) and that we might have to switch drugs as low platelets are a side effect of the drug. I asked if this was Myelosupporsssion and she said no.
Backing up a bit.....Note that a week ago, prior to my apointment today I was informed that she had ordered 30 days of sprycel 70mg to be taken daily so that I would have meds on hand when my 100mg supply runs out next week. I don't understand prescribing in advance of reviewing current tests......
in talking about the platelet issue I asked how it was possible to consider taking 70 mg a day given the low count issue when I have been been taking the equivalent of 50mg a day......She then agreed the prescription had to be changed to 50mg daily and she changed it right there in the office on her lap top.
As our visit was wrapping up she told me not to worry that we would get a handle on my CLL. I pointed out that I have CML.....
She said she would see me in a month, no mention of following up next week on PCR test results which are expected on Tuesday.
She also mentioned she didn't think I would get near the desired 10% PCR goal for 3 months. I have no idea why she would think this?
My overall impression of the onc's operation is good but it is overloaded, hence all the confusion and disconnects. Technology is heavily relied upon to keep things moving, but its all going too fast for the people to keep up.
I don't have good confidence that I am getting the best care. I think I need a second opinion on whats going on.
Los Angeles is the closest big city. I'd appreciate any suggestions on a second opinion onc.
Here are levels from todays CBC, high and low labels copied from report (previous values in parenthesis)
WBC 3.8 (6.2)
RBC 3.81 low
HGB 14.9 (14.8)
HCT 35.7 low (44.9)
MCH 39.1 high
MCHC 41.7 high
RDW 15.4 high
Plat 86 low (141)
MID CELLS % 6.8
ANC 2.5 (4.5)
Mid CELLS # 0.3
Any thoughts or suggestions much appreciated.
Aug 1 -2017 DX as a result of annual physical. I had been feeling tired and out of breath, WBC 130,
Baseline PCR 100 IS
Aug 4 Start Dasatinib 100mg daily
Aug 30 Stop drug due to Myelosuppression, CBC counts too low
Sep 8 Resume drug. (Onc prescribed 100mg every other day even though 50mg was the new desired
dose, this tactic because I had coincidentally just received 30 tabs of 100mg.) This every other day regime continued through Nov 8.
Nov 3 PCR 35.96 IS
Nov 7 New Oncologist
Nov 9 Start taking Dasatinib 50mg daily
Nov 25 Bump up dose to 70mg daily
Nov 30 PCR 14.79 IS
Jan 4-2018 PCR 2.65 IS