Scuba, thanks for that info. The reason you switched from G. was myl.suppression, right?
The hives came back yesterday with vengence so I will do what I have been dreading,
taking the Medrol pack of prednisone. I stopped the G. for two days thinking it would
resolve, but I must rid myself of these hives before taking Sprycel.
(The hives may be the thyroid). Will come to Houston to see your onc.
if I can't get mine to see the reason behind this.)
Did 20 mg ever send you to ER? I have a dread of hospitals.
I switched from Gleevec primarily because it wasn't working at the lower dose needed to prevent myelosuppression.
At 400mg. I had an immediate blood response (counts returned to normal; fever and other disease symptoms went away quickly). but slow CML response. Continued Gleevec treatment and myelosuppression kicked in. The thinking at the time was that I would overcome the myelosuppression with stim shots or a lower initial dose. My myelosuppression continued and I had to stop Gleevec for a few weeks. I decided to change oncologists and seek an expert in the field who had a lot more experience with CML than my first oncologist. I avoided stim shots. At my new doctor's clinic (M.D. Anderson) he wanted me to avoid stim shots as well and instead wait until my ANC rose above 1.0.
A new FISH test showed I was back at 100% with borderline accelerated Blasts just like at diagnosis but without the disease symptoms (i.e. fever, fatigue, sky high WBC'). My CML just mushroomed back when Gleevec was suspended. Once my ANC went above 1.0, I was started on 70mg Sprycel (I also started Curcumin around that time (8 grams 95% curcuminoids)). The Sprycel tanked my ANC numbers faster than Gleevec ever did - and in only a few weeks my ANC had plummeted to 0.1 (not good). I had to stop Sprycel. The new plan was to let my ANC come back to over 1.0 again and then re-start Sprycel at 20 mg. and work up.
The good news during this initial 70mg. of Sprycel was that my FISH level dropped significantly and my blasts reduced to normal. But unlike when I stopped Gleevec and my ANC rose quickly, my ANC this time did not rise as fast. I was off Sprycel for about 3 months as I watched my ANC rise slowly .. 0.4 ...0.5, 0.6, 0.6, 0.6, 0.7 .... etc. It was a glorious 3 months. No drug and I felt great. Noteworthy was that my FISH during this time didn't change when it was measured, in fact, it continue to drop (just a bit lower) without any drug at all over those three months.
When my ANC finally went above 1.0 (at 3 months), I was restarted on 20mg Sprycel and sure enough my ANC number started to drop again - but this time it stabilized at around 0.4. My oncologist said he was fine with me staying at Sprycel 20mg. with no more drug breaks. And from that moment on, my FISH went to zero in a few months and PCR dropped to MMR a few months after that. My ANC slowly rose back to near normal (1.5-1.7) as I continued taking 20mg. Sprycel. I had crossed over. Because 20mg. Sprycel was working I was kept at that level and dose increase was cancelled. As mentioned before I managed to obtain PCRU on this low dose*
I have never been to the ER. When I took 70 mg sprycel, I felt the headaches and the "strange feeling" shortly after taking it. When I re-started on 20mg. I felt nothing. No side effects that I could feel.
Hope this is useful to you.
*(I also take upwards of 8 grams of Curcumin a day which I believe enhanced the effectiveness of low dose Sprycel. It is my opinion based on my own research and consultation with researchers in the field. Others in this forum poo poo Curcumin as is their prerogative. When I asked my doctor if Curcumin was helping he told me - "maybe it is - maybe it isn't. We'll never know without a clinical trial.").
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"