Advanced Member
Posted 06 May 2014 - 07:19 PM
Hi everyone,
I got my first (3 months) PCR results yesterday and the result was 14,41% IS. Not great, but not bad. I was in generic gleevec when i did the test and a few days later i restarted the brand one. My CBC is ok: 4.200 WBC (2.200 ANC), 15,5 HG and - again - 86K platelets. I feel great and i hope i can continue on gleevec with better results.
Cheers!
Advanced Member
Posted 07 May 2014 - 07:56 AM
Hi Lucas,
I got mine yesterday also!
After 3 mos on Sprycel, mine is b2a2- 0.001% and b3a2 - 0.386%. I think doctor said it meant a MMR. But now I think it's not so, maybe an 'almost MMR'.
My wbc is 4.3, Hgb - 11.6, rbc - 3.69, hct - 34.1, lymph% 50.9, mono% .2 and platelets - 226. I am assuming I have had a hematologic response. . .forgot to ask onc.
I am feeling well, just have occasional fleeting headaches, rashes, eyeball swelling, and fatigue.
Take care. So glad we're into Spring.
Winespritzer
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
0.00- 4/16-10/17
70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17
tremendous reduction w periorbital edema and fatigue
Advanced Member
Posted 07 May 2014 - 04:05 PM
Great results winespritzer!! I hope you can maintain this response and get a better Hgb!
Advanced Member
Posted 08 May 2014 - 08:52 AM
Dear Lucas,
Do you have any ideas on how to increase that HgB? I went for prime ribs the other night but am still fatigued.
Glad you are doing well.
And totally grateful to all who write on the blog. Helps me tremendously.
Winespritzer
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
0.00- 4/16-10/17
70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17
tremendous reduction w periorbital edema and fatigue
Advanced Member
Posted 08 May 2014 - 10:31 AM
Hi, thanks for your courtesy
I don't know much about how to increase HGB. It's probably low due to your medication and it must back to normal numbers within some months. Maybe you can look for a nutritionist and do some exercises. If it don't help with Hgb, at least it will get you healthier.
Cheers
Advanced Member
Posted 28 May 2014 - 04:50 PM
I've just received my first cytogenetics test (3 months) and i'm not glad with the results: i had only 7/20 WITHOUT the bcr/abl gene. my PCR was 14,41% by 3 months (IS). What do you think about those results?
Bests!
Advanced Member
Posted 28 May 2014 - 05:23 PM
Hi Lucas,
What did your oncologist say? Was that a FISH test? My doctor told me he doesn't rely on cytogenetics but on MMR.
I just hope my bcr/abl numbers continue to decline and my cbc counts hover at least near normal.
I am though exhausted!
I think Trey would have the answers.
Winespritzer
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
0.00- 4/16-10/17
70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17
tremendous reduction w periorbital edema and fatigue
Advanced Member
Posted 28 May 2014 - 07:31 PM
It is progress, so focus on that. Most people don't have 3 month BMBs unless they are doing poorly so there is not much history to relate it to. I would wait for the 6 month to see how all is going. You are doing well enough so far, even if not stellar.
Advanced Member
Posted 29 May 2014 - 06:26 AM
Thanks Trey and Winespritzer,
My doctors said that sometimes it's normal and they are thinking to change the guidelines here and do a BMA in 6 months and not at 3 (they too think it's too early). I'll have another PCR in two weeks to see how's everything is doing. Another doctor thinks that my not optimal response is due the time i used generic medication (she doesn't believes the brazilian's generics are as good as the original because we didn't have many trials. Now i'm on my second box of the brand one). At least, my counts are not bad: 3800 wbc (1800 anc), 14,5 hgb and 82K plts.
The funny thing about my citogenetics was that they found out another translocation wich i was born with and my normal karyotype is: 45, XY, der (13;14) (q10; q10). I was already a mutant before CML!!
Winespritzer, you're doing great! your counts will get better. it's just a matter of time.
ps: there was i nice discussion about generics at CML Horizons 2014 https://www.youtube....h?v=URm1FCREuJg
Bests!
Advanced Member
Posted 29 May 2014 - 08:15 AM
Dear Lucas (and Trey),
Glad you got more info from your doctors. I know it helps us move on, especially because it's foreign and we want to reach the milestones.
Sounds like you'll be OK..
My brain doesn't work like Trey's. I wish it did. I still do not have a good handle on what all the numbers mean even though I've read all of Trey's blogs, many times!
Thank you for your suggestions. I'm exercising on most days, have talked to my internist about nutrition and did notice that when I exercise and walk, I am not as exhausted. I just hate exercising.
I wish you well.
Winespritzer
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
0.00- 4/16-10/17
70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17
tremendous reduction w periorbital edema and fatigue
Advanced Member
Posted 29 May 2014 - 05:58 PM
Keep strong!!
Eat well and do some exercises. it will help you with the side effects. you're on the right track!
0 members, 1 guests, 0 anonymous users
