I have been on 600mg for two years now and after the first 4 months after diagnosis, not an issue. Hasn't impeded me from doing anything or left me feeling crappy. I leave that to the wife. You'll do just fine.
Just Diagnosed CML and anxious to begin journey
Started by
JackRyan8311
, Oct 04 2017 07:59 PM
28 replies to this topic
#22
kat73
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Posted 12 October 2017 - 04:35 PM
Some people like to have it with a substantial meal; some people can manage with just some quick crackers. Bottom line, NEVER on an empty stomach or you'll be sorry!
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#23
tiredblood
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Posted 12 October 2017 - 07:42 PM
I found what Buzz said to work well for me also.
#24
JackRyan8311
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Posted 12 October 2017 - 07:52 PM
Thank you everyone!
Diagnosed 9/15/2017
WBC 56,000
PCR- I think was 58%
Imatinib 400mg 10/18/2017
WBC 56,000
PCR- I think was 58%
Imatinib 400mg 10/18/2017
#25
Red Cross Kirk
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Posted 13 October 2017 - 10:35 PM
From the Gleevec package insert: "The prescribed dose should be administered orally, with a meal and a large glass of water."
When I first started taking Gleevec I figured a little extra water wouldn't be a bad idea.... but it was. The technical term for the resulting phenomenon is known as "sharts". Just stick to one glass of water and you'll be fine!
Kirk
9/25/2012 p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012 3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013 0.914%, 0.434%, 0.412%
10/2013 0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014 0.174%, 0.088%, 0.064%
2015 0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%
2016 0.041%, 0.039%, 0.025%
2017 0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%
2018 0.233%
#26
JackRyan8311
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Posted 14 October 2017 - 12:08 PM
Thank Kirk, that made me snort and laugh.. brightened my day!!
Diagnosed 9/15/2017
WBC 56,000
PCR- I think was 58%
Imatinib 400mg 10/18/2017
WBC 56,000
PCR- I think was 58%
Imatinib 400mg 10/18/2017
#27
JackRyan8311
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Posted 23 October 2017 - 02:58 PM
Update: got my BMB results from previous Onc, unsure how to interpret them but I see my new Onc on 11/7 .
It did say 90% bone marrow with granulocytic left shift
Neogenomoes Cytogenetics
Karyotype 46,XY,t(9,22)(q34.1;111th.2)[20]
Myeloblasts 3
Promyelocyte 1
Myelocytes 31
Bands 13
PMN Neutrophils 22
Eosinophils 6
Lymphocytes 2
Plasma cells 2
Monocytes 2
Megablasts 1
Rubriblasts 1
Prorubricytes 1
Rurbricytes 1
Metarubricytes 13
I started on 400mg of Imatinib yesterday. So far just some queezy stomach. I am feeling good.
It did say 90% bone marrow with granulocytic left shift
Neogenomoes Cytogenetics
Karyotype 46,XY,t(9,22)(q34.1;111th.2)[20]
Myeloblasts 3
Promyelocyte 1
Myelocytes 31
Bands 13
PMN Neutrophils 22
Eosinophils 6
Lymphocytes 2
Plasma cells 2
Monocytes 2
Megablasts 1
Rubriblasts 1
Prorubricytes 1
Rurbricytes 1
Metarubricytes 13
I started on 400mg of Imatinib yesterday. So far just some queezy stomach. I am feeling good.
Diagnosed 9/15/2017
WBC 56,000
PCR- I think was 58%
Imatinib 400mg 10/18/2017
WBC 56,000
PCR- I think was 58%
Imatinib 400mg 10/18/2017
#28
AllTheseYears
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Posted 26 October 2017 - 02:54 PM
Jack,
You seem to have a good attitude and that will go a long way during your CML adventure. Keep asking questions, stay informed (check this site regularly), take care of yourself (it's really important now) and don't be timid about advocating for yourself. These things have helped me adjust to the "new normal" of LIVING with CML. And it's been 17 years since my diagnosis! I've been on Gleevec the entire time, though now at half-dose for a while. Some ups and downs through the years but always manageable.
#29
JackRyan8311
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Posted 27 October 2017 - 01:33 PM
Thanks, I really appreciate the advice, helps me see the road ahead is still very bright.
Diagnosed 9/15/2017
WBC 56,000
PCR- I think was 58%
Imatinib 400mg 10/18/2017
WBC 56,000
PCR- I think was 58%
Imatinib 400mg 10/18/2017
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