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#1 rosegrace

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Posted 05 January 2017 - 10:56 PM

I have been diagnosed with CML last August 31, 2016 and started on Generic Imatinib lateNovember 2016. I noticed that even with Imatinib I still have a bruises appearing. It often happens that once one heals I see another bruise coming. Is this normal? My blood tests are up and down except for my RBC which is still below normal. Last week my Platelets was down but it went back to normal again this week. It's so stressful to wake up each day and check if got another bruise. 



#2 gerry

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Posted 06 January 2017 - 12:44 AM

No side effects from the Gleevec? That's a great thing, hopefully your RBC will normalise and you won't see so many bruises. :-)

#3 rosegrace

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Posted 06 January 2017 - 08:08 AM

Just nausea right after I drink the meds that's why I take it before bed time to minimize the effect. I pray that my rbc would get normal and the bruises will be gone. It's getting worrisome seeing them :(

#4 hannibellemo

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Posted 06 January 2017 - 08:19 AM

Welcome, rosegrace! It's been 8 years and my RBC is still slightly below normal. My WBC returned to the normal range just within the last year. That IS pretty normal for those of us with CML. I take Sprycel and I bruise more easily because platelets are slightly less "sticky" with that TKI. I don't remember if the same was true with Gleevec as I was only on it for 9 months.

 

Give it time, it takes awhile for side effects to normalize. The bruising doesn't mean anything in terms of worsening CML.


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#5 gerry

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Posted 06 January 2017 - 03:26 PM

Hi rosegrace,
You are taking your Gleevec with a meal? Plus the info recommends not lying down straight away when you take it. And you can get anti nausea tablet from your specialist or GP to help with it.

#6 rosegrace

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Posted 06 January 2017 - 06:26 PM

Yes I'm taking it after a meal but I didn't know I can't lie down after oohh I need to change that. My doctor did not tell about that have to check with him. Thanks for the info

 

Thank you so much Hannibelle and Gerry for replying to me query, I am relieved that my RBC not bouncing back is not a cause for concern nor my bruises. 



#7 gerry

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Posted 07 January 2017 - 12:34 AM

I checked through the gleevec pamphlet to see if I could find the info about not lying down straight away, but that wasn't where I saw it. I read it on the GIST site so feel free to ignore that comment.

#8 Pin

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Posted 07 January 2017 - 05:36 AM

It's definitely a thing Gerry, whether it's in a pamphlet or not! I never lie down within at least half an hour of taking it, sometimes longer if I've had a big meal with it

Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#9 hannibellemo

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Posted 07 January 2017 - 07:58 AM

Not lying down after a meal or ingesting just about anything is good advice for anyone with reflux issues.


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#10 rosegrace

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Posted 07 January 2017 - 08:48 AM

Thanks for all your advice. Started not lying down after taking the meds. A bit hard but tolerable.

#11 AllTheseYears

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Posted 08 January 2017 - 11:07 AM

Hello, Rosegrace.  I understand your apprehension after your CML diagnosis and your beginning Gleevec.  I just want to tell you that what you're experiencing is normal.  Wow, a sore on my little toe!!!  Help!!! I was diagnosed with CML almost 16 years ago and have been taking Gleevec all that time.  Even today I get anxious when anything about my health changes. I just accept that I do that.  I get things checked out, then calm down.

 

 I make a point to eat well, exercise (whether I feel up to it or not), spend time doing things I enjoy (especially when I get one of those anxiety attacks), rest, and take my Gleevec with a meal/water in the evening.  In my experience, lying down after a Gleevec dose does cause nausea. Also, not having a full stomach when taking Gleevec increases the chance of nausea. I also recommend taking magnesium and potassium.  I add biotin to minimize hair loss and lubricate my eyes and skin to fight dryness and take cod liver oil. I avoid any drug I think superfluous to avoid the possibility of interference with Gleevec's magic powers :)  

 

Your journey might be rough at times, but please just keep on keeping on ... and celebrate life. And FYI: I still bruise fairly easily and I still get concerned about it sometimes. 



#12 rosegrace

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Posted 09 January 2017 - 12:34 AM

This is just so new to me because I'm not the type of person who get sick often. Never thought that my first sickness would be this serious. I was just a bit concern because my doc was expecting my RBC to bounce back after a month of taking Imatinib so I was wondering if there was anything wrong. It's great that I found this forum which helps me understand what I am going through. 



#13 Jan0080

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Posted 09 January 2017 - 01:21 AM

Just started on Sprycel. Age 66. Somewhat freaked out but also hopeful and thankful that there are miracle drugs for my problem. Glad to get any tips and tricks. Thanks all!
Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!

Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.

#14 gerry

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Posted 09 January 2017 - 04:12 AM

The NCCN Guidelines state that  "Most patients will have a Complete Hematological Response (CHR) within 3 months of starting a TKI." so you still technically have two more months before looking to increase or change TKI.  

 

https://www.nccn.org...s/files/cml.pdf 



#15 gerry

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Posted 09 January 2017 - 04:15 AM

Welcome Jan0080.

 

Have a read of Trey's thread further down the forum 

Reading For The Newly Diagnosed CML Patient

#16 hannibellemo

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Posted 10 January 2017 - 09:25 AM

Just a word about the CHR mentioned in the NCCN Guidelines. That response actually refers to a return to normal or below normal range. For many of us the below normal is "normal" for months and even years to come. A change in TKI should not be considered if everything else (FISH and/or PCR for BCR-ABL) is responding but your CBC counts remain only slightly below normal. However, if counts plummet then a break might be called for until things stabilize.

 

It sounds, rosegrace, like your onc may not have much experience with CML (which is often the case). Be a good advocate for yourself by sharing things you learn here and through your own research. Trey's blog is a good place to start. 

 

http://community.lls...ed-cml-patient/

 

Good luck!


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#17 rosegrace

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Posted 10 January 2017 - 08:01 PM

Thanks. I've been noting all your advice and I will ask my doctor about them. I had my blood tests and it has gone down again with a platelet of 60, the rbc is 2.7 and wbc has also gone down to 3.1. But reading through trey's blog and your advice, I'm a bit more calm but will have to check with the doctor again on what's next.






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