16 replies to this topic

[rosegrace]

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. 

[gerry]

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

[rosegrace]

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

[hannibellemo]

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.

[gerry]

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.

[rosegrace]

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. 

[gerry]

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.

[Pin]

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

[hannibellemo]

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

[rosegrace]

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

[AllTheseYears]

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. 

[rosegrace]

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. 

[Jan0080]

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!

[gerry]

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 

[gerry]

Welcome Jan0080.

 

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

Reading For The Newly Diagnosed CML Patient

[hannibellemo]

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!

[rosegrace]

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.