If anyone can chime in on high RDW blood results. Has anyone had high values and has your Dr been concerned? Mine have been high since dx and the blood nurse told me it probably means the cml is going to be harder to treat. Is this true?
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red cell distribution width (RDW
My RDW has been between 1 and 5 percentage points high for months. No one has ever said anything. I am a slow responder, a turtle, am resistant to Imatinib. I see my Onc this coming zthursdsy and will ask.Gitel
Never heard of it. Not sure, but I don’t think it has anything to do with cml. It sounds like totally different thing.
Hi there
I'm not sure that this is what you are referring to, but I was told that my red cells were "larger than usual" as a result of TKI treatment. Apparently this hampers their ability to enter between membranes and impacts their oxygen-carrying power, resulting in fatigue. However, I think my doctor used the phrase "macrocytic anaemia" to describe this condition - not sure if it is the same thing?
Sorry if this isn't very helpful!
Best wishes
Martin
Yes, my RDW was about 25% too high at dx (April 2017), went up in early months on Imatinib, then started to go down around 9 months in, and has been normal for me since. MCV is a little high and going up. Oncologist says MCV will probably stay high as long as I'm in treatment. Most other results are pretty good now. I have not achieved MMR (last result was 0.168 IS -- close but not there yet) after 18 months on 400 mg Imatinib. At every visit he says "Stay the course." Last visit we talked about possibly changing to a different TKI to see if it makes a difference, but my health is good and side effects are minimal, so we are waiting for next appointment in December. I continue to struggle with the swollen eyes (I really, really hate seeing myself in the mirror and photos!!) and ever-present fatigue. Compared to others I know with cancer, this is a walk in the park!
Justine - I was right where you are, and at the same time frame, on Gleevec. I had a lot of trouble with it, but the VERY worst for me was my eyes. I didn't know WHO that was in the mirror. It was really, really, really stressful and depressing. I don't think it's unreasonable in your situation (being virtually at MMR) to ask for a switch to Sprycel, just to see if that periorbital edema can be taken out of the equation. It was night and day for me - literally - one day horrible, next day the mirror told me the real me was back. It isn't a perfect effect, and maybe it doesn't work so dramatically for others, but I think it's worth a try. Other than the tedium of the prescription change, insurance, yadda yadda, it's worth seeing if you could do something about it. One thing I'm pretty sure about - if you have the toad eyes on Gleevec, they will never get better as long as you stay on it. Some people can, mercifully, accept it and get used to it. I just couldn't. Maybe if you are able in the future to reduce the Gleevec significantly (like 200 or 100) you might get some relief. But I'd give Sprycel a whirl.
last week cbc showed RBC count of 2.9 RDW was 19.2
Looking at my historic results, I note that the range does change from time to time, even from the same laboratory. The current range is quoted as [12.2-14.8]. Since diagnosis, all of my results have been between 1 to 2 point hire the upper limit. However, I am assured that this presents no concern.
Jason,
Your RBC count is low and that is why your RDW is high.
Your body is trying to accommodate the need for red blood cells by having larger cells to hold more hemoglobin. This is a typical response to anemia induced by TKI's for some CML patients. I have the same issue, but my RBC count is higher than yours (but still below normal).
What is your hemoglobin level? That will tell you if you have sufficient oxygen capacity and can get by with fewer RBC's.
I have added B-vitamins (especially folate and B12) along with a 'heme' based iron supplement to maximize red blood. It helps a little bit in that my hemoglobin number is in the normal range (albeit barely!).
TKI's - especially Dasatinib (spyrcel), can cause red blood suppression (and white cells too).
Hi Jason
i just had a look at my husband Paul’s results and at 5 months after ex his RDW was at his highest at 21 ( should be less than 16.4) Now at a year it’s in norm range again. He still has other low white and red cell counts tho which I am sure are due to suppression from the Sprycel. They have stayed pretty stable last 6 months even tho he has been on different doses of Sprycel in that time ( 100, down to 50, up to 70) .
He does pretty well with these numbers and I think he has adjusted to his new normal. Main thing is he gets enough sleep.
He did however totally over do it last weekend wild camping at an elevation of over 10000 ft. He said hiking up he felt like he had a metal band round his lungs and his heart beat really fast and he got no sleep. So that was def a bit of a wake up call to not push so hard in future !
We were just talking if he could take anything to boost his red blood count ( his hemoglobin is also low( 12.3, should be 13.5) so we will try what you suggested Scuba.
justine , Paul really suffered from swollen eyes on Sprycel at 100. That was main reason he dropped to 50. It immediately improved his eyes but unfortunately his dr insisted on going back to 70 after last ABR test increased slightly. but thankfully on 70 his eyes have remained unswollen. The swollen eyes really upset him so I would really recommend trying a different TKI to try and get rid of them - it is possible !
Best Louise
I have bookmarked a very good UK explanatory table explaining the various blood tests in tabular form. It is from a website of our CLL "cousins" but still helpful. I have not seen a CML equivalent.
https://www.cllsupport.org.uk/cll-sll/start-here/understanding-your-bloo...