Hi all,
Been taking Sprycel for one month now and recently had latest blood work which showed all my wbc and plt counts have normalized. But.. my rbc, hemoglobin and hematocrit have really bottomed out. I guess that would be anemia? Also slight fluid retention in my lower legs. Doc didn't seem concerned and said compression socks would be beneficial. Anyone have any experience / advice with this situation?
Thanks,
jb
I did have fluid retention in lower legs prior to diagnosis. In fact, that is what made me go to the emergency room to figure out why that was happening. I have not read of any other cases where this was the presenting issue of CML. Basically I took my socks off one day after work and the area above the socks looked bloated. I knew that was not normal so decided to get it checked out. I had also had a feeling of fullness on my left side but had no idea why. I was then diagnosed and started treatment.
It is hard to comment without context of "really bottomed out" but if your oncologist is not concerned then I would try to relax and observe for the next couple of labs. I think your side effects will subside as is the cast for the vast majority of us.
Fluid retention in lower legs? This might be because you are not taking enough exercise, even while you are sitting you could try to keep your feet and legs in motion. Blood/fluid tends to pool at lower levels so apart from walking, try the following:
A couple of exercises help to prevent fluid from pooling. Do them a few times a day or as you feel the need until you see an improvement.
Leg lifts: Holding the back of a chair for support, lift one leg off the floor and move it backwards, keep you knees straight.
Frequent, short bouts of exercise can help your edema more than infrequent exercise.
Also, you could elevate your mattress when sleeping at night so that your feet and lower legs are above the level of your heart.. you can do this with a few large books or a yoga block if you have access to one.
Try not to sit in a chair too much during the day, if you need to rest lie down flat with lower legs raised.
Hope this is helpful, but as soon as you can summon up the energy, try to walk as much as possible, even a short walk on a flat surface really helps. I know this might seem counter-intuitive, especially when your HGB is on the low side <10 (often the case at diagnosis and for some time after starting TKI therapy) building up your stamina with daily gentle exercise.
When I was first diagnosed my HGB was often less the 8 and I could barely walk 20 metres without having to rest. But with the encouragement of my partner I gradually built up my exercise (just slow walking) and after around 2 weeks I could walk 1 mile without tiring too much.
TKI therapies can suppress the HGB also.... your body will adjust eventually.
Sandy
Hi. I've been taking Sprycel for 31 days now and I have weekly blood tests. My hemoglobin and platelets were low last week, and are now back in the normal range. My WBC have been normal and are now low this week. My point being, is they do move around. I was very concerned when I saw my WBC count was below the normal range. My doctor tells me this is all to be expected and that they are watching all my levels. I suspect what is going on with you is similar. I also have slight fluid retention in around my knees - the doctor seemed unfazed by that too. I think exercise helps a lot at keeping the swelling at bay.
