30 replies to this topic

[Pin]

Hi all,

Just wondering if anyone is able to help me with a question...

I'm almost 2 weeks into my treatment (Gleevec 400mg) and am having real trouble with fluid retention. My eyes and face tend to swell up overnight after lying down (then it clears gradually during the day) but then over the course of the day I swell up everywhere else! It feels like I put on about 2-3kgs (4-6lbs) during the day (I don't have scales though - yet!), and by night time I feel really heavy. I have cut out as much salt and processed food as possible, and I am drinking a lot of water but I haven't asked my doctor about fluid tablets yet.

What I'm wondering is - is this likely to get better for me? i.e., Will I gradually get used to the drug and my body will adjust? Or is it something that other people have found can hang around for years (or forever?). Or is it just one of those things that is different for everyone...

I did get some really good news yesterday though that my white cell count is now 9.6k , which came down from 125.0k (I was 157.0k at diagnosis).

Thanks all,

Pin.

[HeatherZ]

I have been on G for 15 months now.  I had been having an issue with fluid retention since the beginning but mine was mostly around my face and eyes and would be worst in the am.  Over the last year I noticed I was putting on weight even though I was eating better and taking better care of myself.  I felt bloated most of the time and when i got my period it got even worse.  Last week at my appt with the Onc I told him I could not deal with it anymore.  I said I either needed a water pill or a cut man to come over every morning because when I get up I look like a boxer after going 10 rounds.  he gave me a water pill and after just 2 days I had dropped about 9 pounds of fluid.  I did find that when I would be out in the heat I would start to feel dehydrated really fast so on days when I anticipate being outside a lot, I have not been taking them.  But they definitly help.  I have not taken one the last couple days since I knew I would be outside a lot over the weekend but I took one today because I know I need it.

[CallMeLucky]

I get the puffy eyes that come and go.  I also noticed some issues around my ankles depending on what kind of socks I am wearing.  I often get deep impressions in the skin that last for a few hours after I remove my socks.  Visibly my legs don't look swollen, but there is a difference since beginning treatment.  For me it seems to cycle like most of the side effects.  Some days are worse, others are not too noticeable.

Congratulations the good counts!

[GerryL]

Hi Lucky,

Have a look for diabetic socks - they don't have tight bands at the top, but still stay up.

[Pin]

Thanks everyone

Are there any kinds of problems/issues that taking water pills can create? I mean, can you take them every day if you needed and it wouldn't interfere with your health too much?

I assume they are safe to take with our meds too...

[GerryL]

Talk to your specialist about it. I know there are a few people on the board who take a fluid tablet every day, and have no issues with it, But my specialist and GP only want me to take it when I need it - but the only way I know that is after the excess fluid effects have taken place. I take mine about two or three times a week, depending how I feel.

[Pin]

Haha - thanks Gerry - I was thinking that too - mine comes on gradually during the day, so I would only really know by the evening whether I needed one or not!

I went for a jog this morning in the freezing cold and that seemed to help my face calm down faster than usual

[CallMeLucky]

Thanks Gerry, I'll check them out, but I loathe the thought of it.  Perhaps they have designer brands

[jjg]

Hey Pin good news with the WBCs.

I have a bit of fluid floating around but I never know if it's bad relative to others or just "shrug" nothing much.

On a scale of 10, if 0 was pre-G, 5 was when you hoped your specialist might do something about it and at 7 you had a hissy fit until somebody took some notice. I thinking I'm about a 3 in these photos? Actually I have no idea.

I'm not showing you / asking you to rank the rest of me...don't go there 

After nearly 5 months it looks like this every 2-3 weeks and if  I'm going through a bad patch it is still quite noticeable during the  day. Of course it clears up beautifully before I see any  doctor.

Would you be asking for diuretics? I asked once before and she  wasn't keen but I could ask again about using them occasionally as per  Gerry.

I also had an ankle injury a year before dx and even though the ankle seems ok when I'm "fluidy" it swells up massively compared to the other one. Anybody find this with an old injury?

[Pin]

Thanks Josie

I should be talking to my specialist today and I will ask about diuretics I guess - so far her reaction is to say that anything I get will likely get better over time (but being me, I want to say - How much time? How much better? When? When? I feel like a big watery jello monkey etc. etc.).

For me, the facial swelling is irritating, but it tends to clear up relatively quickly if I get up and move about - but it is not as uncomfortable as the generalised body swelling (I just feel so heavy!) and this seems to come on slowly over the course of a day, which is completely the opposite to my face (or maybe I am just eating too many bon bons...)

Anyway, it is annoying, but the overall goal is to treat the disease, which so far (fingers crossed) is working ok so I am thankful for that.

I've had loads of injuries over time so I will start watching them more closely and let you know!

Also, when you say every 2-3 weeks do you mean just for one day, or does it last longer than that?

[jjg]

Yeah I worry about the bon-bons too...buy some scales    remember your weight can fluctuate 2kg during the day with exercise, hydration, food....and bon-bons

My eyes look a little swollen every morning but normally clear up...as you say with morning exercise. Then every 2-3 weeks they go demented: swell up quite quickly sometimes during the day and stay ugly for 1-4 days before going back to only the mild morning thing.

The eyes is only a minor thing (hate it because the students don't know about my CML and I'm sure they're looking at my eyes and helmet head rather than listening to the lecture), but no way am I messing with my dose for a little vanity.

[GerryL]

I think if you take your Gleevec at night you're more likely to have fluid around your eyes, I sleep on a couple of pillows, so never had it around the eyes very much but used to suffer it in my throat tissues. I would feel like I couldn't swallow through the night. Now I take it in the morning and get a bit of fluid around my ankles and at least once a week feel like a bowl of jello in the body. I mentioned to my specialist that it seems worse in on ankle than the other, he asked if I had done some injury to the leg to make the circulation worse in it.

Exercise will help as it moves the fluid around your body and hopefully you work hard enough to sweat it out. I don't do enough. Even watching what you eat and drinking more fluid doesn't always help, but for me it is the major side effect, so can't complain too much.

[GerryL]

Hi Lucky,

There could be a potential untapped market there for some enterprising person - designer diabetic socks.

[Susan61]

Hi:  I constantly get the swollen eyes, especially when I first get up in the morning.  I put a cold compress on my eyelids, and the swelling goes down.  Its very noticeable, and my husband says my eyes take on a different shape everyday with the fluid.  Some days they are better than others.  I also get the swelling in my ankles, but not bad.  I am trying to watch my salt, which I am supposed to do anyhow.

     I know how bad those swollen eyes can look, but its nothing to worry about.  I have been dealing with it for many years now.   My complaint is when I am putting on make-up its hard to do with the swollen eyelids.  Try the icepack.  I also get the big fluid bags under the eyes, mostly on my right eye because I sleep on my right side.  The pressure on the pillow makes it worse.

Susan

[Pin]

Thanks everyone, I'm obviously not alone on this one! It is annoying, but I'm realising it really isn't that bad in the big scheme of things.

I'm doing all the right things I think (the pillows, reducing salt, putting cold on them, exercising, and measuring on the scales) so hopefully it will just get a bit better where I don't notice it so much anymore.

Thanks again all! xxx.

[GerryL]

Hi Pin,

The only time I really notice the fluid retention is when it has sent my blood pressure up and my head feels like it is going to explode when I bend over to pick something up.

[Pin]

Ah yes - I have been getting pain in my sinuses and ears - I assume it is all the fluid since I don't think I have a cold...

[markmendonca]

y don't u ask to chang over to tasigna ??  something like that i felt fluided around my face in the mornning so what i did and it helped like night and day was sleep in a angal like in a 40% angal this helped big time     

[markmendonca]

try sleeping at a 40% angal it keeps the fluid down . works for me i hope u and everyone feels better