14 replies to this topic

[hannibellemo]

Hi, all,

I have read over the past 3 years just a few other people mentioning swollen feet/foot ankles/ankle as a pre-diagnosis occurance. How many of you noticed having this?

I definitely did, my right ankle was more swollen than my left. Of course, I wrote it off to something else at the time and I believe the swelling disappeared before I was actually dxed 6 months later.

Does anyone know why this may happen, what causes the swelling?

Pat

[Susan61]

Hi Pat;  I never heard of the swelling in the ankles.  Maybe being yours cleared up before you were diagnosed was just too much salt in your diet.  The only time I had the bad swelling in the foot and ankle was when I had the blood clot in my leg.  I am not supposed to have salt, but if I have something that is processed I have had that problem. We are all different in how we get things or why.  Hope your doing good.

[hannibellemo]

Hi, Susan,

That is what was so weird about the swelling - I don't retain fluid - never have. I remember my doctor telling me the day I left Mayo that I would probably lose my "ballarina ankles" when I started Gleevec - the only swelling I experienced was peri-orbital and that was light. 

I theorize the swelling has something to do with the increased pressure from the enlarged spleen. I'll ask my onc when I see him Friday.

I hope to start Sprycel at 50 mg. this weekend. I've been asymptomatic for a couple of weeks but my last x-ray on the 18th still showed more fluid than just "blunting" of the tip of the right lung. I'll get another this Friday, please keep your fingers crossed for me.

Pat

[Susan61]

Hi Pat:  Please excuse my brain fog, my brain has been on overload.  I completely forgot about the problem you were having until you just reminded me.  I have the constant puffy eyes with the Gleevec.

     I do not know how I lost track of your problem with the Sprycel etc.  I will keep you in my prayers on this next x-ray.

    Its always something that one of us is going through, and its great that we all have each other.  Everyone reacts differently to each TKI.  I always worry that I will have to go off the Gleevec, because in the long run it has been good to me.  I had a drop in my platelets this past test, and I was concerned.  I always keep an eye on them, and thats why I always make sure I get copies of every report in case the doctor overlooks something. 

   Please post to us when you get back from your Friday appointment with a update.

[Marnie]

Good luck, Pat.  I hope it clears up soon. 

Marnie

[Rissa]

My ankles used to swell up, but I don't think they have since I started on gleevec.  Maybe it was a symptom. 

[kellbell]

I had alot of swelling in my feet and hands last summer.  I was dx in feb this year. Sorry to hear you are having trouble, I hope things are getting better.

[Lizzybee]

I had the swollen ankles, and I'm certain it was a symptom of the leukemia because it's decreased since I've been diagnosed and treated, I'm very healthy other than CML, and I've never had swollen ankles other than during pregnancy and during the six months before I was diagnosed with CML.  I wonder if it's related to night sweats; I know that night sweats are a pretty common symptom of leukemia; maybe it's the body's attempt to get rid of the retained fluid.  The lymph system drains fluids from the body, and the lymph system is affected by leukemia as evidenced by swollen lymph nodes, so I'd think that has something to do with the fluid retention.

[Judy2]

Hi Pat,

Praying you can start your Sprycel, hoping all works out for you.

Judy

[GerryL]

Hi Pat,

Good luck with the lower dosage.

[Trey]

Pat,

Regarding the cause of the swelling, white blood cells rush to any site of inflammation.  When there are so many WBCs in the blood, too many will crowd into a site where there is inflammation, even a mild amount.  You likely had a very slight ankle twist or ligament pull or something generally innocuous, which should not have swollen, but then the large numbers of WBCs flooded the location causing much greater swelling than normal. 

[auntquack]

Hi,

Swelling of the ankles was the only sign that something wasn't right before I was diagnosed. I was working two jobs at the time (mostly sitting) and by the end of the day my ankles were noticably swollen. My left was worse than the right and I was concerned about something being wrong with my heart. After diagnosis I asked the onc about the swelling in my ankles and he said my body was not able to get rid of the excess white blood cells so they were pooling in my lower extremities. That sounded reasonable to me. The swelling subsided after I started Gleevec.

[katiekatjacob]

Hm, it's an interesting thought experiment! I guess I never kept track of when I have swollen ankles...how swollen were yours prior to diagnosis? Were the joints stiff as well? how long did it take for the swelling to go down?

[auntquack]

I don't remember having stiff joints but the swelling was enough that when I took my shoes off there were deep indentations on my feet. They would be somewhat better in the morning but then would go right back up by evening. The bones in my ankles were not really visible so they were pretty swollen. Now I get swelling when I sit for long periods but you can still tell that there are bones in my ankles. I can't remember how long it took for the swelling to go down. There was so much going on that I didn't notice that part so much. I had some pretty bad bone pain in my upper legs when I started taking Gleevec and a lot of other side effects so the swelling wasn't what I was noticing the most.