36 replies to this topic

[hannibellemo]

I'm riffing this discussion off of something mentioned by cleoclans in his/her (I assume her but not sure) first post. But first I want to welcome cleoclans:

Hi, cleoclans! Do you mind if I call you cleo for short? Welcome, I'm glad you found this site, I've found it to be very supportive and hope you will, too.

Now for my question. I've been on Sprycel for 22 months and find that my side effects cycle through. Right now I'm having the ones I hate the most - fatigue, blues, weepy, etc. It sucks! AND, I go in for my PCR tomorrow! Keep your fingers crossed for me - shooting for one year MMR or better!

This past month I've noticed I've been retaining some fluid too, other than the peri-orbital stuff. Before CML and before menopause I noticed I never retained fluid in my ankles, hands, etc. but it would always be in the abdomen with that bloaty, yuckky feeling. I've had that feeling recently. Dyazide takes care of the fluid, but I don't know if this a new side effect or if it's due to the really hot, humid weather we've been experiencing. I have a feeling that it's the drug and my well-honed sense of denial is just muddying the waters.

Since I'm anxious about everything at the moment (including the weird feeling in my left lower quadrant that I'm pretty sure is just intestinal motility but with a little imagination has become life threatening ) I've started thinking this could be the slippery slope to pleural effusion!

So, those of you on Sprycel, too, I don't remember much discussion on fluid retention. Are any of you experiencing it, where, and how have you handled it? I'll be bringing this up at my appointment tomorrow so I'll let you know if I come up with any solid information.

Pat

P.S. Since many of us appear to be anxiety prone I read this statement about anxiety recently, "Anxiety's like a rocking chair, it gives you something to do, but it doesn't get you very far." I'm trying to make a concious effort to redirect my energies elsewhere - it's an uphill struggle!

[cleocans]

Hannibellemo, I am a she, you can call me Kim or Cleo!  I haven't had any of the face swelling.  Just my abdomen and thighs and left ankle.  My left abdomen swells worse than the right side.  My Dr said it was normal and has not done anything for it.  I do find if I eat too much salt it gets worse.  So I am very careful with my sodium intake.  I am curious to what others have to say about this too.

Kim

[simone4]

Pat, sorry you are having troubles.  I believe we get the blues, weepies

in cycles no matter what TKI we are on. My onc always listens to my

heart, lungs and abdomen every 6 weeks at my appt. Your's will do

the same and he will listen for any fluid around your lungs. Hopefully

this will make you feel better about any possible PE. Hope all goes

well on Monday and that you maintain your MMR.

My feet and ankles have been VERY swollen this summer because

of the high temps as well as the moisture. Maybe I notice it more because

I look at them all the time. In the winter I have on socks, so I forget.

Take care.

Simone

[Marnie]

HI, Pat. . .sorry you're going thru a rough time, and good luck at your appointment.  I guess I'm pretty lucky. . .no fluid retention that I have noticed, and I LOVE salty things.  I'll take chips over chocolate any day.  I have noticed that I can't button my pants any more, but I think that's due to things settling as I get closer to the age of 50.  Wish I could blame it on fluid retention.

Let us know how your test results come out!  I'll be calling tomorrow morning to find out my PCR results from last week, so I'll be right there with you sweating bullets.

Marnie

[Susan61]

Hi Pat:  So sorry your feeling like this.  I will pray for good results on your PCR.  I do not know why, but we all go through that anxiety waiting for those results which in my case is every 6 months. Just got mine, so I will relax till January.   My GOSH!!!  Just everything that is happening around us with all the constant bad news will make anyone feel anxious these days even if they are healthy. I am not on Sprycel, but all the years I have been on Gleevec I still get the edema in my ankles, and the swollen eyes with all the fluid sometimes where they look like if you put a pin in  my eyelids water would  shoot out all over.

I also get stomach discomfort at times.  Do not think about Pleural Effusion.  ITs amazing  how we develop stomach issues from anxiety along wih the foods we eat.

I go through that weepy syndrome also.  Your not alone in all of this.  I drink a big glass of water with lemon juice in it, and it does keep me in the bathroom urinating a lot.  It just flushes out all the water that builds up in your system.  I found also eating some celery sticks helps me get rid of the edema.  No idea why, but it works.  I have a overactive bladder problem, so for me its worse when I try to flush out all the toxins and salt from my body.

        This hot weather and humidity is not helping as you said.  I am so anxious for some cooler weather.

        I just know your going to be okay. Keep us posted.

Susan

[hannibellemo]

Thanks to all of you for your support!

Susan, you made me laugh out loud with that vision of tears spraying all over, just like in the old cartoons! You've mentioned the water and lemon juice before, I'm going to try that because I just love citrus. I've also heard that celery is a good diuretic but I also think it's high in sodium so go figure.

Anyway, I will survive this, too, but it's nice to know that I've got a safe place to whine!

Pat

[reedgirl]

Just thought I'd add my two cents worth about Sprycel....this is the first drug my husband has been able to stay on and see results since his diagnosis in July 2010. He started on 50 mg in March then was bumped up to 70 mg in May.  His PCR test went from .3 something in January to 3. something end of April so Dr Talpaz felt it necessary to up his dosage.  By far the side effects on Sprycel have been the best to deal with.  His skin on his abdomen, upper arms, back and legs breaks out in what looks like teenage acne and just little red dots.  Dr said its all from the drug.  This is an unattractive looking rash, but at least its not itchy like the side effects from Tasigna.  His stomach is very puffy, round, and in the words of our 17 yr old, "humpty dumpty looking".  Dr says it's also from the Sprycel.  He's not very happy with this effect because his pants no longer fit, lol.  Dr Talpaz did mention something about watching for fluid retention later on, my thought is why later?  If this were going to be an issue wouldn't we already be having issues with it and how do they check for that???

I firmly believe Sprycel is the "magic pill" for Greg since his latest PCR test is now down to .1 something.  I feel like once you have a good response on this drug it just keeps working, although I know there are a few that maybe had their numbers creep back up.  I also feel like Sprycel is such a strong drug that it's just going to wipe the CML right out of his blood, well at least I hope so!  I pray it also wipes the CML out of your blood and keeps you at MMR!!!  Keep us posted, I'm anxious to see how you make out at your appointment, best wishes to you!

Audrey

[GerryL]

Hi Pat,

They also say if you're trying to loose weight to have a glass of warm water with a teaspoons of lemon juice in it first thing in the morning.

Gerry

[Susan61]

Hi Gerry:  Have you tryed the warm water thing.  I have to lose weight so bad,and I cannot get my head on straight to do what I need to do.  Also I have hypertension which has been pretty stable, and water drinking keeps my levels where they should be.  My problem is that I do not drink it all the time..

[lala]

Hi....I gained 40 pounds since getting cml.....the first year....I must have put on 30!  I am a very small framed 5 feet 4 inches.....was thin my entire life until the perfect storm:  menopause meets cml!  Have you all gained weight?  Lala

[Susan61]

Hi:  Glad I gave you a good laugh.  I think you needed it today.  It is the truth though about my eyes.  When I have to go out, and I want to put a little bit of eye make-up on I have to use the ice packs to get the swelling down.  When the edema starts to release from my eyes, my eyes run like I am crying.

I have to watch my sodium due to my hypertension, but for some reason that celery and water combination did the trick.  I am not thin.  I need to lose a lot of weight, but when I do the water drinking my ankles get so tiny.  My problem is that I think I am dehydrated a lot.  I do not like to drink most liquids especially water.  I have chronic kidney disease and overactive bladder.  If I drink a lot of water or ice tea, and sometimes I like Lemon Lime Seltzer then I just may as well stay in the bathroom with the constant urinating.  If I go out, I am looking for the nearest Ladies Room wherever I go. My friends and family cannot believe how much I run to the bathroom.  My big problem is I am a big coffee drinker. I love my coffee, and I should cut back on that too.

[Susan61]

Hi Lala:  I just sent a message to Pat about my water drinking and I mentioned my weight gain.  I have always struggled with weight since I was very young, but I did gain well over 40 pound when I started the Gleevec.  It was like overnight, and then I started to have emotional eating issues with just my everyday stress with CML on top of it, and I gained even more.  I have not been able to get myself in gear to lose this weight.  When I do try, it just will not budge.  My doctor told me that even if I can lose some of my weight that I will probably hold some of it from the Gleevec.

I am only 5 feet 3 inches, and my husband thinks I am shrinking from getting older. He swears I am shorter than 5 ' 3"

I would love to hear from others who have gained weight from  their drug or just from nervous eating like me.

[lala]

Hi...I will start a new thread......

[Susan61]

Go Ahead!!  I was just going to do the same thing regarding weight gain, even if it is not stricty from the drugs.  Could be a good topic for many to get involved with.

[cleocans]

Hey LaLa, I haven't gained any weight besides the 4lbs of water weight.  But I have only been on Sprycel for a little over three weeks.  I do eat really healthy though and probably more so now.  Hoping to get back to running and working out when my Dr gives the go ahead.  My eyes are already big, so I'm thankful they haven't swelled.

[GerryL]

Hi Susan,

Think I will have to start the lemon drink tomorrow - I had alrady started storing lemon juice (from my lemon tree) in the freezer in ice cube trays - just hadn't started it yet. You need to drink it straigt after you get up, so I just need to get into a routine. Celery seed has been my friend for the Gleevec muscle spasms, but didn't do much for the fluid.

[Susan61]

That sounds so refreshing with lemon ice cubes, and having a lemon tree also.  How do you use the celery seed?  Do you just sprinkle it on foods?

The actual stalk of celery could be different, but I do not know how.  I will have to try that first thing in the morning.  Do you drink that before you have coffee or anything else to get it working in your system?

[Susan61]

I think you had said warm water, so if you use lemon ice cubes will that defeat the purpose.  I will try warm water with the lemon juice.

[GerryL]

Hi Susan,

You are supposed to drink it when you first get out of bed - in a glass of warm water. So the water I use will need to be hot to take the chill out of the lemon icecube. You can get the celery seed as a supplement in tablet form. I know it is also available loose, but it is easier for me to take it as a tablet.

Gerry

[Susan61]

Thanks I will try to remember to do it tomorrow morning.  Have you done it yourself, or do you know anybody who has done this with success .