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#1 dede5

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Posted 29 August 2015 - 09:24 AM

Yesterday evening, I noticed my feet and ankles were considerably swollen. That happens now and then, but by the time I went to bed, I realized both legs from thigh to toe, were very swollen and tight. There was no pain involved, but definitely uncomfortable. Has anyone else here had something like that happen? Of course, always wondering if things like this are side effects. It was a bit freaky, and I thought about going to ER, but decided to go to bed instead, hoping it would be better by morning. Better, yes; gone, no. 


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#2 Trey

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Posted 29 August 2015 - 12:01 PM

Edema (fluid retention) is certainly a side effect.  You are taking Sprycel which is the TKI with the most edema side effects.  Since this is an issue in your legs you will also want to monitor your lungs for edema, and if any signs such as shortness of breath, shallow breathing, etc occur go see your PC doc.  In fact you might want to get checked for this issue anyway.

 

Elevating the legs helps, which is why it improves over night.  But it may not subside unless you take a drug break.



#3 Antilogical

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Posted 29 August 2015 - 07:39 PM

I am on Gleevec, but I, too, have recurring bouts of edema. I'm on a "water pill", and my doc told me to minimize use of NSAIDs as they can cause water retention, but nothing seems to help.  I'm kinda stuck, as I have arthritis and Tylenol doesn't quite cut it.

 

I was somewhat amused at today's eye doctor appointment.  I was pretty puffy, and the doc recommended that I see a plastic surgeon to address my eyelids, which are now starting to impinge on my vision.  What if I have the surgery, then the edema goes away?  Will I look perpetually SURPRISED???


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#4 rcase13

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Posted 29 August 2015 - 10:37 PM

Yeah, you might end up looking like your avatar. Owls have big wide open eyes!

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#5 Billie Murawski

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Posted 30 August 2015 - 03:24 AM

DeDe, I have a problem with water retention, I take 20mg of Lasix everyday if I don't take it my nose runs I get a slight wheeze and I blow up. One time my fingers swelled for days  to the point my ring finger was turning bluish, I had to go to the jewelers and have them cut off. It cost more to have them repaired than they were worth, but it was the sentimental value. I have to keep an eye on my ankles and legs too because of my vascular problems. Twice I swelled up pretty bad and I had to have an ultra-sound done on my legs, so don't ignore it not everything is cml related. Like Trey said you might need a drug break. I've had a few breaks and it didn't affect my pcr at all. We all have to listen to our bodies it wouldn't hurt to get checked for a blood clot or high blood pressure, or diaflugus of the              endomotronitis!                                                           Billie



#6 Billie Murawski

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Posted 30 August 2015 - 03:36 AM

AL, Go for it, I always go around looking like "WHAT" usually it's because of Trey's explanations of cml and all things big and tall. And especially all of that Star Wars $#^@!.

 

Hey we're going to Ambridge the end of Sept for Ron's daughters wedding is the town still there?



#7 tiredblood

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Posted 30 August 2015 - 01:36 PM

Everything about me is swelled. Tried the Lasix, which certainly produced urine, but I remained swelled, so I just stopped taking it. Tried the compression hose and elevation of lower extremities too.



#8 pammartin

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Posted 30 August 2015 - 05:35 PM

I am having a problem with swelling in my feet and legs.  I have taken 120mg of Lasix a day for several days. As you mentioned it makes urine but the swelling is evident. I am also on supplements because I was losing more than I was gaining in the vitamin and mineral department.  They cut me back to 100mg and now at 80mg daily.  I never researched this, but does one develop a resistance to Lasix if used on a regular basis?  Is there anything else out there that is used for fluid retention? 

 

I used to  have horrible swelling around my eyes and face with the Sprycel.  I guess like everything else when you turn 50, it just sagged down to my feet. :rolleyes:



#9 Billie Murawski

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Posted 30 August 2015 - 10:47 PM

Pammie don't look at your knees, I didn't realize everything sagged, damn gravity.



#10 pammartin

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Posted 31 August 2015 - 07:06 AM

At least when I had swelling around my eyes , the crows feet and laugh lines were not visible. 



#11 dede5

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Posted 31 August 2015 - 09:27 PM

At least when I had swelling around my eyes , the crows feet and laugh lines were not visible. 

Pam, I've always been considered an eternal optimist. Wish I had said that  :D


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#12 Billie Murawski

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Posted 01 September 2015 - 03:24 AM

DeDe, Don't listen to her I've seen pictures of Pam and she has really nice skin

I looked like a racoon for 3 years, the swelling went down as soon as I went off Gleevac, but I'm still white all around my eyes. It's weird.



#13 pammartin

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Posted 03 September 2015 - 01:15 PM

DeDe, don't listen to Billie, I send her photos from 30 years ago. Don't tell her, she doesn't now because I had hats and sunglasses on.

 

Billie, we are weird.  Embrace the weirdness.  We somehow thrive on it.



#14 gerry

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Posted 03 September 2015 - 08:45 PM

DeDe, don't listen to Billie, I send her photos from 30 years ago. Don't tell her, she doesn't now because I had hats and sunglasses on.

 

Billie, we are weird.  Embrace the weirdness.  We somehow thrive on it.

 

Bit like online dating for some people when they use a photo from 20 years ago. lol



#15 OhNanna

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Posted 04 September 2015 - 01:11 AM

Thanks for the little giggle! My doc has me taking Prednesone for a little bit with the Gleevec...so my face is pretty round too! Pammartin hit it on the figurative head...with all this roundness or swelling the wrinkles aren't showing!

#16 Billie Murawski

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Posted 04 September 2015 - 01:14 AM

gerry, If I ever learn how to post a photo on this board it sure won't be a recent one. I have one from 15 years ago but I can't post it, I'm a computer idiot.



#17 Billie Murawski

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Posted 04 September 2015 - 01:18 AM

Oh Nanna, my face is round as a basketball and it's still wrinkled I'm doomed.






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