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#1 cleocans

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Posted 26 February 2012 - 09:25 AM

I'm tired of dealing with this water retention.  I've had some bad days where I had too much sodium and put on some more water weight.  Since my next onc appt isn't until April, should I leave a message with my onc asking about diuretics or should I call my PCP and make an appt with her?

Thank you,

     Kim



#2 pammartin

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Posted 26 February 2012 - 09:56 AM

Hi Kim,

I ran into a similar situation, but with a different problem.  I called the oncologist, thinking I had to work through them because of the CML, and they called me back stating I needed to call my PCP about my problem.  I find it difficult trying to figure out who I call for what!  I have read many reports of oncologists prescribing meds for water retention, and since it is seems like it is directly associated with your CML, I would call the oncologist first.  I am sure you will have many credible suggestions shortly for your question.  Good luck with the water retention and keep us posted on how it is going.

Pam



#3 GerryL

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Posted 26 February 2012 - 07:41 PM

Hi Kim,

My specialist originally prescribed the diuretic and I get ongoing scripts from my GP. What you could do is just put a call into your oncologist and ask for a recommendation then get the script from your PCP.



#4 jrsboo

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Posted 26 February 2012 - 10:11 PM

My onc prescribed the lasix and accompanying potassium, and she monitors me.  But they are checking every other week again due to some other stuff that is going on with extremely high cholesterol (probably due to unrelated kidney disease), gee, isn't this fun?

Caroline



#5 Judy2

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Posted 27 February 2012 - 12:16 AM

Hi Caroline,

How often do you take Valtrex? From what I have read it can really affect your kidneys. After two weeks on the Valtrex I noticed I wasn't urinating as much so I have stopped it for a couple of days (my shingles have healed) and will resume it at a reduced dose. If you have kidney disease the Valtrex dose has to be adjusted accordingly, that is very important. I'm hoping you have a nephrologist.

Judy



#6 jrsboo

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Posted 27 February 2012 - 01:26 PM

I stopped taking it a couple of months ago.  Just too many freakin pills per day.  And it was just as a precaution, so that any flare would be lessened.  But I haven't had a flare in over a year, so off I went!  happier now, but I think the kidney issue is separate.  Neither my onc nor my nephrologist seems to have any concern with the valtrex.  I am leaking protein, so there is kidney disease of some sort. 

Caroline



#7 cleocans

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Posted 29 February 2012 - 01:18 PM

Thanks everyone for the replies.  I called and left a message for my onc.  Her nurse called back and let me know that my onc was gone for a month but would tell my problem to one of the other oncs there.  He prescribed me Lasix.  I am hoping it helps!



#8 pammartin

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Posted 29 February 2012 - 03:57 PM

Best of luck, although I do not have serious water retention difficulties with Sprycel, I have had them in the past and Lasix did a great job.  Hope it makes a huge difference!

Pam



#9 GerryL

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Posted 29 February 2012 - 08:05 PM

Make sure they keep an eye on your potassium levels once you start taking the lasix.



#10 luvmybees24

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Posted 08 March 2012 - 01:13 AM

UGH! I know! I get HORRIBLE water retention the week before my period but only since I've been on Tasigna. My ankles are huge, my stomach puffs out, I just feel like a WHALE (and I'm ALREADY obese so like I need this) I take Lasix once a day and it barely helps but helps somewhat. I hope you get answers!



#11 cleocans

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Posted 08 March 2012 - 08:08 AM

I don't think my diuretics are helping much either.  The first two days on them I lost a pound each.  But have since gained those back and added an extra 1.5 pounds.  When I take it I don't have to pee a lot anymore like the first two days.  I am also wondering if something else is going on.

Kim



#12 GerryL

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Posted 08 March 2012 - 06:38 PM

I don't find the fluid adds that much extra weight for me - I mainly take is as it either makes me feel uncomfortable around the ankles or has sent my blood pressure up.

Not sure if the TKI can slow down your metabolism, I'm watching what I eat and increased my exercise level, but haven't lost any weight, though have come in another notch on my belt, so maybe I'm putting on muscle mass as well.



#13 cleocans

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Posted 08 March 2012 - 07:15 PM

It seems that TTOTM cancels out the effects of the diuretic!  The pills seem to be working fine today.  I also work out.  I lift weights 3 times a week and run 2-3 times a week.  My pants have not gotten looser though, only tighter.



#14 GerryL

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Posted 08 March 2012 - 08:50 PM

Can't do much about those hormones LOL I figure I bloat up for a day or two before hand.






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