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Fluid retention on Sprycel?


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#21 GerryL

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Posted 08 August 2011 - 01:21 AM

Hi Susan,

Warm water is body temperature water.

I haven't tried this before, so will give it a go for a month to see if there are any benefits.

Gerry



#22 Tedsey

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Posted 08 August 2011 - 03:22 AM

Dear Pat,

Here is to the best results from the PCR tomorrow!  I go in for my bi-annual BMB.  Uggggh!  Anyway, I have been on Sprycel about a year.  I did not notice swelling around my eyes like Gleevec.  However, I started wheezing after a few months.  My onc heard it, but wants to ignore it for now.  It comes and goes.  Yesterday, I had a little trouble breathing and was wheezing loudly, but today I seem fine.  I have noticed I am getting fatter (body and scale), but I didn't notice the abdominal bloating until I started the pill in Feb.  It has been really bad. Not sure if all this is related to plural effusion, but if I have a bit of it, my lungs seem to be able to clear the extra fluid out.  So maybe a little plural e. is not such a worry?

I noticed too that so many of us suffer from anxiety.  It is always the anticipation of the sh**  hitting the fan that drives me into a total frenzy.  Like, I have been running around with the kids this last week like crazy.  After my biopsy, I won't be able.  AND, if it comes back bad, we will probably be looking for a donor.  Trying not to let it keep me up at night.  Hmmmm, it is 3:21 a.m.  Well, "try" is the word here.  My sister also called in crisis, so we talked for awhile.  But I find it is still hard to sleep the week before the BMB or while waiting for PCR results.  I get moody & irritable.

Wishing you all the best,

Teds



#23 GerryL

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Posted 08 August 2011 - 04:31 AM

Hi Teds,

Good luck with the BMB, sending good vibes your way.

Gerry



#24 lala

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Posted 08 August 2011 - 07:59 AM

Dear Tedsey,  We are all praying for you.   Wishing you all the best, Lala



#25 Susan61

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Posted 08 August 2011 - 12:25 PM

Hi Teds:  I just saw your post now, and you probably had your BMB already.  I know how you felt the night before the test.  I can only pray now that as they test your sample that all comes out okay.  Your so right about what we do to ourselves with the anxiety and waiting and the unknown.

I always say THE UNKNOWN WILL GET TO YOU MORE THAN THE PROBLEM ITSELF.  Once we get the results, we deal with it in whatever way we have to.  Let us know how your results are.  You have been winning this battle, so just keep doing what your doing.

Susan



#26 hannibellemo

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Posted 08 August 2011 - 12:38 PM

Wow, that was a world class hi-jack you guys! 

No indication of fluid retention at this mornings appointment, I actually lost a couple of pounds. Lungs, heart, etc. everything sounded good. Numbers good. The blood is on its way to Mayo and I should hear back in a couple of days. My work here is done!

Pat

P.S. I really like the lemon squeezed into the water! Don't know if it works as a diuretic for me but it tastes really good!

My two cents for losing weight, cut out processed foods, sugar and whites (potatoes, rice, flour, etc). Eats lots of fruit, veggies, protein and if you eat like this you don't have to worry about the fats! I lost 50+ lbs. in 2002 and have kept it off. Yes, I do have goodies on occasion. Atkins has gotten a bad rap in my book. Also, this is what Weight Watchers was like 30 years ago. Just saying...


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#27 Tedsey

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Posted 08 August 2011 - 06:32 PM

Sorry about the hijack Pat!  Maybe you already know this, but I talked to my oncologist's nurse today.  It appears that with pleural effusion, you usually have a cough and shortness of breath that won't go away.  Wheezing is not a part of it.  Just wanted to set the record straight. Glad your numbers are good!  Let us know how the PCR comes out.  I am rooting for PCRU!

Teds



#28 Tedsey

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Posted 08 August 2011 - 06:39 PM

And just a wee little hijack, but I promise to be good after this.  Thanks a ton for the good wishes Gerry, Lala, and Susan.  My onc was having a lot of trouble getting a core sample today, so she had to dig a new hole or dig around a lot or something (wasn't listening very well).  And I was saying a while back that the BMB was not all that painful for me with just local...  Ouuuch!  But not bad enough to scream.  Good thing I really love my onc.  I would have fired anyone else on the spot!  I was worried I would have to come back tomorrow.  Phew!  Glad it is over.

Teds

P.S.  Re getting fatter.  I find that the more I eat, the fatter I get.  Just cutting back helps me a ton.  But since I have been on the pill, I am ravenous and totally bloated.  Think I will try the lemon water too.



#29 GerryL

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Posted 08 August 2011 - 08:09 PM

Sorry Pat - hijack again.

Hi Teds,

Hopefully you get news that you've achieved or prgressed closer to MMR, then we can all do a happy dance with you.

Gerry



#30 Trey

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Posted 08 August 2011 - 08:09 PM

"What did Dela-wear, boys, what did Dela-wear?"

"She wore her brand New Jersey, that's what Dela-wore."

"What did I-O-Weigh, boys, what did I-O-Weigh?"

http://bussongs.com/...laware_boys.php

Hope this is helpful.


*No Moose or Buffalo or any creatures were harmed during this posting. 



#31 GerryL

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Posted 14 August 2011 - 09:36 PM

Hi Susan,

Interestingly - the lemon juice seems to be working as a diuretic, without too many trips to the john, too early to call it a major success yet but will update at the end of the month.

Gerry



#32 grrgrrugh

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Posted 20 August 2011 - 12:20 AM

I've also been experiencing what I think is flud retention from sprycel.  I was on it for several months last year, had a BMT in november, and my doctor put me back on sprycel a few months ago.  I've had several side effects, but a few days ago was the first time I started feeling really bloated in my stomach.  I've had literally no appetite for the last several days and feel really bloated like I'm full all the time.  I assume this is due to fluid retention.



#33 hannibellemo

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Posted 20 August 2011 - 09:01 AM

The fluid retention appears to be a side effect that might cycle for me. I haven't really had an issue with it since I posted this. I take the generic form of dyazide if I need it for fluid retention and it appears to work well for me.

Hope you continue to do well after your BMT. Have you told your onc about the bloated, full feeling? If not, it would probably be a good idea to touch base.

Good luck to you!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#34 grrgrrugh

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Posted 20 August 2011 - 12:14 PM

The sprycel side effects seem to cycle for me too -- pretty significant ones from earlier (stomach pain/diarrhea) havent occurred in a while, while new ones randomly appear.  Bizarre, but I guess that's how it works.

Yeah I told my doctor, but he didn't seem concerned that it was a big deal (which comforted me a little).  I have a regular appointment on Tuesday so hopefully I get more info then.



#35 grrgrrugh

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Posted 20 August 2011 - 02:04 PM

For the people advocating lemon juice/water, do you just have one glass in the morning, or do you keep drinking it throughout the day?

Also, does the fact that I have been burping a lot mean I might be retaining a lot of air too in addition to fluid?



#36 cleocans

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Posted 20 August 2011 - 02:46 PM

My water retention seems to have leveled out.  I had a few bad weeks where I couldn't fit into my regular clothes.  So I bought a few things 1 size bigger.  Lately, it has gone down and I can wear my regular clothes.  It is still there but just not as bad.  I still make sure I don't over do the sodium.



#37 GerryL

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Posted 20 August 2011 - 07:45 PM

I've just started the lemon juice regime - one glass in the morning. It seems to have helped with most of the fluid, particularly around the ankles. Though I also took a fluid tablet this week. Am hoping to get it down to where I just take the occassional fluid tablet when I need it - rather than having to take two or three a week.






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