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Water Retention & Imatinib

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Hi All,

Ive been on Imatinib for the past 8-9months and I’m experiencing edema (getting worst) for the last 3-4months, causing a sudden increase in weight. I practically gained 4-5kg within 5-6months time frame. I’ve not change much in terms of diet.

my doctor has start prescribing me water retention medication. Since diagnosed with CML, I started with only Imatinib. Then the uric acid increase and I was put on allopurinol without any indefinite date on when to stop this. Now with this edema, here it goes with another new medication... from 1 pill, now I need to take another 2 more. Is this usual? That our list of medication gets longer and longer( more and more)? Any idea what’s this water retention indicate? Is my liver or kidney not functioning too well? Of course I have about really soft stools every other day (similar)...

 

hope someone can can shed some light...

 

thanks in advance..

John/Jacq

Hi John / Jacq

I started on imatinib on 2 May after switching from dasatinib and, like you, I have to take so much medication that I rattle when I walk!  Currently I am on the following:

Imatinib 400mg to control CML

Folic acid for energy

Curcumin (as suggested by other members of the forum to assist with the working of imatinib)

A diuretic

Salt tablets to go with the diuretic

An anti-histamine to control allergy to imatinib

Corticosteroids to control a rash from imatinib

Magnesium supplements

I guess this is our life from now on!

Good luck and strength to you

Martin

Hi John / Jacq

My husband also feels he has become such a pill popper since getting CML so would surely sympathize with you. The good news with allopurinol is that you should at least be able to reduce the dosage as your Uric acid returns to normal. My husband’s was sky high at diagnosis - the CML was diagnosed because of a prolonged severe gout attack but now he takes a v low dose and I know this pill can be taken for years with no side effects I believe.

He also suffers from swelling but only around the eyes tho he is very conscious of this. Reducing the dosage by (Alf has helped a lot but it still seems to swing by on a very regular basis. 

He is also taking Curcumin ( 5 x 1000mg) but is actually happy to take those as he feels it’s a good positive addition for his general health as well as the CML. 

I hope your onc will listen to your concerns and come up with some suggestions. 

Best wishes Louise 

 

 

 

Hello Louise,

Doctor has also half my dosage for Allopurinol since my uric acid level has stabilized. I’ve also gained some weight and feel kind of bloated and lately not much eating appetite...

ive not started taking the diuretic pills yet as doctor said it might lower my blood pressure and cause fainting...

are there any other alternatives for the water retention reduction? Does exercise help? 

By the way, how does curcumin help us? 

 

Thanks in advance...

 

Hi Martin,

 I’m also taking the below:

CML/ medication:

Imatinib 400mg

Allopurinol

Diuretics ( going to start soon)

supplements to go with CML medication:

calcium

folic acid

i still take vitamin C daily for general health

 

Hi there 

I am no expert on water retention but if you search this site, you will find some older posts on this topic. I hope they will help. 

If you google cancer and Curcumin it’s shown to have positive effects for many cancers. Its also good for inflammation. Heart health. Others here recommended it and so Paul takes 5 mg a day. I think his color has improved and we hope it’s helping with the swelling he gets around his eyes. 

Exercise is definitely a good idea. 

 

Best of of luck to you. 

Hi John / Jacq

I guess we have become like a walking dispensary!  We take one thing to control one problem and this causes another problem that needs a different drug.  Ah, the joys of being a CML patient...

Just a comment on the allopurinol:  surely you won't be on it forever?  As I understand it, once one is first diagnosed and these drugs start taking effect, the white blood cell count drops dramatically, creating extremely high levels of urea in the bloodstream.  This can cause gout and the allopurinol stops that from happening.  

In my own situation I was on the allopurinol for about 3 months.

I hope this helps.  Best wishes

Martin

With regard to conservative treatment over drugs ... the following can help. Lift your feet above the height of your heart as you lie down.

Exercise your feet. This helps the fluid get better from the feet to your heart.

Follow a diet low in salt, which can reduce fluid build-up and swelling.

Select special socks or stockings sold in most pharmacies and medical supplies stores.

When traveling, take frequent breaks to stand and walk.

Avoid wearing tight clothing or garters around your thighs.

Try to lose some body weight if needed.

Hi John,

I've been on Gleevec 400 mg. since 2012. I've had a complete molecular response since 2015. Watch your Creatine and eGFR numbers closely. They can be a sign of kidney issues. Going to stop Gleevec soon and hope for the best. Good Luck.

Barry

JaqJohn - Your course on Gleevec is familiar to a lot of us, including me.  I was alarmed at how completely different I felt, almost immediately, on Gleevec.  I, too, was given allopurinol, but that's a standard sort of protection given early on when there is expected to be a lot of "tumor death" - it helps your body get rid of the dead bodies!  I will caution you, however, that the combo of allopurinol and diuretics plus Gleevec's own (now well-known) effect on the kidneys, caused my creatinine level to rise (and BUN).  There is literature on this and it is well-acknowledged.  A nephrology consult didn't turn up anything except this odd and supposedly benign effect of Gleevec, but the doc most certainly stopped the diuretic.  (The allopurinol had already been stopped, as is usual.)  But as a consequence, and on the subject of adding pills, it was found that I had secondary hyperparathyroidism from this high creatinine, and now have to take Vitamin D3 and Calcitriol forever.  So, just be aware of this and make sure you note your creatinine level on your next CMP.  Also note your BUN and GFR on the CMP.  

One thing I must add.  It is a common misconception that the diuretics help with Gleevec's edema problem.  They really don't.  You don't have "too much fluid" exactly; it's more that the interstitial cell fluid balance (the "in" and the "out" of the cell walls) is affected by PDGFR in Gleevec (among a few other kinases that are off-target hits by the Gleevec).  So, all you are going to do with a diuretic is overwork your kidneys and visit the bathroom a lot. It is true, however, that it seems you can make the edema worse by eating a lot of salt.  The pure, hard, sad fact is:  You will never rid yourself of this problem completely as long as you are on Gleevec, particularly the periorbital edema.  Reducing the dosage definitely helps, however, so maybe that will be in your future.  Better yet is to switch to another TKIDasatinib, for instance, even though it too hits PDGFR, somehow it's either a lessened hit or a different kind of hit, because it's usually night and day for people and their toad eyes.  Was for me!   At any rate, people report that Tasigna (even though it is similar to Gleevec in its makeup) is better on the edema, dasatinib is even better than Tasigna, and now we're sometimes hearing that Bosutinib is the best, on this particular side effect.  Good luck!