Water retention after steroids and chemo

husker · January 2016

I didn't have lymph nodes removed so my water retention is not due to that but significant nevertheless. I gained about 14 lbs and my legs and arms are so puffy I look like the Pillsbury Dough Boy!!! My doctor keeps saying this is from Taxotere and Steroids and will go away in time, but my skin actually hurts its stretched so tight and it hurts to walk or move my arms. My feet look like I have baseballs around my ankles. I've read I should keep my feet up then I read that I need to do exercise to move the fluid. Which is it? Does anyone else have this problem?

EstelaLorca · January 2016

Hi Husker,

How many rounds of chemo have you had? I remember when I was towards the end of my treatment I was retaining probably the same amount of water as you(but I didn't know it at the time). I thought I had just gained weight and that this is my new body. I'd go for long walks when I felt better, luckily it was in the summer so I could go outside and wear sun dresses and feel comfortable (I live in Winnipeg Canada). I did drop the water weight in the end, it probably took 1 month and a bit after treatment if I remember correctly. I recommend walking, if and when you can. It helps at so many levels.

Opt4Life · January 2016

Yep, right there with you on the weight gain after only 8 weeks of Taxol and steroids. Looks like I about 12-15 lbs gained.I have been doing some comfort and holiday eating since diagnosis though so that's partly to blame; and instead of 6 days a week of hard workouts, I am doing 4 days of light to moderate workouts since starting chemo. But I have noticed that my face, hands, ankles and legs are puffier so its good to hear that this water retention will begin to lessen once chemo is done.

SpecialK · January 2016

Just want to point out that systemic swelling is not Lymphedema - you might want to ask the mods to move this post to the chemo topic so there is no confusion to a newbie reading. Taxanes do indeed cause body-wide swelling, particularly in the extremities, and this is very common. I could not wear most shoes and forget about wearing rings. You might inquire about using a diuretic (I was prescribed Triamterene at 1/2 strength) that does not stress the kidneys too much to help with elimination of the fluid, and also watch your salt intake. I stayed on a diuretic for about a year, then was able to wean off and not have the swelling come back. Is your blood pressure normal, and have you had any cardiac screenings - changes in both could indicate a more serious issue beyond regular fluid retention.

Anonymous · January 2016

Hopefully, you have a good relationship with your MO and can tell your doctor that you are 1)uncomfortable to the point of being unable to move easily, and 2) you need some relief from this condition. Swelling is alleviated by elevation and then moving around as much as possible every hour. As well, double up on your water intake. Often our bodies hang onto extra fluid when a bit dehydrated. If you can send your body a signal that it's getting enough water regularly, then it will let go of the water it wants to keep.

But I'd first get serious with your MO.

Good luck. Agree with SpecialK that this is not a lymphedema post and should be moved, where you will get more feedback.

husker · January 2016

I have just completed 6 rounds about 1 month ago but will continue on with Herceptin until August because I am HER2+. It sounds like what I'm experiencing is fairly typical. Because I am on Herceptin which can challenge your heart, I receive echocardiograms every 3 months and everything is working perfectly there so we know the swelling and water retention is not cardiac related. My MO is not crazy about diuretics - neither am I, don't need one more drug entering my body, but if I have to go to that I will, he is leaving it up to me to decide based on my tolerance. For now I think I will focus on the physical therapy to help move the water out, drink more water so that I am not dehydrated and inadvertently storing it, and have some patience.

SpecialK · January 2016

husker - I was also Her2+ and on Herceptin, and had quarterly echos. I had no cardiac issues but could not control the swelling without the diuretic. I think it is a good idea to try without using a diuretic, but know that it is an option should you need it. My MO chose the drug he did so that it would have the least impact on my kidneys, which had already been challenged by chemo. I felt so much better on the diuretic it was worth taking another pill in the short term. I live in Florida and the heat and humidity (I ended chemo in June of that year) made controlling the swelling problematic.

husker · January 2016

Thanks SpecialK I feel better just knowing I'm not alone. I have an appointment next week and will discuss options with my doc.

Freakedout4sure · February 2016

Just jumping in, I finished 4 rounds of TC on January 11 and was also retaining fluids from the chemo and the steroids - I did start a very mild diuretic to help try to get rid of the baseball ankles - it has helped - I am now 1 month post my last infusion and my doc said to give it 4-6 weeks before I go off the mild diuretic - 2 more weeks to go on that - I can see that my pants are finally fitting better and my face is starting to slim down slowly. I am hearing this is not lymphedema but a reaction that some have from this treatment.

All the best ladies, hang in there!

hugs, Sandy

Frill · March 2016

Just throwing this into the mix, at our hospital the lymphedema therapists are noticing a lot of their PT patients developing lymphedema while on Taxol. I am super prone to what I call "brick feet" and haven't had any problem with that, but even though I'm "the most compliant patient" re exercise, massage, diet, blah blah blah, the swelling in my hand (not fingers, just hand) refuses to subside. I haven't gained weight on Taxol, but I'm drinking a gallon of water a day, so that may be flushing out everything.

Kicks · March 2016

All edema is not LymphEdema! There are MANY potential reason for systemic edema (phat pheet, kankles, etc.) that have nothing to with LymphEdema related to breast surgery (any surgery or trauma). LymphEdema is very specific and does not respond to diuretics as the lymphatic system is impaired/non-existant in areas post surgery. Heart/kidney/etc. issues can/will cause edema in extremities and duierics can help to remove the edema in areas where the lymphatic system is not impaired.

Unfortunately - most Drs are not knowledgeable about LE. Most PTs or OTs aren't either unless they have had additional education.

Hopefully this tread will be moved to the Chemo Forum for the edema issues that are not LE for more experiences with general edema.

Binney4 · March 2016

To the extent that edema from chemo overloads a lymph system that is already compromised by surgery and/or rads, it can contribute to triggering lymphedema. So while the two are not the same, it can be difficult to unravel what exactly is going on. In that case a visit with a well-trained and experienced lymphedema therapist can be really helpful--and if lymphedema is present, it can give you a much-needed head start on getting everything back in control.

Be well,
Binney

Water retention after steroids and chemo

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