Taxol and severe leg and arm edema

Elizabeth1959 · March 2011

Hi Group

I thought I would share my experience with edema following taxol. When I searched the message boards and internet when I developed this complication, I could find little information. I had dose dense A/C followed by what should have been 12 weekly injections of taxol. During week 11, I rather suddenly developed significant swelling of my feet, ankles calves, arms and hands. I gained at least 12 pounds and virtually stopped peeing. My oncologist decided to skip the last infusion: I had ultrasounds of legs to r/o deep vein thrombosis (blood clots), another muga scan to r/o congestive heart failure and lab work to r/o kidney failure. Tests were normal. The edema did not resolve so I took a medrol dose pack. This helped a bit, but the edema remained severe. About a month later my oncologist tried the following meds which did improve the situation substantially - prednisone, lasix, thiazide diuretic and potassium supplements. 3 months later, I am only taking the thiazide diurectic and edema is just about gone.

When you read the side effects of taxol it does say that 1% develop severe edema but that is the end of the information. I could not find any information regarding the cause, time to resolution of symptom or treatment. I would love to hear from anyone else who had this problem.

Elizabeth

nurseronda10 · March 2011

Elizabeth,

I have had a significant amount of swelling in my ankles, feet and hands. I just completed 6 rounds of chemo (Taxotere and Carboplatin) on Feb. 21st. Will continue on Herceptin until October. The swelling occurs around 10 days after each chemo and then the day I would get chemo would end up in bed for 5-6 days and it would go away, probably due to decreased appetite and having legs elevated. I did notice that with each chemo, the swelling would get worse. The second week after my last treatment I gained 14 pounds, so oncologist gave me Lasix 40 mg to take once a day as needed. I took it last week and it worked but now this week swelling is back, so took another Lasix this morning. I asked her if this was due to the Herceptin and she said no the chemo causes edema. She said it would just take some time for my cells to repair. I know I am impatient, but can't wait to start feeling like a real person again. I am due for another MUGA scan next month, so anxious to see if the edema could possibly be heart related.

ellenswa · June 2011

Dear Elizabeth, I just read your post dated March of this year and am anxious to find out if your edema symptoms from the Taxol started to subside after your last treatment. I too have been on Taxol since April 1st and was scheduled for 12 treatments. After treatment number 5 ,I developed extreme edema, pain and redness in my feet and ankles, so dose was reduced to 80%. By the end of treatment number 9 my oncologist made the decision to take me off the taxol entirely. That was on June 3rd. Here it is 10 days later and I am suffering worse than ever despite being placed on lasix 40 mg daily. The redness , swelling and pain has spread up to my knees now. I live with constant burning pain in my feet and ankles and spend most of my time during the day in the recliner with my feet elevated and am having to take pain pills every four to six hours. Please tell me there is light at the end of the tunnel and that your edema and pain (peripheral neuropathy) has subsided since you have been off the Taxol. If not, God help us both. My oncologist has not even looked at my feet , only her nurse practioner. Tomorrow is Monday . I have suffered all weekend. My feet and lower legs are tight and mottled in color with splotches of red and white, skin very shiny and tight. I am either going to hospital ER or try to get an appointment with my internist which takes weeks. In two weeks I am scheduled to have the metastatic lymph nodes removed from under my arm and my saline implant taken out. I am so fearful that this problem with my feet, brought on by the Taxol ,will delay the surgery and I want these malignant lymph nodes removed as soon as possible. I was a seven year breast cancer survivor when it suddenly came back in my axillary and subclavicular (collarbone) lymph nodes. Would greatly appreciate some feedback from you. Please tell me this edema and pain problem starts to go away after being off Taxol for awhile. I hope you are improving and will keep you in my prayers.

Thanks, Ellen

elinruby · August 2011

Just wanted to say that I've had this, though perhaps not as badly as some of you. It was however bad enough at one point that I thought I had somehow broken a bone in my foot, and so did the ER doctor who looked at it.The Xrays were negative, however.

My oncologist asked me if anyone had prescribed Lasix but did not offer to do so herself. I did not ask her to, as I wasn't sure what I thought of the idea. I asked the ER doctor and he said it's usually for patients with a heart condition and has some risks. I said meh, I don't have a heart problem as far as I know, so let's hold off at least for now. This was around treatment 9 of 12 (ACT).

The upshot of the ER visit was 1) They don't know anything about Taxol 2) after 2-3 hours in a bed my feet looked a lot better, so they discharged me with crutches and instructions to keep my feet up. They improve when I do but swell quite quickly otherwise; I came in to see if anyone else was reporting this, so thank you to all of you who did.

As my contribution I'll mention that putting ice on the feet, or the feet in ice, seems to help quite a bit.

thanks

Oh and I'm now 2 weeks past treatment 12, so woo-hoo on that.

JudithRaye · September 2015

I too am dealing with Severe Edema. I am on Abraxane (aTaxol) & Herceptin for supposedly 12 weeks but after 9th Chemo my legs and feet were so swollen and hurt so badly, they decided to give my body a rest and so only gave me the Herceptin... But the Edema has just gotten worst.. Legs are very heavy and so swollen and feel like ready to pop! I have instantly gained up about 10 lbs. Go back tomorrow for decision if continuing the last three Abraxane or not - my vote is Not! Until I can get this Edema down I just don't think I need any other side effects.. Even the upper part of my legs are swollen and very heavy and makes it hard to walk.. Thought of going to hospital one night and checking in...so not sure what is causing it.. But thank you sharing your experience with all this... Would love to feel normal again and able to walk without feeling like huge tree trunks from my groin down and feet and ankles not so fat and swollen... Help

Tobycc · October 2015

SO glad I found this thread: great advice! I do have a heart issue and take lasix: rarely do I get edema: if I do, it is from eating "regular" food: I eat 800 mg of sodium or less.

Last year in August discovered a small area of uterine cancer that was contained. MO/ surgeon both said hysterctomy is the cure-- no further tx as it was contained, etc. Had full one.

September started tx for TN BC and ended radiation in June. Hair even came back!

Labor Day went to Walk In that also has capacity for scans, etc. Pain in abdomen NOT tolerable, even with pain pills. Abdomen full of uterine cancer.

Tonight was my week off from Abraxene and carbo platin. After one, tumor marker went down 85 points. Started BC tx with taxol: after 2 or 3, had HORRIBLE burns on hands and feet. Had to stop. Tried taxotere. Same thing. But NED now.

I am down for 12. Did you all have a break after 3?

My legs are like yours. SO tight, itchy, shiny, feel like my skin is going to burst. Mo sent me straight to get a doppler for clot, but I knew I did not have one: I had the same thing with taxol. This is the best chemo that we ^{can do, and it is working. Dieuretics are not helping . Seeing doc Monday and will ask about prednisone and thiazide.}

^Kath

Taxol and severe leg and arm edema

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