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Swollen ankles and legs

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Forum Name: TNBC Metastasis/Recurrence Users
Forum Description: A place to discuss metastatic disease
Printed Date: Apr 06 2020 at 5:05am
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Topic: Swollen ankles and legs
Posted By: Priory100
Subject: Swollen ankles and legs
Date Posted: Feb 04 2013 at 7:08pm
Hello everyone

Just wondered if anyone has had problems with swollen legs ankles. I find it quite difficult to walk at the moment because I feel that my legs weight a ton. This is only a recent development, and I was told in the hospital today that because my lymph nodes were diseased that I would be carrying more fluid around. Their only suggestion was to keep my legs elevated when I am sitting down, which I do. 
I am on a trial at the moment and I wondered if that may be a side effect, but when questioned about that they said they very much doubt it. Any feedback would be helpful as it is a real nightmare. Thanks  and hugs to you all x

Posted By: Natalie
Date Posted: Feb 04 2013 at 10:30pm
I don't know if it is relatable but I got swollen ankles when I was in treatment. I would rest at night and the swelling went down. Of course once I got up and moving around it was back. 
Food for thought, just about everything I brought to the NP, she told me "really? I never saw that or heard that before" until I came to this group and it was all validated for me.


TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg

Posted By: Boo
Date Posted: Feb 04 2013 at 10:53pm
Priory100 I have had swelling in my feet and ankles and the following things help me.  I exercise walking or biking or whatever I can do.  I think it is good to keep moving.  Second if you are sitting raise your feet as comfortably high as you can.  Point your toes and then your heels.  It is like pumping your calf muscles.  You can do this in bed, at the sink, brushing your teeth etc.  IN the morning put on support knee highs or stockings.  I have over the counter ones and professional ones.  There are months I wear them and others I do not.  If you are going to be on your feet standing or doing excessive walking wear them.  Cut out all salt.  I never add salt (perhaps the odd dash on an egg).  Avoid salty foods.  Massage your legs pulling from you ankles towards your knees.  I do this with my legs up.  And lastly we need to keep a healthy weight.  Other than this, I do not know.  There are medications but I have never tried them.  Good luck. I hope you get some relief soon.  Anne

dx 12/2010 age 50 TNBC 12 X 9 cm tumor 1 node, 3 X FEC 9 X Doxitaxol with concurrent rads - 2X3 cm residual tumor 20/1/12 mets in lungs METMAB trial May 7 to Oct. 21, CHK1 /Gem trial 26/12/12 fails

Posted By: SagePatientAdvocates
Date Posted: Feb 05 2013 at 12:03am
Hi Priory, 

Please get thee to a Lymphedema Specialist. What you are describing needs to be attended to, immediately, by an experienced lymphedema specialist. 

Here is a link that you may find useful-" rel="nofollow -

The problem is that I am not sure who is excellent on the list. Your oncologist or GP may be have some information or referral? 

Generally the palliative care people (as in supportive care services not hospice) may be knowledgeable about which lymphedema specialist is excellent. Is there a palliative care unit within the hospital you were treated at who might be a good resource for a referral.

good luck and please try your best to get some help as soon as you can.



I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates

Posted By: Grateful for today
Date Posted: Feb 05 2013 at 12:48am

You mentioned ........problems with swollen legs ankles. I find it quite difficult to walk at the moment
because I feel that my legs weight a ton. This is only a recent development......
And that....Their (the hospital) only suggestion was to keep my legs elevated when I am sitting down...

I am not a physician.   I am not giving you advice.
Some thoughts did come to mind. I wanted to share them for your consideration.
      It sounds like the swelling may be moderate/large and not just mild/slight.
      If the hospital gave you the plan to keep your legs elevated after a thorough evaluation of the
             swelling,   great.........and disregard the following.
       I would assume with moderate/large swelling in a person on a trial drug with a history of E (think
            another of your posts had you had E (epirubicin),    an evaluation maybe somewhat like the
            following would have been done:
                    lab work: chemistries including kidney function BUN/Creatinine and NA (sodium).
                    heart echocardiogram   (due to history of E )
                    If any shortness of breath, a CXR.
                    If there is any question of a blood clot, testing to rule that out.
                    confirmation that there has been no significant weight gain.
                    (Realize all the above may be normal......and that is what one would hope for.)
      If the above were not done, you may like to consider calling your oncologist and asking again for
          a full evaluation of the swelling.   If you are told, none is needed, consider calling your primary
          medical physician for evaluation of the recent development of swelling.
Sometimes, swelling can be a situation where elevation is all that is needed.   
       (and other things like Nat and Anne posted after checking with one' s physician.)
Sometimes, swelling can be a symptom/sign of another condition which needs a specific physician's
          treatment plan.
I tend to be a cautious person. I do not wish to add any stress to an already stressful situation.
It can be hard to appreciate swelling without seeing it. So, what I have posted may be too cautious.
     In my opinion, from what you said it does seem reasonable, to have a full evaluation of the swelling.

With caring and good thoughts,
Grateful for today............Judy

While writing my post, the above post was added.
If you have not had a full physician's evaluation of the swelling, after you do,   
a referral to a lymphedema specialist may be part of the plan after other causes are ruled out.

Posted By: krisa
Date Posted: Feb 05 2013 at 1:20am
Did you have lymph node removal in the groin/ leg area? That could be a cause of fluid buildup in your legs and ankles
Hope you find the reason and a solution. Take care..

Posted By: Priory100
Date Posted: Feb 05 2013 at 3:55pm
Hi Nat

That is more or less the same as me, when I elevate my legs the swelling does go down but not completely. I have had to buy myself a pair of shoes a half size larger and extra wide fitting.  I will chase them at hospital to ask if it can be looked at.

At the hospital I had a few people  look at my legs, and they said they were not too concerned about them. Looks like I will have to push a little harder.

Posted By: Priory100
Date Posted: Feb 05 2013 at 4:09pm
Hello Krisa
I did have 13 nodes removed under my arm when I had my mastectomy. This was on my left side, so I would have expected the swelling to only be on my left side. Perhaps that is a misconception on my part. One way or another, I will get to the bottom of this


Posted By: Priory100
Date Posted: Feb 05 2013 at 5:01pm
Thank you for some very good info. I have had some breathing problems , but this had occured prior to treatment, and a few of the meds I am on highlight this as a possible side effect. I also have pleural effusions on both lungs, and if drained, could possibly make a difference. I know what you mean about dragging ton weights around. I have to take such a long time to climb the stairs in my house and even sometimes need to get someone to lift my legs up to get them on to my sofa.

I, also am a cautious person, but have found the support and understanding on this site absolutely wonderful, and find that speaking to you all gives me comfort knowing that you understand the emotions that we go through. We are all on the same journey.

Hope your situation improves for yourself. It is very hard to deal with immobility.Hope you get some relief soon

Thank  you so much
PS I will ask for a full evaluation and hopefully they will allow that, Because our medical care here is free, we dont always get the things we request. 

Posted By: Priory100
Date Posted: Feb 05 2013 at 5:18pm
Thanks for your advice. I realise that exercise can help this condition, but at the moment, I have problems just climbing the stairs. I am trying to move around as much as I can, but walking any distance is very hard, and for the first time today, I used a wheelchair to go shopping. It made a great difference to me, as otherwise I would not be able to go anywhere except the hospital. the flexing of the feet however, is, and I will do that from now on. I do try not to take too much salt as well, but will make that less. 

Thanks for your help

Posted By: Reetz
Date Posted: Feb 06 2013 at 2:47am

    I developed swelling in my legs and feet from Neurontin, given to me for relief of neuropathy. It went away as soon as I stopped taking it.

Posted By: DianeEE
Date Posted: Feb 23 2013 at 10:06pm
I have had swelling in my ankles and feet which does resolve overnight too.  My sister is a lymphadema specialist and I had her look at them as well as my onc.  I think that lymphadema is typically an issue in the limb adjacent to where you had lymph nodes removed.  So, like someone above stated, it might be an issue if you had lymph nodes in your groin area, etc.  But, it's always a good idea to rule that out.  My sister recommended the over the counter compression stockings and my onc. prescribed me Lasik (sp?), a "water" pill for when it gets uncomfortable.  Elevation and movement both seem to help me.  VERY interesting, Reetz, is that I am on Neurontin for nerve pain in my chest area.  I never made the correlation between the 2 but I will ask my pain specialist about it.  It hasn't been severe enough to do much about it.  So, I hope it doesn't get worse.

DX 11/2010 age 43,BRCA2+,6 rounds TAC,bx mast/ovary removal 5/2011,TNBC tumor 5.1 cm,02/14 nodes positive,37 rads,Cisplatin&PARP trial.Recurrence 2/2012,TN IBC,Abraxane didn't work, Ixempra & Xeloda

Posted By: hahannah
Date Posted: Jan 19 2020 at 9:25pm
Swelling of the legs is really a bad thing. Compression pants and" rel="nofollow - men recovery compression socks can eliminate swelling. Another important advantage of these things is that they can provide support for the legs, which is an essential function for me with leg pain.

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