Severe Swelling in Left Lower Leg?

Hi gals - i hope this finds you all enjoying some of the holiday season already!
i just finished my last chemo #6 on Nov 11th. I think my fam and friends expect me to be back to or at least on the road to normal by now; perhaps i do too;
Unfortunately - not so.
All thru chemo, i have had problems with my left leg, and foot, from the ankle to about 6 inches up the calf, severe fluid retention and a shiny red extremity about 6 inches up - it is also warmer than the rest of my leg.

My gyn/onc after chemo #4 sent me for a venous doppler to make sure there was no dvt (blood clot) - it was of course negative.

Also - the neuropathy has gotten worse again; tingling in all extremities and of course the attacks of muscle pain feeling like they have been put thru a meat grinder... ugh -

Basically, i was wondering if anyone else had such symptoms in their extremities?

it it very tight and quite painful and difficult to walk on; and with the neuropathy and drawing up of the muscles - geez this is no fun.

Thoughts? Suggestions? Feel free to offer any feedback. you guys are the best. luv ya, kimmer

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Oh forgot to add - it is only the LEFT lower extremity - not the right one - i have tried elevating it most of the day, exercise/light walking, cutting back on salt; the pitting edema is pretty pronounced. wonder if this will ever go away? i even wondered about lymphedema, since of course we had a lot of our lymph nodes removed.... makes ya wonder.....?

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It sounds like it could be lymphedema or celulitis. You need to get it evaluated. I'm not sure who you oncologist would refer you to.

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Did you see srwruns post about her lymphocele? Maybe that's your problem.

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Hi Rozetta, thank you for that advice! I need to read up on it; and i saw her post but did not read it. i will go ahead and do so...
yes i do need to keep it elevated. I spend so much time sleeping in my rocking recliner just because it is so much more comfortable than laying flat in bed.
and that may be one reason why the left leg swells - it dangles more than the right one.
but the strange redness and heat is worrisome.
I do not have diabetes, but i do have high blood pressure.
Thanks girlie for the advice. I know there are physical therapists who are certified lymphedema specialists; just not sure if i can afford a bunch of PT right now; in fact, if it isnt paid at 100% - i cant!
So i will see what my gyn/onc suggests. thanks so much!

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saw your post on my question about lymphocele. I clearly have a lymphocele determined from both a CT scan at the ER 10 days after surgery and confimed again today by US. It appears to be putting pressure on my iliac vein causing the symptoms. I had ultra sound in the ER at that time and they couldn't find a DVT in my leg but treated me conservatively because of blood flow restriction due to the lymphocele. It's not exactly clear to me that lympherderma is always caused by a lymphocele. It's clear a lymphocele is a fluid fill sac; whereas I believe lymphaderma is also caused by the damage to the lymph node system when taken during surgery . It's all so confusing...I am hoping that some sort of draining of my lymphocele will take care of the problem. But I read they often come back. ARRGGHHH

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oh girl i totally agree - it IS so confusing!!! and trying to make sense of what is going on inside your body to make it react a certain way can make u crazy. or at least make u feel like u are going crazy.

i was up most of the night with this aggravating neuropathy and swollen leg....

but this is something i guess i will either have to learn to deal with or hope in time it goes away....

good luck with your situation too! :)

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I don't know whether my experience would be relevant to you or not. After surgery my left leg ballooned and the surgeon didn't know why. I had gained 30 pounds after the surgery, mostly fluid in the left leg. It was huge.

He told me to try keeping it elevated as much as possible (with the foot higher than my heart) and to eat a very high protein diet. He said to eat like a body builder trying to gain muscle. That puts more protein in your blood vessels to draw water out of the tissue. I did that, and over a period of a week or two the swelling subsided. It has not returned. I realized I have always had a rather low protein diet. Not much meat, but a lot of fruits and veggies. It was a big switch to mostly meat and eggs and cheese and fish.

As I said I don't know whether this is relevant to your situation, and I wouldn't try the high protein diet without first running it by your doctor.

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Hi Kimmer,

Having almost the same problem as you. About a week ago my right leg and ankle started swelling like a balloon. At first I ignored it and elevated it when I got home, the swelling would subside but the next day as soon I got dressed with shoes and socks it would immediately begin swelling. Called my gyn/onc and they said to come over right away and they would do a doppler. Of course no blood clot for me either. My doc sent me to a vascular surgeon yesterday and he said it was definately lymphodema and it was going to be chronic. Yeah!!!! Just like the cancer!!!! He recommended that I wear a support sock, you can get them at any pharmacy and he sells them as well. When I put this on the swelling does go down. He also recommended excercise of any kind. Said the movement in my leg and muscles would make the fluid travel back up the leg. Lymphodema is caused by not having enough lymph nodes in the belly. I had 18 taken out when I had my hysterectomy. I hope this helps, it may be what you have or something else but it sounds like what I am going through. Let me know if you have any questionsn.
Kathy

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dear kimmer....

my entire leg swelled after chemo was finished because of lymph node taken during surgery...it did not happen right away but later.
my doc wrote me a script for lymphatic drainage massage which i did but i also did this "bellows breathing" because i am a yoga teacher which the therapist said he had learned in germany and was surprised how much it took the leg down...it is called khabbala bhati breath and can find online...
also he had me wrap my leg every day and wear elastic stockings (all covered if a doctor writes a perscription) to keep the fluid going toward my heart not downward...after a year it was gone and still is 8 years later...i so get it about the money and the time thing
and this could not be your problem at all...

good luck

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Hi,

I agree it sounds to me like you have lyphodema. I have it in both legs and wear the compressoin stockings which really help. My PT also suggested that I buy a small trampoline with handles because research has shown it helps with the circulation. That is something that I have not yet done.
If it is covered under your health plan, I suggest that you go to a PT who specializes in this treatment to get in under control.

Good luck,
Katie

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Kimmer,
If your insurance does not cover the support hose you can buy it much cheaper than at a pharmacy from ameswalker.com on the internet. I purchased a pair of thigh lenth hose for $29 for which the pharmacy wanted $89. It really helped me.

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Kimmer
I went for PT with Acupunture for neuropathy I did not have any swelling. The PT included a lot of stretching
for the hands one arm straight out in front palms pointing away fingers pointing up with other hand pull back on fingers. To help with balance and strength try standing on one foot.

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Kim, Sorry to hear about the swelling in your leg. It does sound like lymphedema to me, and the sooner you treat it, the better off you'll be. Go to Dr. Numnum as soon as you can get in and have him check it out. When my phlebitis got infected on my left arm, it swelled, turned red and shiny and was hot. I was convinced (thanks to the all-knowing internet) that I had lymphedema so I did a lot of research on it. Turns out, if I was going to have lymphedema post BSO/debulking surgery, it would be in my legs not my arm since my lymph nodes were taken from my pelvic area. But one thing I found out was that lymphedema has stages or degrees of severity and the longer it progresses, the harder it is to treat. I'm praying you can get affordable or free treatment and your aches and pains resolve quickly. I still have muscle and joint aches and pain 4-1/2 months out from treatment. It seemed like it was getting better, until the cold weather showed up that is. Who's complaining though--I'm NED and have a new lease on life. Good luck, kiddo.

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Kimmer,

Hello sweetie! I haven't been on lately but something made me come to the computer right this minute and as I was going down the discussions here was the reason!

I really don't know what I would do without this site!!! Honestly, all of your are a Gods send and when I don't seem to have a clue or an answer, just like you, all you have to do is post and wa la...here come some really good advice or clues.

I really wish I could simply just get to a point but here goes. So, you are right in the midst of chemo, still getting your regular doses of chemo and I am now almost 10 months out....

On Saturday night getting off the plane, short trip of 1 1/2 hours, I couldn't walk. The pain was terrible in my feet and my balance was terrible. My mouth was so dry that I could hardly make my lips move over my teeth. We got home from the airport and I felt freezing cold. I was getting undressed and I couldn't believe my feet, ankles and lower legs. They were so swollen, red and tight. I took a pain med and a Xanax and went to bed. Next morning the swelling was worse, no ankles at all and the skin was red, shiny and itchy. Today the swelling is somewhat better but still there but with a spotted rash from toes up both legs.

I had severe feet and leg swelling post surgery that went up to the groin area and also went in for a doppler and there was NO clot in the legs but a major water weight gain of 15 pounds almost overnight....put on lasix, water pill for four days and it resolved after a week and a half.

So, okay, what the heck is going on with all of us and the leg swelling??? Your just finishing chemo and I'm way out in terms of months. Is it because our lymphatic system is messed up because of the removal of so many lymph nodes?

This is pretty strange. I hear you Kimmer, it is always disturbing and I also hear you about everyone in the fam wanting and believing that we should be getting back to normal...NEW NORMAL.

You really need to give yourself some time to heal emotionally, physically and it's hard to do when something new continues to pop up! You'd had some pretty bad reactions to drugs and maybe this is another one. ???

I haven't checked old posts as suggested but will do this right now. I just want you to know that I hear you but have no answers either.

Hang in there. If somehow I get some brilliant answers tomorrow from the doctor I'll send you a message.

Big hugs,
Bobbie

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Kimmer-- and Bobbie--

I have nothing to offer but healing wishes! Hope you all are better soon.

Linda

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Bobbie, I discovered that secondary lymphedema can affect people months and even years after surgery, and flying on an airplane is one of the things that can exacerbate the problem. Read this excerpt on lymphedema from the Mayo Clinic web site:

"Surgery can cause lymphedema to develop if your lymph nodes and lymph vessels are removed or cut. For instance, surgery for breast cancer may include the removal of one or more lymph nodes in your armpit to look for evidence that cancer has spread. If your remaining lymph nodes and lymph vessels can't compensate for those that have been removed, lymphedema may result in your arm.

Radiation treatment for cancer can cause scarring and inflammation of your lymph nodes or lymph vessels, restricting flow of lymph fluid.

Cancer cells can cause lymphedema if they block lymphatic vessels. For instance, a tumor growing near a lymph node or lymph vessel could become large enough to obstruct the flow of the lymph fluid."

Until you see your doctor, you should elevate your affected limb as much as possible, keep the skin protected from injury, moisturize the skin daily, and do not use heat on the affected area.

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Jen,

Thank you so much for the information! I had no idea and like most, I get weary of the ER reading my name as someone in the waiting room! I know it's not very smart thinking but I won't miss my appointment with the dr. in the morning.

Thanks again :)

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wow ladies - well it is good to know that i was on the right track. i know very precious little about lymphedema but i am getting a crash course now it appears.

my onc nurse today was concerned about cellulitis in addition to the lymphedema; and i suppose i better get on top of this because i do not plan on letting this condition get worse.

i will take every bit of advice and apply it to my situation.

it is so amazing, like bobbie said; that all we have to do is send out a cry for help and wow - we have so much support and advice - you guys are amazing....

what would i do without you? with love, kimmer

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