Lymphedema's

Hi there Fancysmancy,

Although I’ve not suffered lymphoedema personally I realised your post hasn’t attracted a response from anyone so I thought I’d reply even if only to boost your post. 

I’m really sorry you’re having to deal with this issue at the moment after going through the treatment. Fatigue was a major side effect for me during & immediately following my treatment & it took quite a while to build my stamina back up, I still tire easier than before even 4 years on but I do wonder if that’s just an age thing too! I have 2 friends that have suffered lymphoedema following cancer surgeries/treatments & both unfortunately have been told it’s something they have to live with, both to my knowledge wore support stockings on the affected leg. Are you finding it’s the lymphoedema that’s causing the issues with walking? Both of these ladies continued being active & although like with everything I should imagine there’s good & not so good days on the whole they do normal day to day activities & one especially walks for miles. It’s still very early days for you yet & although I know we’re all pretty eager to get back to full fitness this will take time so in the meantime listen to your body, rest when you need to & hopefully you’ll soon start seeing some improvements.

Sorry I couldn’t be of more help.

Nicola 

Thank you for the response, Nikki!

I'm really not sure why I'm so weak. My legs are very heavy and large so I assume that's not helping. This happened rather suddenly and I was weak before I noticed the swelling. I was dx with the Lymphedema at ER after CT, Ultra Sound, EKG and other test to rule other things out. The Dr. said it is a "common side effect" of pelvic radiation so I though maybe others might have some insight.

I am feeling frustrated. Just as I think I'm making improvements I seem to fall backwards. In the beginning the side effects from this treatment terrified me, but I held my breath and jumped in with both feet and hoped for the best. Some times that fear can still take hold when you realize these things may not go away.

Thanks again, Nikki. It was sweet of you to acknowledge my post. It's encouraging to hear from someone who is a four year survivor.

Hey Fancysmancy, I'm just at the end of my treatment, so I can't speak to the long term effects, but I suffered from odema before treatment. It defintely gets worse for me in warm weather, when it's hot my feet swell like bricks and I find it hard to walk much. But sitting also makes it bad, so it's a bit of a buggar.  I've found wearing the medical socks or stockings help a lot, but they're not great in hotter weather, especially if you want to get out and about. Elevate your legs as much as you can if you're sitting or lying down - I prop my feet up on pillows when I sleep which helps.

Mine comes and goes, I know when the weather gets warm I'm going to be less mobile than I'd like and I have a couple of pairs of comfy open flip flops that i wear when my feet swell badly. I believe there is massaging you can do by going to a proper therapist, might be worth asking your care team if it's something they can offer or recommend somewhere. I also can't say if radiotherapy induced lymphodema is much different (mine is known as primary odema) but hopefully those tips help. The lymph system pumps itself by using muscle contractions, so exercise is important, but I know it's super hard when you're in the midst of a few bad days with it.

I hope yours settles soon, I know how sucky it is to suddenly have huge, heavy legs/ankles/feet.

Hello WhalerGirl,

Thank you for all the suggestions! It's nice to hear from someone who has experienced lymphedema, but I'm sorry you have had to deal with it. Im working on getting an appointment with my GP. She was out of the office this week. I did read there is something called Acute Lymphedema caused by radiation treatment. It seems to come on fast and soon after treatment. It is typically a temporary side effect. I am keeping my fingers crossed that this is the case. I hope that your recovery is quick and with few side effects. xoxo

Take care,

Fancysmancy

I have finished my radiation chemo treatment and my feet and legs are swollen I think it's the heat have tried compression stockings. I would agree keeping feet elevated and some leg stretching 

Yeah, that's the weird thing, I have been keeping my feet up. I am swollen from my waist down now. The weekend is over so I hope to see the Dr. soon. Thank you, for the reply and I hope you're hanging in there. xoxo