Edema

[davebliz]

I’m 7 years in my PC journey. Got major Edema in legs and up in torso. They have put me on a strict low sodium diet and increased my diaretics to hopefully control and eliminate the Edema. I’m a week into that and have lost 10 pounds so hopefully it’s starting to work. Anyone else have or had Edema. How did it go? Thanks.

[MJCA]

hi know keeping your legs elevated can help. There also compression socks if they get to your feet. Good luck!

[Skoda1 in reply to MJCA]

I had oedema in both legs soon after being diagnosed. It was so bad that I couldn't wear trousers - normally I'm a stick. It slowly went but there is a tendency to come back if my blood/lymph flow is restricted. I found that I can wear ordinary socks if I keep the tops rolled down over the ankle or wear very high loose socks (like football socks). Some people wear ordinary socks but cut the opening. HTH

[MJCA in reply to Skoda1]

Wow. Just take care of yourself.

[Redbonedog in reply to MJCA]

Tubigrips which can be bought in line are also useful for compression

[billd50]

I run a PC support group in Colorado. I haven't seen much edema in the guys who attend, but recently a guy showed up with lymphedema, which supposedly was caused by his radiation treatments. I think that damage to the lymph system whether by PC surgery or radiation can cause this. How were you treated? There is a protocol for treating lumphedema, but apparently there is no cure. The guy in my group is seeing a specialist for lymphedema, and apparently these folks are usually physical therapy specialists. Standard treatment is called "Complete Decongestive Therapy" (CDT) . It includes Compression, Manual lymphatic drainage, exercise, skin care, elevation, diet and even surgery. Seems like your best bet might be to find one of these folks. Good luck. Bill

[swwags in reply to billd50]

I have lymphedema in my left leg mostly below the knee. Mine was caused by the removal of 30 lymph nodes in my abdomen. PT and compression socks help. Staying skinny helps. I walk 5 to 15 miles a week. That helps. Staying off salt helps but there is no cure. It is possible for surgeons to remove nodes from other parts of the body and replace some of them but can’t see myself taking that chance.

[davebliz in reply to billd50]

Thanks.

[billd50]

Follow up to my last reply. I searched Microsoft's AI engine "copilot" for CDT. You need to be careful of AI sources in general, but look at the references they give. Here's what came back:Complete Decongestive Therapy (CDT) is a comprehensive treatment for lymphedema, a condition where excess fluid (lymph) collects in a part of the body, causing swelling. CDT aims to reduce this swelling and improve the patient's quality of life - Physiopedia](physio-pedia.com/Complete_D.... Here are the key components of CDT:

1. **Manual Lymphatic Drainage (MLD)**: A gentle massage technique that helps move trapped fluid so the body can reabsorb it.

2. **Compression**: Using bandages or compression sleeves to apply pressure, which helps move excess fluid and prevent it from returning.

3. **Exercises**: Specific exercises to improve lymph fluid flow and prevent swelling.

4. **Skin Care**: Regular cleaning and moisturizing to prevent infections and skin changes.

CDT typically occurs in two phases:

- **Phase 1 (Intensive Therapy)**: Focuses on reducing swelling and improving skin condition. This phase can last 2-4 weeks and involves wearing compression garments for most of the day.

- **Phase 2 (Maintenance)**: Aims to maintain the reduction in swelling and optimize connective tissue - Physiopedia](physio-pedia.com/Complete_D.... This phase involves ongoing self-care and exercises - Physiopedia](physio-pedia.com/Complete_D....

Would you like more details on any specific part of CDT?

[davebliz in reply to billd50]

Thanks Bill. And yes I would appreciate any details you have on CDT, it’s all new for me.

[billd50 in reply to davebliz]

That question about additional questions came from the AI chat, not me.Sorry. But I did send a note to my contact here, as to how he found the person who was able to help. I'll forward when I hear from him. Bill

[davebliz in reply to billd50]

Thanks

[jfoesq]

Yes- I have had edema- mostly in one lower leg since ADT began more than 12 years ago. More of a nuisance for me than anything else. I wear my socks lower on that leg otherwise it can get a bit painful.

[jfoesq]

O forgot to indicate, that like another responder, O too had numerous lymph nodes removed from my stomach during my prostatectomy, so perhaps that is something that needs to be considered as the cause or contributor to my edema

[davebliz in reply to jfoesq]

Thanks

[InqPers]

Edema is a term for swelling of some type and could like be from several causes. Lymphedema is specific to swelling caused by the flow through the lymph system. In my case, I developed lymphedema in my pelvis and left leg, likely due to pelvic radiation from my PCa treatments, and perhaps from having 3 lymph nodes removed during my RP. Typically it can be reduced at outset by an occupational therapist and then managed (kept from getting worse) by wearing compression garments. A bit of a hassle, but you get used to it. I've found that you need to be consistent (meaning every day!) with the compression garment use to keep it from getting worse. There are some surgical options that can help, but no for sure cure as of yet.

[CRPCMan]

I had it. Ended up being a bad heart valve so check it out with a Cardiologist.