Cancer good, legs bad: Hello We have... - Advanced Prostate...

Advanced Prostate Cancer

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Cancer good, legs bad

Tfly
Tfly

Hello

We have not posted until now, but have gained immeasurable knowledge from this site.

Eric was diagnosed 12/19/2017 (Merry Christmas). His PSA was over 1800, alkaline phos was really high, mets to bones and lymph nodes. He started chemo (taxotere) a few days later, with Lupron shots monthly. Four rounds of chemo later, he started Zytiga and prednisone.

As he was going through chemo, his legs/feet started swelling and aching. He started to elevate his legs at night, and used compression socks. After chemo ended, he was feeling pretty good, started exercising, and even got out on the gold course.

As his legs continued to bother him, he added Lyrica to the drug regime. He also had some spot radiation on one leg. Neither of these seemed to help.

Ten months into this journey, his cancer numbers are EXCELLENT. PSA and testosterone barely detectable, alka phos within normal range. His most recent MRI showed a decrease in the lymph problems. All good.

However, his legs have gotten so bad that he can barely walk. He's using a cane, and finds it very difficult to set / stand. He's doing aqua therapy 1-2 times a week for the last 2 months so still trying to keep active. We tried going off prednisone and this does not seem to help. Had ultrasound on legs - did not show deep vein thrombosis. Had ultrasould on heart - did not show any problems.

We are running out of options and possible answers.

Has anyone else experienced this? Any remedies?

25 Replies

Prednisone may not be the culprit - it may be a possible solution. Edema is a sign he may not be taking enough prednisone to counter what Zytiga is depleting. When that happens, the pituitary puts out ACTH which paradoxically raises the cortisol level and results in edema, hypertension, and hypokalemia. It's something worth discussing with his oncologist.

Tfly
Tfly in reply to Tall_Allen

Yes, I think we are going back on prednisone - will talk to the onc. Is there a blood test to measure cortisol?

Tall_Allen
Tall_Allen in reply to Tfly

Yes, ACTH, cortisol and serum potassium tests are available.

I've had a simliar problem with my legs and feet both during and after Chemo. I elevate my legs and use sport socks. I'd like to find a better solution but haven't found one yet.

My dad has experienced similar problem with his left leg. He had this problem after chemo and RT. Healing takes time. Lymph drainage helped a lot.

Now he has same problem again after Lu-177 treatment.

had similar problem after chemo in left leg only. this resolved by itself after a year but I now suffer from what my GP calls varicose excema, in both legs. steroid creams and moisturisers seem to have little effect. Still this is small price to pay, for my otherwise good health. PSA 0.1 for last 6 months. Keep on Keeping on.

I'm going through the same and I have found no answers yet. I will check on ultrasound I have not had one on legs.

Larry

I had the same condition in the same sequence of events - swelling feet and ankles post radiation and then post chemotherapy. So bad at times I couldn't sleep (it got worse as the night progressed, from about 9 p.m. onwards, then leveled out and diminished at about 2 a.m.). Lymphatic drainage/ massage including wrapping the legs for a couple of weeks (about 6 physio sessions) really helped relieve the condition and get the swelling down markedly, and it disappeared after about 6-7 weeks. My legs still bother me occasionally but swelling has gone and I try and exercise them as often as I can remember to do so (lying down, legs raised, moving feet in circling and gentle up and down manner). My lymphatic physiotherapist recommend a protein supplement and I've been using whey powder in my morning muesli ever since (started about 3 months ago) and that seems to have helped a lot. May be pure coincidence but the disappearance of the swelling coincided with the protein supplement. Apparently, a very digestible protein does something good to the connective tissue and that helps with the lymphatic fluid circulation. Another recommendation from her was that I drink 2 liters of water every day (other liquids don't count). This is often a challenge but I try to drink as much water as I can every day.

Tfly
Tfly in reply to Ian2017

Were they calling it lymphedema?

Ian2017
Ian2017 in reply to Tfly

No it's not lymphoedema. Thankfully. I had a specific lymphography scan with contrast etc. to check that.

Tfly
Tfly in reply to Ian2017

What exactly were they calling it?

Ian2017
Ian2017 in reply to Tfly

Nothing specific. Just obstructions in the lymphatic system caused by the presence of tumor. I have the impression that not a lot is understood about this problem anyway. Hence the treatment is basic, relatively speaking (massage rather than medication).

I really appreciate all the helpful advice. You guys are the best!

Hi; I am a physical therapist who specializes in treatment swelling problems. I studied in Germany at the Foeldi Klinik with Michael and Ethyl Foeldi and am a certified Lymphedema Specialist.

Lymphedema is an abnormal swelling problem of protein-rich edema that is in the tissue spaces surrounding the vessels and other structures. Lymphedema is often secondary to problems such as radiation or surgical procedures to remove lymph nodes. It is far more likely that the lymphedema develops due to the veins failing which is called chronic venous insufficiency. This is another form of secondary lymphedema.

Lymphedema signs show swelling which typically occurs because of a mechanical failure of the lymphatic vessels to keep up with the fluid load and therefore the protein load in the area. The protein left in the interstitium or tissue spaces causes fibrosis to develop which is basically scar tissue so the tissues become gel-like and congested and eventually gets hard.

The best form of treatment is to perform compression which typically involves use of specialized foam (Komprex II or channel foam) and short-stretch (rosidal or comprilan) bandages. These bandages look like ACE wraps but they are very different. They are rigid and do not allow the fluid to remain in the tissue spaces but they get pushed back inside the lymphatic vessels and veins to be promoted to move back proximally toward the heart. Exercises in the bandages really help move this fluid as the muscles from within push against the rigid bandages.

The other crucial piece to the puzzle is to add Manual Lymphatic Drainage (MLD) a specialized massage technique. This can be done by a Certified Lymphedema Therapist (CLT). Most insurance companies will pay for this therapy if it is done by a Physical Therapist. Medicare pays for this by a physical therapist but not by a massage therapist. I suggest calling your local physical therapy offices to find out if they have a CLT on staff.

Prior to going to Germany, it was taking 3-4 weeks of MLD and bandaging to reduce legs adequately to fit into compression stockings, but with experimentation, I have tripled the amount of compression using 3 layers of short-stretch bandages and have instructed patients in a very simple version of the MLD which I have them do every hour and treatment has reduced from 3-4 weeks to 3-4 days.

The greater the swelling and the harder the tissue the tighter compression socks are necessary. Commonly people cannot get those socks on so I suggest something like a Juzo wrap, Circaid wrap, or Farrow wrap which is a system that uses velcro and makes it easier to get on. Lymphedemaproducts.com is a great website that sells compression socks and these alternative types of treatment.

I know this is a lot of information but I want you to know that there is help available, especially that there are things you can do for yourself. If you want a copy of the handout of the specialized MLD massage technique that I teach patients, or have more questions, please do not hesitate to contact me directly through this site, or at my email: Loraine@drlovejoyevans.com

I hope this helps you and your husband. Best of luck, Dr. Loraine Lovejoy-Evans

ucladany
ucladany in reply to MrsEricE

Thank you for helping. That was very nice of you.

Tfly
Tfly in reply to MrsEricE

Good info!

j-o-h-n
j-o-h-n in reply to MrsEricE

to MrsEricE, Kudos to you, who is filled with Love & Joy.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/24/2018 4:57 PM EDT

Ian2017
Ian2017 in reply to MrsEricE

This was exactly my treatment and my outcome. Thanks for posting. Very helpful.

Is your husband taking blood pressure medication? If so, is the drug a calcium channel blocker, like amlodipine/Norvasc? These drugs have been implicated in leg swelling problems with patients. See your doctor immediately of course so he can prescribe another med. Also, your doctor will want to order a Doppler ultrasound to see if a DVT is contributing to the swelling, or perhaps he has already done that. The ultrasound tech has to be careful about going high on the leg to the pelvic region to rule out a DVT.

CalBear74

Tfly
Tfly in reply to CalBear74

No, not on blood pressure meds.

Had swelling in left ankle before chemo. Got swollen enough during chemo I pointed it out to MO. She commented I know whats causing that and walked away. After chemo she did prescribe prednisone with the Xtandi. The swelling went away. So may very well have been the prednisone - in my case, anyway. Best of luck.

j-o-h-n
j-o-h-n in reply to monte1111

to monte1111,

She walked away? Don't tell me you were showing her your short leg again.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/24/2018 5:01 PM EDT

Yikes

I get slight swelling in legs while on predisolone and have just had 5 chemos with Docetaxel. But yesterday I cycled 60km, about 3 hours and I've been regular cyclist for many years, so it seems to protect me from a lot of things.

But hardly anyone is going to take up cycling, or spend the equivalent 10 hours per week in a gym. I am 71, and apart from Pca, I am fairly healthy, but if I was 85, maybe I'd have many other things to lower QOL.

But I was getting restless legs at night before sleep, and leg cramps, and I started taking magnesium supplement pills and that problem has almosy gone. Lite salt with NaCl + KCl + MgCL might be better than plain salt with NaCl only.

Patrick Turner.

Hi there, I can relate to the leg pain issue as it happened to me and is an ongoing source of concern. Before my APCa diagnosis at age 57, I was pretty fit and active. I could run, walk, cycle, play golf and was a regular at the gym. However following ADT, Chemo and Radio, my muscles became very soft due to the treatments and a lack of meaningful exercise. While I did a bit of walking, that was about it, and leg and pelvic pain set in. Now that I have finished all treatments, I am making an effort to regain my fitness. Its a slow process and I constantly battle fatigue. But my leg pain and other niggling aches are starting to become less of a hindrance however, I still need paracetamol at night to take the edge off the pain. I'm getting back to being active again and I specifically include leg exercises in my gym routine, albiet with less weights than before, but it is helping to rebuild muscle mass and to work and strengthen all the tendons and joints. This is really helping with the leg pain and for standing up when I've been sitting for a while. APCa has really made me an old man but I'm still alive and have a lot of living left to do. So my advice is try and regain some strength through physical exercise and it starts with the mental battle which argues with us to take it easy. All the best, 😎DD.

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