Leg weakness and knee pain

[curro]

Hi all i was wondering if anyone has had same experiences as me with my legs been driving me mad last 4mths with no improvement...I hav had stage 4 metastatic prostate with Gleason score 4+5 past 5 yrs and had every treatment possible to control it ..My PSA went up to 330 5 mths ago and thats really when it all started i thought it mit be spine pressure but scans dont really say that..They feel like i hav run 20 miles and just ache constantly..I hav been on Targin 40.s and lots other pain killers but now i hav had Actuim 225 in South Africa it has stopped the cancer looking like its controled and PSA back to 120 but the legs are still weak and getting worse ...Been on testosterone blockers 5yrs maybe thats the cause muscles wont repair ..dont know ..thanks any suggestions would be greatlly aprecated..cheers Curro 

[Charles (Chuck) Maack]

If you are experiencing any of these symptoms: 

• Swelling.
• Pain.
• Redness.
• Warmth to the touch.
• Worsening leg pain when bending the foot.
• Leg cramps (especially at night and/or in the calf)
• Discoloration of skin.

This then could be a sign of developing Deep Vein Thrombosis/DVT (Blood Clotting)!  This should be determined IMMEDIATELY since if so, those blood clots could begin transiting to the heart or lungs!

[Bruce Kynaston]

Currie,

Your symptoms of leg pain would make me wonder about nerve pressure in your spinal cord or close vicinity, but your scans, you say, have not helped.

In my clinical practice, I would tap gently, with the side of my clenched hand, and if no tenderness, repeat with a little more thump, down the vertebral column.

if a tender focus is found, radiological examination would follow.

one needs to exclude any risk of a metastasis causing your leg discomfort.

(My career was in radiation oncology.)

best wishes,

Bruce.

[alanbarlee]

Hi Curro,

 

Your experience with weakening legs reflects my own.

 

Androgen deprivation over a long period causes sarcopenia - loss of muscle mass. The best option is supervised resistance exercise at a gym. This is a treatment regime that should be prescribed at the beginning of the prostate cancer journey, but sadly, it usually isn't, even though there's excellent research that confirms many benefits.

 

Good luck with this.

 

Alan

[Bruce Kynaston]

Curro,

Myapolopg for not noticing my iPad's  mind of its own as to the spelling of your name.

I have advanced macular degeneration, so missed it.

Best wishes.

Bruce.

[Patrick Turner]

17 hours ago, curro said:

cancer looking like its controled and PSA back to 120 but the legs are still weak and getting worse ..

I am not a medically trained bloke so I don't know the exact cause of your leg weakness and swelling, let alone suggest any cure.

You did  not say your age, which I think affects how any of us cope with the cancer experience.

I am 71, diagnosed late 2009 with Gleason 9+9, inoperable, have had EBRT and salvation IMRT to PG plus ADT since 2010, with cosadex and abiraterone giving 14 extra months of Pca suppression, but this year and after 4 x PsMa Ga68 scans since may 2016, I am riddled with many bone mets but organs seem to be free.

I had 5 shots of Docetaxel over 15 weeks before I quit last October because Psa went from 12 to 45.

I have had a No1 LU177 infusion, which has had far less side effects than chemo and I hope brings my Psa lower because the Pca is KILLED, which is very different to hormonal manipulation with ADT which is a means of sweeping the Pca under the carpet, aka kicking the can down the road.

I've had a very good life up to beginning of chemo, but all through my treatments and including a double TKR while Psa was < 1 in Feb 2017, I have averaged 1.5 hours a day of exercise mainly by means of cycling an average of 220km a week since 2006, and only briefly pausing during acute effects of medical interventions.

Chemo was the worst, but I cycled at least 20km a day for all of the 15 weeks, with short rides in 7 days after chemo and 60km on 15 days up to and including the following chemo session.

But since Lu177 14 days ago, I had 4 days in the first 10 where legs puffed up with fluid and weight increased 2Kg. I began wearing tight long stockings which seemed to help and I kept cycling. Legs were still aching badly because chemo side effects had not faded away quite as fast as I would prefer, but now legs are a lot better and getting better, and no need for any pain killers or any Predisolone pills, which the LU177 doc said I might have to take if bone mets got sore, but they have not, although I know where they are, and there is sometimes a slight temporary discomfort, but that's been going on since last Xmas. So there's a combo of Pca plus arthritis due to age at work here.

2.5 weeks after quitting chemo, and ahead of getting Lu177 No1, Psa dropped from 40 to 26, and nobody knows why, and so what if anyone did, because I still have a KILLER disease which I reckon will kill me unless proved otherwise. Doc said I was not coming to Lu177 too early; the trend in Germany where Lu177 began has been to trust it and go early, because the other junk don't work much good.

Your Actinium225 nucliede may be giving side effects and my doc said Lu177 gave a lot fewer, and was a more gentle nucliede, although taking longer to work against bone mets. I have ZERO idea yet if Lu177 is working or not and I can't really know until more scans are done. 

But IMHO, I think you have a long way to go before you might say your Pca is controlled. I have read so many stories in groups now and unless your Psa is far lower, it is not controlled, and I'd say there is more to be done to get your Pca low, and maybe you get some QOL back, but many men just get a longer life with much reduced QOL. I have already seen a good amount of my decline, but for me, life is still good, and I have little to complain about. Just think of the teeming billions of ppl for whom there are no modern medical treatments and most die before 55.

I am doing life day by day, and most side effects of most medical things have all faded down and I guess I am just lucky its like that, because many others have far worse luck. But I sure don't ever regret living like an athlete, frugally, and keeping fit by cycling. My will has been strong to keep weight down.

Docs like to see me turn up to talk to them in lycra gear; I was told I was the healthiest stage 4 cancer patient they had ever seen. But they were more shocked than I was when dozens of bone mets turned up after ADT began to fail. Cancer spreads. Its what it does, I expected it, and ADT just kept the met size low until they got big enough to see, so always I assumed I had a lot of mets from well before diagnosis. 

I found I could function real good while I had to live with cancer. I'm tryna continew, but dunno how long before I can't.

Patrick Turner.