Popeye Posted October 23, 2012 Share Posted October 23, 2012 I have just updated "My story" with relevant treatmet updates on what is happening at the moment. One of the symptoms I have experienced over the past six weeks has been the weakening of my legs and the appearance of what I call wonky legs. I had a laminectomy (back operation) in 1992 and the symptoms are like what I put up with when I was getting over the operation. However this time around they appeared 6 weeks ago and have steadily got worse. I have little strenght and my legs give way as I walk. I have not fallen yet but it is a worry. I had scans done and an MRI to exclude any metastases with the cancer and the scans came back showing just arthritis. My new doctor here in Nambour tells me it is a known side affect of ADT that the main muscles in the thigh of the legs can be affected by ADT causing weakness and also wasting. In all my reseach on the web I have not seen this side effect to the same degree as what this doctor has explained to me in detail. My question then is as follows: Has anyone here heard of this being a major side effect of ADT???? Link to comment Share on other sites More sharing options...
Guest tonybrown Posted October 23, 2012 Share Posted October 23, 2012 Hi Popeye, I was a Gleeson 9 cancer sufferer discovered in 2009. I had Bracy & HDBR followerd by 2 years ADT ( Zoladex only). I am 67 now. I got off ADT 18 months ago. So far so good - my psa remains 0.02. I have always been physically active & have pumped iron for 10 years after giving up squash ( 20 years of competition) when my knees went. I found when on ADT my general strength went down maybe 20% - quite marked. My troublesome knees became weakened even though I persisted with running in water & weigh exercises. I got to the stage that a gentle stroll down the beach for 1 km would give me sore knees. I had arthritus in my hands & had to completely stop exercise where I needed to grip weights. At times I had to return to small doses of prednisone to reduce inflamation. That worked. I thought most of it was due to aging so it was pretty depressing but I just kept slugging away at the exercise. My urologist did admit the main muscles in your legs could be weakened but did not think any other muscles would be effected. Since being off ADT I was fortunate that testosterone came fully back within 9 months & the effect was spectacular. Return to normal sexual function, dissappearance of arthritus in the hands, return of strength - i am lifting as much as i did 6 years ago. Knees still sore but strength much better & I just completed a 12 km climb of Mt Augustus ( the big brother of Eyres rock) in WA. I was sore after but no lasting knee effects. So lack of testosterone in my case has a dramatic effect on my body. All I can suggest is to do what I did - zero load exercise running in water ( it is like dog paddling) There are classes you can join. Just maintain as best you can the muscle tone you have while on ADT. The running in water is the best exercise I have found to maintain muscles & fitness without overloading your body. Link to comment Share on other sites More sharing options...
Bruce Kynaston Posted October 23, 2012 Share Posted October 23, 2012 There has been research at Queensland University and one in Perth to show that exercise os necessary, especially to counter the effects pf ADT. It has to be weight bearing, not water supported as in swimming. Perhaps ask your GP for a long consultation for a review as to your having a course with an exercise physiologist or physiotherapist. Link to comment Share on other sites More sharing options...
tonymax Posted October 24, 2012 Share Posted October 24, 2012 I have been on continuous hormone treatment for over 9 years now. I have indulged in no special exercises during this period although I probably should have. I have noticed a steady deterioration in my leg stability over this time. This is most noticeable when walking across uneven rocky surfaces for instance. However I am generally still OK and not in danger of falling over. To what extent this is driven by increasing age (now 66), various bits of arthritis or the effects of ADT I have no idea. Suspect they all contribute. Link to comment Share on other sites More sharing options...
JimJimJimJim Posted October 24, 2012 Share Posted October 24, 2012 Popeye I launched your question to the internet-sphere, and Keith Cass, who runs the Red Sock Campaign in Cardiff, Wales is putting the question to his support group members, and will let us know what he finds out. Keith has helped us out before, most recently on our submissions to put Zytiga (abiraterone) on the PBS. Click on this sentence to see Red Sock Campaign's twitter feed. Click on this sentence to see Red Sock Campaign's website. Link to comment Share on other sites More sharing options...
Popeye Posted October 25, 2012 Author Share Posted October 25, 2012 Just thought I would thank all of you for your comments. It is nice to be able to pose a personal question on a site such as this and actually have people reply and input such great information. I have been on the exercise round-a-bout walking approx 6 km a day since I have been down at the Sunshine Coast for treatment with IMRT. I will keep you posted on any favourable or otherwise outcomes with my leg issue. I will update my treatment status on "My Story" as things progress. No serious side effects from the treatment so far (only 1 week down, 7 to go) For anyone who hasnt gone through radiation treatment I can offer the following description. It is a bit like being captured by aliens, lying on a flat table with your dacks down while laser lights play across your torso, background music playing softly while an alien like machine describes circles around you stoping and making humming noises every so often. Cheers Lee aka Popeye Link to comment Share on other sites More sharing options...
DavidAbrahams Posted October 27, 2012 Share Posted October 27, 2012 I was diagnosed in July 08 when living on the big Island to the South of Australia, with Metastatic PCa and have been on "intermittent" ADT since then, although 2 months ago the Medical Oncologist advised that I would have to stay on it now for good. (watch this space). (Zoladex and Cosudex) At diagnosis my PSA was 126 5 days later 138. Advised by Urologist that I could suffer from muscle degradation and later when I returned to QLd a Urologist in Brisbane added Osteoarthritis, Osteoporosis and my GP added Psoriatic Arthritis. (Have all 4 side effects). To minimise the impact I walk every day 40 -60 minutes, 2 x 1hr sessions of Hydro therapy, plus resistance training twice a week for about a half hour. Without doubt this exercise regime definitely helps to keep me mobile and with what you describe as wobbly knees. Fortunately I only experience that some times when I've been sitting for a while, however if I know if I'm going to be out and about for a while I carry a collapsible walking stick. Additionally after standing for a 20 - 30' lower backache commences and does not stop till I can sit down for a while. Prevention take Osteo Panadol or Oxynash before the event. Goodluck Link to comment Share on other sites More sharing options...
Popeye Posted October 28, 2012 Author Share Posted October 28, 2012 David; Thanks for your comments. It appears that I am not alone experiencing the massive weakness and wobbly legs in the thigh muscles. It also appears that exercise is the way to go to keep on top of it. I am amazed at the effect of low testosterone has on the strength of a male and how much I previously took it for granted prior to ADT. I can agree with you when you say the wobbly legs bit occurred for you when you had been sitting for quite a while and after standing for 20-30 minutes lower back pain occurrs. It is the same for me particularly if I have been on a long drive. So for me I will continue with my daily walks of 6km or more and ponder further exercise training for my legs as needed. I will keep my story updated as to any changes that may happen. Cheers Guys Lee aka Popeye Link to comment Share on other sites More sharing options...
JimJimJimJim Posted October 29, 2012 Share Posted October 29, 2012 Lee Keith Cass, who runs the Red Sock Campaign in Cardiff, Wales did put your question to his support group members. Here is his reply: Hi Jim, popeye has opened sumthn interesting. I 2 experience loss of balance an now several others r saying the similar. Was told not HT!! Translating from this 140 character Twitter message: Keith also gets loss of balance, and several of his members in Wales are also reporting a similar problem. He was told it was not his hormone therapy. So, it could possibly be a rare complication of hormone therapy. It would not be a common side effect. Hormone therapy has been with us for decades and your doctor would know if it was. Some of these men may be in a similar position to me - I have a different medical condition giving me weakness and loss of balance that is not helped by the hormone therapy. It is easy to imagine some of these men having symptoms of some other medical condition which, by itself, is not a problem, but combined with hormone therapy causes a problem. So, keeping your GP updated with the problem may, for some men, lead to identifying some other cause. Jim Link to comment Share on other sites More sharing options...
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