Leg weakness

Hi and welcome Mackthespoon (not theknife), I don't think we've chatted before! If you are on treatment of any kind, I just read your profile, I would report this leg weakness to your GP or oncology team. There are quite a few drugs that can cause this. However spinal problems cause this too, so it's worth finding out what is causing it. I hope you get this sorted out quickly! 

I’ve spoken with my GP. He has reduced my steroids by half and I’m feeling a lot better now. It’s amazing what effect drugs can have on you.  

My mood swings have improved too!  

My GP is going to look at my care on Wednesday as I feel I have been left with no one to help support me. My family are wonderful but not medical. 

Although I won’t be given any more treatment it’s quite difficult to not know how long I’ve got but I suppose I should take one day at a time. 

Does anyone else feel like this?

Hi Mackthespoon

Two things firstly regarding weakness in your legs. I had an adverse reaction to my immunotherapy which caused hepatitis and put me in hospital where I received large doses of steroids. These made me feel very down and I found myself getting upset very easily. When I was discharged I went on a family break with my wife three sons and their partners and six grandchildren. I was devastated to find I could only walk short distances and felt generally lousy. When I returned I found my liver function was poor and had to have more steroids although significantly smaller doses. I have subsequently regained my strength to some extent and am now back to the gym two or three times a week. 

Secondly I like you have a supportive family but find it hard sometimes to put on a front and appear positive.  I am in a betterment position than you as I still have some treatment options but still know my life is time limited. I now make a concerted effort to look for the positive things around me and find sometimes it really does help to count my blessings. I appreciate this is often easier said than done. Try an remain hopeful and use this forum to talk to others experiencing similar feelings. Good luck. 

Hello Mackthespoon,

I've just logged into here with a similar issue to report. A few days ago it was like my bottom half just stopped working! I guess I had been a little less mobile as in a lot of pain (having to increase my daily Oxycodone dose) but I had no idea i'd stopped doing enough to keep my muscles ticking over. I was shocked to go to the loo and discover I couldn't get up from the seat - I had to shout for my husband to come and lift me. I'm on so many medications now - steroids, phosphorus tablets, anti sickness, oxycodone for pain, and my actual treatment (cancer blocker pills on a trial basis). We've attached a higher toilet seat to the loo for now but I refuse to believe this is my mobility from now on. I've got a physio coming on Monday so will just have to hold tight and try and be as active as possible until they come - I need my mobility back! Are you on any specific meds that could be affecting your lower limbs? Are steroids a known cause? I hope you get your mobility back soon too, it's really quite scary losing it all of a sudden!

Rebecca x

Hi Mackthespoon, Rayboy, Rebecca and others, I'm so pleased Mac that your GP is going to take a look on Wednesday to try to find out what's going on with you. I was wondering have you had any scans recently?  Rebecca, if you have increased the Oxycondone, watch out as I found after being on that for about four weeks, all sorts of strange things happened to me and when I stopped it, they disappeared practically overnight! Rayboy, I know only too well what you mean, as I'm sure lots here do, when you say you find it hard to put a brave face on! We all do it as we don't want to worry our families any more than we have to but the fatigue and mood swings are sometimes very hard to control and then we get these strange side effects on top of that! This is where to come and let us know how you "really" feel! 

Also one of you mentioned not having support! There is support out there but you need to ask for it. Do you have a specialist nurse you can talk to? Everyone should have one I believe. Or phone the helpline here, they have an abundance of knowledge and could point you in the right direction!

This group is so important because we know how others feel because we've either been through it or are going through it!

Have a lovely weekend.

Hi Annette,

Thanks for replying so quickly. I’ve been oxycodone (prolonged release and then oxynorm “boosters” for breakthrough pain) for a while but recently had to increase my dose to 80mg twice a day and 25g boosters where needed. Let’s see what the physio says on Monday. Today I’ve been in awful pain so have had plenty of boosters and generally quite out of it, hate days like this. I have a specialist nurse but she seems most concerned with my treatment and blood tests, and then I have a palliative care nurse through my nearest hospital who focuses on pain management. She’s lovely but it doesn’t feel very joined up at the moment and I just feel like I’m on this long long list of medications and god knows what’s affecting what and for how long! I’ll just see how it goes day by day I suppose. I just really want to go back to being free enough to go to the pub for a pint or make some plans rather than just feeling totally sofa-bound.

sending lots of strength and positivity to everyone this weekend. Rebecca xx

Hi Rebecca (Londonlondon),  I have been wondering how you are doing and how you got on with your physio last Monday? I do hope you are managing to control the pain with your slight increase in Oxycodone plus quick release boosters! I go to my surgery on Monday to get my bloods done before my visit to see my oncologist on Thursday! It is good I can do that because otherwise I would spend a long time in the queue to get blood taken and then another hour to hour and a half waiting on the results before seeing her! This way, she already has the results, so it makes the whole process quicker!

MAckthespoon, how are you doing? Have they found out why you are having weakness in your legs and if so, I hope it is being treated successfully!

Take Care ALL, Have a great weekend!

Hello! Oh it’s been such a whirl wind. I was admitted into hospital last week and after some scans i had fluid drained from my heart as the cancer appears to have spread to the heart. I’ve been allowed home but I’m just with all of this  to best honest. My mobility is so bad that everything is so difficult (will I fall? How will I get off the floor?). I’m reliant on my husband to lift me into upright position. I wish assisted dyeing was a thing! Or that someone would tell me me I improved. 

Hello Rachel,

I read through this thread and got to the end and wondered how you were?  How frightening it must be to have your mobility suddenly go from you on top of everything else.  And now movement to your heart.   I hear the fear of things suddenly happening out of left field.  I've been sent into a panic for less than what you're facing now; the unknown of what is happening.  I am hoping for you that the change is because of your medication or something that can be repealed to give you back the quality of life you've had.  Sometimes I want to shout too "enough"!  I hope you have good support.   

Much love

Robyn