Legs going AWOL?

[Trickysite]

I am like the Duracell bunny in reverse. 4b OC high grade serous, newly diagnosed, on first dose of taxol and carboplatin, I am finding I have heavy legs which I don’t seem to have automatic control over but have to “work” consciously, especially on carpet, and try and take large strides to speed up as I tend to shuffle. No numbness or peripheral neuropathy or pain or muscle tightness. Balance not so good and have to take an arm when I am walking out . I try and walk slowly for about 45 mins each day. Not dizzy. Legs seem to get increasingly tired as I use them during the day. Have told CNS who will tell oncologist. Any thoughts, wonderful ladies?

[NotThatGirl]

Hi Trickysite,

Heavy sensations in arms and legs may actually be a sign of neuropathy. It’s great you’ve already mentioned it to your team—they may need to lower your chemo dosage.

Good luck with the rest of your chemo! (I just had my last cycle yesterday. 😊)

[Trickysite in reply to NotThatGirl]

Thanks. I have some neuropathy in the tips of my fingers which my CNS knows about and says is ok so you may well be right and it is just affecting my legs in a different way. CNS indicated it was all a matter of the degree of neuropathy so I will keep the CNS informed. Congrats on last chemo. Good times beckon!

[Jenjill47]

Just one thing comes to mind - have you had your haemoglobin levels checked recently? I had similar symptoms and mine were very low. A blood transfusion made a huge difference! Good luck!

[Trickysite in reply to Jenjill47]

Hi Jenjill, very helpful! I will ask my oncologist. Keep safe.

[Jenjill47 in reply to Trickysite]

Good luck and let us know how you are doing!

[Mumsie13]

I had similar problems with my legs during treatment for first recurrence; far worse than during first line treatment. I already have neuropathy in hands and feet (thanks paclitaxol) but it did not seem to be getting worse. I was short of breath and my legs were all over the place. At times I could barely lift them and climbing stairs was a nightmare - two flights and I had to stop half way. When I got to the top I had to sit down before I fell down and I had to be very careful coming down stairs too. I mentioned several times to CNS and registrar that I was worried about this but they didn't seem at all concerned. I phoned chemo rapid response in the end and they discovered I had extremely low magnesium for which I am still having treatment . I also had a pulmonary embolism which I didn't know at the time. Fortunately that has also been treated and gone. I am not saying there is anything drastic going on but just emphasising that it pays to pay attention to these things. You don't know what you are storing up for yourself further down the line. Make sure your team are monitoring it. In my case I felt I wasn't being taken seriously and phoned the chemo rapid response in sheer desperation although I wasn't sure I was supposed to. However, they said I did the right thing because I was obviously feeling unwell and that's what they are there for. Sorry this is a bit rambling but I hope you get the jist. Please be assured it's not all doom and gloom, despite everything I am feeling quite well at the moment. 🤗 Jackie.

[Trickysite]

Thank you, mumsie13. Very interested to hear your story and will make a note of magnesium. Glad you are much better. X

[delia2]

I agree with Jackie. I felt like that too during frontline. My legs felt like they were made out of wood. I had anemia and low magnesium too. I got frustrated because the nurse would say call if you have any problems but when I would call she’d always say that’s just a chemo side effect. Finally I got my daughter’s attention (a doctor) and she actually intervened and I got a transfusion and magnesium infusions. So be a squeaky wheel! Xx

[Trickysite in reply to delia2]

Hi Delia, I think I am normally a bit anaemic and who knows on the magnesium front! I will ask for both of these to be tested and whatever else they can think of. Thanks to you and all advisers! ,

[Mumsie13 in reply to delia2]

Quite. It's our journey, our experience. Our concerns are valid but sometimes we just have to fight hard and be our own advocates