Just wondering if there is anyone else out there with meningeal met/s. I was diagnosed with quite a sizeable one in May and have just had five weeks of radiotherapy for it. I’m now really struggling with fatigue, breathlessness and weak legs. I’ve just had a phonecall from my consultant to sort out my Phenytoin dosage (I had a seizure before I was diagnosed with the met) and he can’t find any explanation for the breathlessness or weak legs. They’ve run all sorts of tests including a lung ct/ecg etc and I don’t have any mets in the lungs - I do have liver mets but he wants me on chemo for those in a few weeks. The CT showed some increased nodes since June.
I’m getting really fed up and I’m feeling really emotional. I could do with hearing from someone with meningeal mets who has a good quality of life…
Hi Tina67
I’m sorry to read that you are having a such a tough time at the moment. I’m sure the users of this site will be along to support you soon.
In the meantime maybe you would like to talk to a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
Best wishes
Sam, BCC Facilitator
Tina
I have sent you a PM!
Take care and I hope that you get the support that you need soon x
I had a seizure in March of this year and CT & MRI Scans showed mets. in the dural meninges, plus various suspect areas in the brain. Initially, I was put on steroids - Dexamethasone - to reduce swelling. Are you on steroids? Although they can be very effective in helping with various problems, they can also cause muscle weakness and increased fatigue. Just as I was recovering from the radiotherapy, I went downhill again and it was found that the Tamoxifen I’d been on for only a few months, had stopped controlling the cancer. Again, I was put on Dex. to give me a boost and help with appetite, but I am now trying to come off them gradually, as they are leaving me very weak. My Palliative Care Doctor has advised my to build up my muscles by gentle walking, gradually building up time & distance. Exercise is actually supposed to help with fatigue, which isn’t much help if you can barely lift your head off your pillow, of course!
I only had 5 radiotherapy treatments, so maybe that is why I didn’t suffer as badly as you are. I hope you manage to get some sort of resolution, as it is a battle to try to maintain a reasonable quality of life.
My hair became very thin after the radiotherapy and I gather there is every chance it won’t grow back. As a result, I am amusing myself collecting a wide selection of hats (charity shops are a good, inexpensive source) with the help of family & friends!