[leanne88Participant]

Hello all,

I’m writing on behalf of my mum who was diagnosed this time last year with MM and breast cancer in near enough the same week. Over the past year she has suffered through a mastectomy, heart attack, two cardiac arrests, amyloidosis (heart and spleen) – she’s 57.

Eight weeks ago we had the wonderful news that after everything she is in remission. I can’t remember right now all of the names of the drugs she was given but it started with CTD I believe then definitely the Thalidomide was stopped after the heart attack.

She stopped chemo 6 weeks ago and to me seems much more herself though she is struggling with Suspected Blepharitis and is having to constantly care for her eyes. Her eyes are really bothering her.

More re than this though throughout treatment she has complained of a pressure on her face, like someone pushing on her nose and forehead. She thought it was the steroids but now she has stopped them for 6 weeks wonders if it could be something else. She feels like she’s going mad and feels very isolated and feels like her doctors are not giving her any answers or relief.

She would like to know if anyone else has experienced this? How long does it take for side effects such as this (if indeed a side effect) to wear off after stopping treatment. She’s desperate to feel better.

Would really appreciate you’re experiences of this to help her have hope or understand

Thanks

 

Leanne

 

 

 

 

 

[davidainsdaleParticipant]

Hi Leanne

Sorry to hear that your mum is having a rough time at the moment with the treatment. They do say that everyone is different and if in any doubt to consult the experts.

I had a lot of fluid retention whilst on the CTD regime, swollen ankles,legs, tummy and a puffy face. Coincidentally I had my eyesight tested for new reading glasses and the optician said that I had high pressure in my eyeballs. I checked this out with my consultant who said that it was most likely the CTD and once I had finished the course of tablets things did settle down fairly quickly, but it was some months before I felt all the fluid had gone from my system. Although it was difficult for me, due to spinal damage caused by the myeloma, I found that walking did help to get my body back going again.

Hope this helps and that your mum starts to feel better.

David

[Author]

Posts