Myeloma

DearKezzie75, I’m sorry to hear you have been confirmed as having myeloma, you will now begin the process of expectance that every mm patient has to goes through. Although it isn’t curable it is very treatable and the latest therapies are delivering the best results in the history of myeloma, so there is much to be hopeful about. Will you be starting treatment immediately ? or are you going to be put on a watch and wait programme. The emotions you are feeling are completely normal, no one ever thinks they are going to diagnosed with blood cancer especially one they most likely have never heard of.

Hi Kezzie,

Welcome to the club that no one wants to join. I hope you will find a lot of support here.

It is not something that any of us would want to experience, but there are lots of reasons to be hopeful when it comes to myeloma. Your head is likely to be a mess for a while, especially with the diagnosis so recent, so please be kind to yourself and take things easy, and any questions you might have, please ask them, I’m sure there will be someone here who will try and help you.

Greg

Hi Jane. 

Thank you for your kind message. I feel silly worrying when it's not terminal. Everyone has said to me "At least it's not terminal" but to me it's still cancer I have, not a cold. No it's not terminal, but I have still got to have treatment and treated for cancer. Sorry I am still in shock I think. I am starting treatment in January. Injections and tablets. 

Kerry xx

Hi Johnty. 

Thank you for your message. Yes it is always the dreaded word to hear from a professional, I never thought it would happen to me. I am starting treatment in January, injections and tablets. I am finding myself that I am very tired, is this normal? How do people with Myeloma cope with working?

Kerry xx

Hi Greg. 

Thank you for your message. It is so nice to know that there are alot of people out there to discuss the questions we have, however how little or big. I am very new to this and not sure what to expect about anything really. I get very tired, is this normal?

Kerry xx

Hi Kerry,

The tiredness is likely to be due to anaemia which is a classic presenting symptom of myeloma. The dodgy plasma cells start crowding out the good blood cells and so your red blood cell counts go down, which then leads to tiredness as you don’t have enough red blood cells going around your system (they are the ones that send oxygen around your body). In my experience, things really improved when the treatment started and the dodgy plasma cells started to be eradicated, allowing space for the good cells again. I’m really hoping that you’ll find the same.

Greg

DearKezzie75  I second everything that Greg has said. I assume you will be doing a combination of velcade and dexamethasone and possibly one other therapy. I found the velcade wasn’t a problem but dexamethasone which is a steroid can make you a bit grumpy and occasionally over emotional, with a little bit of insomnia thrown in, so if you experience any of the above don’t worry it’s quite common. As Greg says once the treatment kicks in the tiredness should abate. You will soon get into the rhythm of having your treatment and will be able to work your normal life around it. As for working you will have to wait and see how the treatment effects you and then go with the flow. In regards to people saying well it’s not terminal, that is a factious remark and based on total ignorance of what it means to have blood cancer, and should be disregarded. Myeloma would be a challenge for anyone and is most definitely not a walk in the park.