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Myeloma

Myeloma is a cancer of plasma cells in the bone marrow. If you're suffering from myeloma, or know someone who is, join this support group.

Would love some advice please

Teegy
Posted by

Hi all 

I have joined this site today as yesterday my mum was given the news that she has myeloma. Although she has been poorly, due to other health issues we certainly wasn’t expecting this. Her doctor has told her that she will get an appointment within the next two weeks to see the haematology department and start tests. She turns 80 in April and is starting to ask me questions about tests etc, which I have no clue really. Was hoping someone could maybe shed some light for me please.

Thank you

greg777
Posted by

Hi Teegy,

Welcome to the forum, although I am really sorry to read about your Mum.

Most of the tests for myeloma will be on the blood, so your Mum may need regular blood tests to see how things are going. They may also suggest a bone marrow biopsy to assess the extent of myeloma cells in the bone marrow and may perform certain body scans to assess any bone damage. The bone marrow biopsy can sometimes be painful, but they have good pain relief options so your Mum should not be concerned.

The initial diagnosis can be a very scary time, so my heart goes out to you. There are lots of great treatments out there for myeloma, so hopefully your Mum will get on one that’s best for her and which will put the myeloma back in its box.

Wishing you and your Mum all the very best,

Greg

Teegy
Posted by

Greg

Many thanks for your reply and thank you for the information much appreciated. I know the doctor said this isn’t curable but treatable. Does this all depend on the severity the myeloma is at? I think my mum is assuming the worse as the doctor said she would have to have chemotherapy, but you have said there are different treatments, so chemo isn’t necessarily definite then? Sorry for bombarding you with lots of question, as you would be aware, hearing the word cancer is a shock and as this is the first time I have had to deal/help someone I’m pretty naive.

Thank you again

greg777
Posted by

Hi Teegy,

Unfortunately, there is not enough evidence yet to suggest that myeloma can be cured, but you can have many years of remission - I am over 4 years in remission now - and you can live pretty normally during this time, so it is not as bad as the diagnosis might have been ten or twenty years ago. 
Treatments are developing all the time and I might be out of date now. From what I know, the most recent developments are what are called proteasome inhibitors, these are typically injections, and they work by targeting the myeloma cells directly. A lot of hospitals will supplement that with a general chemotherapy agent, these are typically tablet based and often not as strong as other chemotherapy drugs (eg, the patient doesn’t lose their hair) and then sometimes a steroid can be given to boost the patient whilst the treatment is happening. But it can depend on the specific unit what treatment path they decide to follow.

I hope this is if some use, and please continue to ask as many questions as you want, I’ve found this site very useful for my own cancer.

Greg

Johnty
Posted by

Dear

I second everything that Greg has said , but would like to add a few extra things. As things currently stand a velcade based regime is generally used as a induction therapy followed by a stem cell cell transplant for eligible patients, whether or not a patient is suitable for a transplant is not necessarily based on age but on general fragility and other medical conditions, so given your mum advanced years it would seem unlikely she would be offered a stem cell transplant. The good news however is as the average age women live in the uk is 83 years old it’s highly unlikely myeloma will be a fatal illness for your mother. My consultant recently told me that the median survival rate has risen from 5 years to 8 years in recent times and some people live many years longer but as myeloma is such a individual disease it’s impossible to predict who that will apply to. My advice would be to focus on getting a drug regimen for your mother that balances controlling the myeloma whilst also maintaining a good quality of life. 

best wishes

jane

Teegy
Posted by

Jane 

Many many thanks for your reply. This has somewhat made things a lot more positive. She has first appointment at the hospital on Tuesday. I’m assuming this will be to go over certain things etc. I think the initial shock of hearing the C word frightens most. I will go armed with questions and hopefully we will leave there with some sort of plan in place.

Thank you again

Teegy
Posted by

Greg

Firstly that is good news about your remission keep on fighting . It is reassuring to know that people can still live a fairly normal life with this disease and again has made me feel very positive about things. I am not sure what treatment she will have as unfortunately she does have other health issues, polymyalgia and osteoarthritis. Will post on here after her appointment as I’m sure I will have other questions .

Thank you again