[jinsuffolkParticipant]

Hi All,

My father is about to be diagnosed with Myeloma, doctors are >80% sure this is his problem following two lots of blood tests and the next round along with Bence Jones urine analysis is going to be used for better understanding..

Already the GP has booked my father in for an appointment with the MacMillan Cancer Centre wing of the hospital for next Monday (not tomorrow) to discuss what happens going forward but hasn’t given too much detail yet since has told to me (I have consent to discuss fathers case with doctor) that he wants all tests to come back and for a specialist to break the confirmed news who will be able to answer specific questions about staging and prognosis etc.

My father has increasingly, since late November, had a lack of mobility, back and hip pain for no apparent reason, getting increasingly weaker, very thirsty, infection needing to be treated by antibiotics and a bit of confusion, numbness and loss of appetite. Initially his symptoms were only mobility, leg and back pain and numbness but the others have slowly started to appear. He’s also had two nosebleeds in the last two weeks, which he’s never had any before in his life.

He recently lost his wife due to a tragic accident and a mistake by the NHS which is the subject of an inquest by the coroner and therefore is very apprehensive about trusting hospitals, however I have to say the local GP has been amazing and has really pushed the boat out to help him.

He still believes that he is going to be back to normal soon, which the doctor has advised us to not encourage this view but at the same time try and stay as positive as possible until the specialist appointment happens and to steer him away from making any big or expensive decisions until he has seen his specialist in just over a week.

So I was wanting to ask, for those of you who have Myeloma, or have relatives/friends who have, have you seen any improvement in mobility upon commencing treatment? I read lots of things about how the cancer is a stop start type of cancer in nature, but my fathers number one worry is mobility. As an only child and my fathers relatives being dead apart from his brother who is 80, his care is going to fall onto me, so any help you can give is appreciated.

What kind of help does the NHS normally give? Generally would my father need to stay in hospital for Chemo or other things or generally is treatment given as an outpatient?

Many thanks for all your help and best wishes to all

J

[jinsuffolkParticipant]

It’s worth saying he’s going to the MacMillan Cancer Centre in the hospital to see a consultant haematologist to confirm the diagnosis who will most likely order more tests, but the tests that the GP has ordered thus far are on the advice of a haematologist so that by the time the consultant sees my father the bloodwork is already done.

[jim2539Participant]

Hi, I was virtually housebound and for a short while actually gave up driving, in a lot of pain and also wearing a back brace, once the chemo started mine only required a once a week visit to the day unit for a velcade injection, which is a piece of cake, and two days worth of tablets which you take at home, seemed complex when introduced to the regime, but a couple of weeks into it no problem, however treatment and chemo medication varies from patient to patient. I can now drive again, and walk small distances, I no longer take any pain killers, as my back pain is only light, unfortunately I cannot lift anything.

[mulberryParticipant]

All myeloma patients will recognise the fear and uncertainty you as a family are experiencing during this period of diagnosis.
I was diagnosed in Suffolk (I suspect at the same hospital) nearly 2 years ago, and wish I’d had confidence that is feel so well, or even be alive now, but my GP had warned me I might not be alive in 3 months! As it is I lead a normal life, albeit with a level of fatigue I didn’t have prior to myeloma. I chose to be treated at Addenbrookes in Cambridge as I was told a stem cell transplant was a good option for me, and I was prepared to have extra travelling time to be treated by a myeloma expert.
The average age on diagnosis is about 70 and incidence peaks in 80s but people of these ages can be successfully treated and symptoms reversed even though ultimately the myeloma will come back.
Treatment is mostly done as an outpatient although we are prone to needing hospital stays as a consequence of low immunity (although my only inpatient stays have been related to my stem cell transplant.)
With best wishes
Jane

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