We all vary and we all have different personal circumstances and health histories and myeloma can occur in many different forms and in those forms affect people in many different ways, so we each have our own unique problems. For many people the word ‘cancer’ is like telling them they face inevitable and horrible death, but I lost a kidney to…[Read more]

Just to mention that I’m at LRI too. I’m down as MGUS with unexceptional PP but out of range FLC and significantly so with an adverse kappa/lambda ratio. As long as I’m informed what my readings are I’m happy to not receive treatment. It seems that it will only begin if the figures show a significant ‘rate of climb’ and mine appear steady. As…[Read more]

It may not allay your fears but personally I remember little about my bone marrow biopsy except that I felt a slight a slight numbing ache. I may have been offered gas but I can’t recall. I don’t doubt that it may affect other people differently and my own ‘bugbear is having tubes put down my throat and any mention of it makes it in everyone’s…[Read more]

The priority issue is the potential malignancy and though a diagnosis of Myeloma is never good, it will help the hospital to understand the underlying cause and lead them to make further tests. To a greater or lesser extent a large proportion of the population will have these ‘clonal cells’ in their blood and whether they represent a risk is a c…[Read more]

I doesn’t make sense to refuse treatment for Myeloma considering the potential risks. Anyone wishing to hasten their end is making a mistake to choose Myeloma as the way to go to put it bluntly. She is quite fortunate to have it diagnosed before suffering an acute episode. I fully respect the right of anyone to make their own decisions but it’s…[Read more]

You don’t mention whether or not she has any symptoms or conditions that reduce her current quality of life but my concern, if I were in her situation, is that long term, refusing treatment may reduce life expectancy but the greater risk is the  pain and suffering from the conditions she would be at risk of having to endure could last many years…[Read more]

The hospital tried to offload blood collection to my GP surgery but the surgery wasn’t set up to handle it and the hospital don’t support it, and so I no longer take any notice of that. I won’t list all the things that went wrong but the look on the nurses face when I handed her a container with a 24 hour urine collection was a picture, not that…[Read more]

All I’ve ever been told is that my results are ‘okay’. If I hadn’t had copies of my blood test results I wouldn’t even be aware that I have a malignant condition and I would expect to be discharged in due course. Understanding myeloma in all its manifestations is difficult and I have your variation Jan T but at a much less advanced stage. I can…[Read more]

Hello JanT

I have previously had a lot of trouble getting hold of results and I have created a lot of fuss about it. There is history to this as I was treated deplorably when I had kidney cancer and neither I nor my employer were told I had cancer, which I only discovered was known to the hospital when I got my notes. I only mention that to…[Read more]

I did finally get the blood test results. i can only say that my attempts to uncover anything about my illness has been met with a complete shambles, indeed if I didn’t get my results, I would’t even know that I had the illness as all I’ve ever been told is I’m ‘okay’. Based purely on that I’d be expecting to be discharged, and the Consultant…[Read more]

In response to my comment on Patient Opinion I received an offer from the Haematology Department to investigate, and I used the email address provided in the response to make contact. I have heard nothing.

The only concern I have about my eGFR is that the hospital refuse to disclose what it is. Though Myeloma is a complex illness I use four…[Read more]

I think that for general purposes four figures give a decent overall picture – Paraprotein Level – Free Light Chain Level – Kappa/Lambda Ratio and eGFR. Of course the type of Paraprotein and Free Light Chain is relevant but I presume that the hospital can work that out for themselves. It’s not difficult.

If you have other health issues or after…[Read more]

It’s great to hear that you’ve got good news to report after treatment and in some ways, discovering good news by accident is a nice bonus, though I agree that it would be preferable that you know what’s going on. I know the sensation of feeling that there is something existing within your body with the potential to kill you that you should know…[Read more]

It’s a very strange situation in Leicester but I’m not going to back down in wanting to know the results of medical tests because it is my legal right to know them. In fact every NHS hospital has a published policy on the matter.

I have blood tests three times a year and an appointment once a year, so that unless I use the formal process of a…[Read more]

Like you ‘relative’ I am aware of a GFR of 20 being a point at which dialysis becomes a potential outcome and though I use these snippets of information as a guide to when I must ask questions (being a FLC sufferer too) they aren’t necessarily fixed determinants of treatment because of the complexities of Myeloma, its treatment and health…[Read more]

There are only four figures that interest me but giving me the print out is probably easier than isolating those individual results.

The minute I am forced to submit an ‘SAR’ it’s a whole new ‘ball game’, so to speak, and they are legally obliged to provide exactly what I ask for within a set time limit. It is therefore best they do it the easy…[Read more]

I regret to say that PALS and the whole LRI complaints procedure is farcical. In simple terms at expiry of the statutory period to provide the information I have requested by SAR – they are breaking the law. PALS don’t understand this and they believe they can grant themselves extensions of time. They can’t. It’s easiest if I demonstrate the…[Read more]

The point is that if I can’t trust them to give me the results of my tests, what can I trust them to do ?

I have discovered that their whimsical reports of ‘okay’ cannot be relied upon to have any connection with reality. Last time I was told everything was okay, my results were significantly worse.

I believe that I have it in writing that…[Read more]

My own diagnosis came about as a result of what turns out to most likely have been the joint effect of what was a hernia and a prolapsed (slipped) disc neither of which I knew about, but this has resulted in the diagnosis of a blood abnormality indicative of a malignant process.

I’m not receiving treatment, though I would presume that I have a…[Read more]