[jiffieParticipant]

Hi Gizmo, I have recently been diagnosed with Myeloma though I think it had been active for a few years prior to this. I remember an appointment with my GP a few years ago when she said there was something strange going on with my white blood cells but did not follow up with it. My diagnosis was more by chance than design, tbh my GP’s really didn’t have a clue as to what was going on and it wasn’t until I was rushed into hospital as my sodium levels were close to critical, and it took them 3 weeks to realise this and do something about it before they would refer me. Once in hospital they had diagnosed my condition in 2 days with a bone marrow test done on the 4th day.

I do realise that GP’s have a hard job, especially at this time but the alarm bells had been ringing for some time and it seemed like they were just fobbing me off. If I knew then what I know now I would have been more forceful on insisting that they should refer me for further tests and analysis at the hospital instead of waiting until it became critical, the GP I last saw apologised to me for the bad care I had been given and told me I was a couple of points away from comatose or death.

So maybe you should be a bit more insistent that they treat you as an urgent case, certainly sounds like you are. It was the extreme pain in my back and chest which first made me go to the GP, since found to be 3 compressed vertebrae and a thinning of the bone in the humerus in my left arm. Next week I am getting a pin put into the bone to prevent fracture. So time is of the essence, don’t let them fob you off.

[jiffieParticipant]

I found this, looks like a decision on use for new patients may be taken Jan 2022. This is conditional on the patient being eligible for a SCT. This is the same as it is in Scotland atm and was introduced here in Jan 2021. So fingers crossed for all you people south of the border that they approve this.

https://www.nice.org.uk/guidance/indevelopment/gid-ta10449

[jiffieParticipant]

Hi, yeah I saw that at the time, I thought it had been approved recently though in England and Wales, maybe it was another cancer treatment and I mixed them up.

[jiffieParticipant]

Hi Sachbarnes, it’s on the NHS, I’m in Fife in Scotland. The main centre for cancer here is based at the Western General in Edinburgh, this seems to be where all the cancer cases are discussed by a team of consultants who then pass on their recommendations to the local teams to take forward.

I’m currently getting outpatient treatments at the Queen Margaret hospital in Dunfermline, the last part of my treatment, stem cell transplant, will be at the Western General in Edinburgh.

[jiffieParticipant]

Hi Samella, sorry to hear you have also been diagnosed with this condition, it came as a total shock to me and I would guess it was for you too, hard to come to terms with. I sort of knew there was something seriously wrong but was reluctant to admit this to myself until the diagnosis.

The good thing for me is that I have been lucky that there is an excellent NHS setup in my area which deals with patients with all variants of cancer. As soon as I was diagnosed the guidance and very quick time they got me onto a treatment schedule has alleviated the anxiety I was feeling. I hope that you have had a similar response where you are.

It has helped finding this site and reading others experiences as a Google search of the condition brought up a very negative and depressing prognosis. From all accounts the prospects of a decent length of remission with follow on treatments when it returns are very good, especially as there have been a lot of developments over the past few years with new treatments being available.

I had my 2nd treatment on Friday and was talking to the nurse about this, she said they had started using the treatment I am on about a year ago and they have been getting really good results using it. In particular she said the addition of Daratumumab has made a big difference in the results they have been getting.

So there are reasons to remain positive, though I know it’s not going to be an easy road to walk, if the end result is a decent length of remission then it will be worth going through it. I know there will be dark days, I’ve already had quite a few of them! So just taking it a day at a time and grateful for the support I’m getting from the cancer team and my amazing wife who is going through this with me.

Anyway, I hope you are coping with things, would like to hear your story and how you are feeling about it all.

[jiffieParticipant]

Hi Mulberry, many thanks for your reply, it was very reassuring and informative. I have been doing a lot of reading re this condition and as you indicated there has been a lot of advances made in available treatments over the past few years which bodes well for us new members of the club!

I had a wee bit of a reaction on the area around the Bortezomid injection a few days later, nothing too bad, an area of skin was bright red & hot to touch but was not sore or itchy, it has more or less faded now. I informed my team and they said it was to be expected and were not overly concerned.

I go for my 2nd treatment today which is another Bortezomid injection and both injections again next Tuesday.

Thanks again for your reply which has alleviated a lot of the concerns I had. I will be looking at some point to join a local group to share experiences with others who have this condition.

[jiffieParticipant]

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