[emmadan74Participant]

Hi everyone, thanks for accepting me. Don’t really know where to start…I’m Emma and I’m 48 yrs old. I had a routine well woman check, discovered I’d got diabetes, gallstones and now waiting for the results of my bone marrow biopsy and MRI. Unfortunately my Dad was diagnosed with MM 6 years ago, just 3 months after my Mum was diagnosed with lung cancer! So when I heard someone mention “protein in my blood” and “will need further tests” I already had my suspicions. These suspicions were confirmed at the end of November and within less than a week I had my bone marrow biopsy and MRI scan done. The tests were both done over 2 weeks ago now. I have had my next appointment come through and it’s not until the 18th January! I know hospitals are very busy and obviously we have Christmas and New year coming up. But I really was hoping to know the results sooner. I’m scared, upset, not sleeping well and this is becoming quite all consuming at times, despite trying to stay positive. Don’t think I can bear to wait another month! What was everyone else’s experience in getting their results back? Thanks for listening. Emma x

[maidmarionParticipant]

Hi Emma,

So sorry to hear your story. When my husband was being tested we were really lucky that our GP was on the phone to us straight away within a few days giving us the results. I wonder if that would be a route you could try, you might get the answer quicker. Perhaps you could email your doctor telling him/her how you can’t sleep etc? Just a thought……

I really hope the answer comes back negative. Big hugs and fingers and toes crossed for you. Marion xx

[emmadan74Participant]

Hi Marion,
Thank you so much for your reply. I tried calling the GP and they said that there was nothing they could do and I would need to call the hospital! So I did call the hospital and they were very helpful. The results were back and had been discussed at the multi disciplinary team meeting last week. The consultant is due to call me this morning to discuss. I am just relieved I haven’t got to wait another month. Thank you. 😊 Emma xx

[mulberryParticipant]

I’m glad that you contacted the haematology team, you definitely don’t want this uncertainty hanging over you over Christmas & New Year.

If the results suggest you need treatment, don’t panic or loose hope. Myeloma treatment is fairly dramatically improving for the majority of us.
You didn’t say what your father’s experience of myeloma has been, but treatments have even improved in the last 4 1/2 years since I was diagnosed.

But of course we hope that your medical problems are limited to diabetes and gallstones, that sounds enough for anyone to be getting on with.

[kh0305Moderator]

Hi Emma
Sorry to hear you’ve been left waiting and I hope you’ve managed to get some results through. We had results through reasonably quickly when they did finally figure it out when dad was initially diagnosed back in 2013 but I have to say since covid we’ve found things much slower and longer waits and less communication.
Definitely keep chasing and pushing. I hope you get some news soon and it isn’t MM xx

[tony642Moderator]

Hi Emma,

I am sorry to hear that you are having to wait so long for the results. I had to wait 3 weeks for my biopsy results, so I guess that is a normal period of time to wait, but of course, you have had Christmas and the new year in the middle, so that is why it is probably longer than normal.

I know you said your Dad had it 6 years ago, so you have probably got a lot of information about the disease already. However, since then, there have been some significant improvements in the treatments available, and new ones are being developed all the time. Unfortunately, the disease is incurable, but with the right treatment, a lot of people go on for may years to lead fulfilling lives.

We are not Doctors, but we are here to support you through this in any way we can, and dont forget that there is the peer buddy service where you can speak to one of the volunteers who are living with MM if you think this would be helpful to you. You do not have to do it now if you are not ready to, you can access the service when the time is right for you.

Please stay positive, keep your chin up, and let us know how you get on.

Sincere regards, Tony

[emmadan74Participant]

Thank you so much everyone for taking the time to answer my query, what a lovely bunch of people you are. I am very pleased to say that I did get my results just before Christmas and at the moment it is MGUS. So 12 weekly check ups for the time being. Hope everyone stays happy and healthy and thanks once again for your support. Xx

[tony642Moderator]

Hi Emma,

thanks for the update. The good news is that as it is MGUS, there is a good chance that it will not go on to develop into full-blown Multiple Myeloma. Also, the further good news is that they are keeping an eye on you every 12 weeks, so if anything does start to develop, they can give treatment at an early stage.

I know it is easy to say, but for the time being, you can try to put it at the back of your mind and lead a normal life. Good luck with it, and keep us informed as to how you get on.

Keep your chin up.

Regards, Tony

[kh0305Moderator]

Hi Emma,
Happy New Year!
Thanks for keeping us updated and though not the best news, pleased to hear it is MGUS and hope it stays that way for a long time to come!xx

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