[louisebParticipant]

My GP decided to check out my borderline anaemia after doing some routine blood tests. Once checked she was as certain as she could be that it was MGUS so referred me to see a haematology specialist.
He was concerned by my Bence Jones urine result so sent me for further tests.
My results are:
Paraprotein 8G/L IGg kappa
Normal blood calcium
Borderline kidney function
Mild anaemia: haemoglobin 115g/L
Neutrophil count normal: 1.92
30% myeloma cells
No bone legions
If it wasn’t for my kappa light chain level I would have been diagnosed with smouldering myeloma, unfortunately my result is just over 100 , it’s actually 116.
Because of this I’m currently being considered for the more intensive High Dose Therapy including an autologous SCT. The MDT across Leeds and Bradford are discussing my case on Monday.
Is there anyone in the forum who is or has been in a similar position? I’d be really interested in hearing your stories.

[drwatson12345Participant]

Hi Louise, I think you are quite lucky to be diagnosed at this stage, because personally I was diagnosed after months of back problems leaving me quite disabled and unable to work. I am improving now with treatment but still a long way to go. My paraproteins were 20 at the start and my lamda light chains through the roof. Bone marrow plasma cells were 48%, with lesions all over my spine and pelvis. Have you had a bone marrow biopsy?

[myelomamumParticipant]

Hi,

I was diagnosed a month ago after 3 months of tests, i had a plasmacytoma which fractured a vertebrae but have a mri scan showed mm in tops of both legs and possibly my liver. I too am starting 3-4 induction therapy followed by a stem cell transplant. My paraprotein last month was 12 and bone marrow shows 8-10% plasma cells, i thought this to be quite low but my consultant wants to start the treatment. Im due to start in 2 weeks .. when do you start ? I am really nervous about side effects as my youngest 2 children are 13 and 10 so we have decided to tell them after Christmas xx

[aldParticipant]

It took a hospitalisation for my diagnosis despite several trips to GP so seems positive that the GP has been able to get this identified. I’m in the RADAR trial which will likely be explained to you, broader treatment options than standard NHS. Ask about it if they don’t mention it.

[daffodilParticipant]

Hi Louise,
I was also just diagnosed, after initial blood tests showed elevated lambda and an abnormal FLC ratio. Then a bone marrow biopsy showed 10% plasma cells. Also facing likely first-line drug therapy followed by autologous SCT. Hope you’re coping ok. It is certainly a horrible shock. Wishing you the best.

[glencParticipant]

I was in the same position a year ago. My light chain ratio went over 100 and kept climbing so they recommended treatment. Although it wasn’t an outcome I wanted, I’d had smouldering myeloma for 2 years so had chance to adjust to the possibility. It must be hard for you being hit with an MM diagnosis and the prospect of treatment from the start so you will be feeling very anxious. Over the last year I have done 6 cycles of DVTD chemotherapy. I answered a question under the Treatment section of this forum this morning with more details of that if you want to take a look. I then had a stem cell transplant in May. On the whole, none of it has been as bad as I expected and I have recovered well. I’m currently feeling great and positive. There have been lots of blessings along the way and looking back I consider myself to have had a good year, in a strange sort of way! Lots of my fears were unfounded. Best advice is to take one stage and one day at a time. Don’t imagine how it’s going to be, because I worried about lots of things unnecessarily. Just take it as it comes. I wish you well on your journey. X

[daffodilParticipant]

Hi Louise,
I just wanted to say I hope you’re doing ok. I was diagnosed just very recently too, and still also in the shock stage. It feels like skating on thin ice all day, trying to keep it together without falling. Sending warm thoughts your way.
daffodil x

[myelomamumParticipant]

Hi louise and dadfodil

Hope you are doing okay and getting used to the diagnosis.

Just wondering if you have started your treatment yet ? Mine is 6th january 2025 but i have started on steriods , wow they keep me awake all night with really achy legs .. it would be nice to keep in touch if our treatment cycles are running close together xx

[jonParticipant]

Hi all I have just been diagnosed out of the blue – no symptoms – and am struggling with treatment decisions. Yes to keeping in touch please

[rabbitParticipant]

Hi Jon,

Just to say that many people on this forum have had diagnoses like yours. We have been through the shock that you are probably feeling now. If we can provide information based on our experiences and familiarity with jargon and treatments, it may help you with your decision making.

Regards
Rabbit

[jonParticipant]

Thanks Rabbit,

I have just got a letter to say I need to choose between Dara – VTD with transplant consolidation or DRD as treatment.
Can anyone shine a light on either of these. I have my decision meeting this wednesday

[rabbitParticipant]

Hi Jon,

You say that you have only just been diagnosed but the decision meeting is on Wednesday: unless treatment is unusually urgent, it sounds as though you are being bounced into a decision very quickly.

Abbreviations: Dara VTD = Daratumumab, Velcade, Thalidomide and Dexamethasone.
DRD = Daratumumab, Revlimid and Dexamethasone.

As you can see, the initial phase is similar and many are given Revlimid instead of Thalidomide, which would make them even more similar.

There are plenty of posts here about the stem cell transplant process. In outline: your stem cells are collected from your blood in a process call apheresis and cleaned up. You go into hospital, are given a massive chemo dose which destroys nearly all the myeloma cells and wipes out your immune system, the cleaned up stem cells are then put back into you.

Recovering from the stem cell transplant takes some time, maybe 3 weeks in hospital followed by further recovery at home. It can be – but is not always – tough going. I didn’t have that as it would have put further strain on my dodgy heart. I had Dara VRD: now been in remission for 19 months.

Regards
Rabbit

[jonParticipant]

Hi Rabbit,

Many thanks for that info, perhaps it is very urgent – they did not say. You have made the process very clear. I feel I want to get started soon as since my first haemo app in December I have started getting very mild bone pains and feel more tired than usual but that might be an emotional response as the waiting is quite stressful.

[jonParticipant]

PS anyone heard about a RADAR trial?

[rabbitParticipant]

Hi Jon,

The home page on this forum has a search function: mentions of the RADAR trial are here.

https://forum.myeloma.org.uk/forums/search/Radar/

Regards
Rabbit
PS I am not myself on the RADAR trial.

[Author]

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