Newly diagnosed, and full of questions

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Hi all

I have recently being diagnosed with myeloma. I won’t bore everyone with my full storey but basically was initially diagnosed with a sarcoma of the sternum and following a sternum biopsy turns out it’s myeloma. I have been advised by my consultant that I have caught this cancer at a very early stage which is very rare so with this in mind I’m pretty optimistic at present.
I am due to start my first bout of chemotherapy later this month I’ve been advised this will be weekly for 3 weeks then 1 week off. This will be continued for 4 months then a planned stem cell transplant.

Does anyone have any advice for me or has anyone been through this recently that can advise me on how this will effect me physically, until very recently I’ve been a very active and quite a fit 47yr old fella, but over the past 4 weeks I can’t seem to shake off a feeling of constant tiredness and aches, I am also not really sleeping even though my GP has got me on a sleeper aid. All advice will be very much appreciated

Vespa 11 months ago in reply to Kizi

Kizi. It gets better I often think now what I went through Almost crawling up the stairs to bed I took any food that I could. Milk shakes Chocolate. Ice cream was a blessing! No energy. It slowly comes back. Just vacuum the car today. Cut the grass. But still get fatigued. Kevin

Kizi 11 months ago in reply to Vespa

Thanks for that I cannot wait until I can face food again stop the cramps I my stomach the fatigue is a killer as you said tryingto walk up the stairs even trying to get to the loo hopefully not to long until I start eating again

GadgetOllie 11 months ago in reply to SatAround

I don't know to be honest, I know its run by Leeds Uni.
My local hospital seems to do all the donkey work around my care but I get the impression I will have to go to a different hospital for the SCT side of things by the way they have been talking.

Official trial info:

Myeloma is a cancer of the bone marrow cells. Combining stem cell transplantation (SCT) with new drug treatments has shown to improve outcomes in myeloma patients. Some patients have been found to have genetic abnormalities in the myeloma cells and these ‘high-risk’ patients do not respond well to standard treatment. Some patients without these genetic abnormalities are also known to not respond as well to initial therapy. This study will investigate different treatment combinations for these two groups of patients. It will also investigate whether a third group of patients, who do respond well to initial treatment, can receive treatment for a shorter period of time without coming to harm. This study gives access to new treatments (the unlicensed drug isatuximab) and treatment combinations.

All participants will receive the same initial induction treatment and during this time will have genetic tests to determine whether they have ‘standard-risk’ or ‘high-risk’ disease. Following this chemotherapy treatment participants will receive ASCT (A stands for autologous, meaning that the participant's own stem cells are used).

After induction treatment participants will be allocated to a second stage treatment group based on their genetic risk, high-risk or standard-risk, and on how well the myeloma has responded to the initial treatment. Each treatment group will then receive different combinations of medication to investigate their benefit. Treatment will comprise of combinations of isatuximab, bortezomib, cyclophosphamide, lenalidomide and dexamethasone.

Newly diagnosed myeloma patients, above the age of 18 who are suitable for SCT will be eligible for the study. Patients will be required to have bone marrow, blood and urine tests throughout the trial. Participants will also be asked to complete questionnaires about their quality of life. The study will be conducted in multiple hospitals throughout the UK.

RADAR study is funded by Cancer Research UK, Celgene and Sanofi.

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