I was called in to my haematologist today to be delivered the news that i have multiple myeloma. It’s just 4 weeks today since my A&E visit, so a lot to process in a very short time.
The PET scan i had done on Monday showed lesions on my sternum, skull, shoulder and arm.
I go in on Monday for a biopsy on my sternum which is going to be horrible i imagine!
And then treatment will follow.
Im devastated for my children and my daddy as theyve all been through a lot of heartbreak in life already.
One day and one step at a time is the only way i guess.
Thank you so much to all of you for your kind words and advice over the past few weeks. I really appreciate it 
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Oh @Emma13 that’s a lot to take on, I was in shock for a long while after my diagnosis
You are not alone you have your forum family around you.
You are so right it is one day and one step at a time , I think it is the most manageable way.
There will be a lot of waiting around and medical speak
The main thing is you be very kind to yourself and keep posting
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Hi @Emma13. What a lot to take in with the added anxiety about the up and coming procedure. You must be feeling exhausted.
It’s so hard to begin processing it all when everything is moving so quickly I imagine.
It’s so tough for our family as well and off course you will worry about them.
It really is small steps and that’s ok.
This is a place where you can just say how you’re feeling and we will all be here to support you.
Please keep posting and let us know how you are doing.
Sending lots of love X
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Im really sorry you had this confirmed today, it is overwhelming with all the appointments and scans etc that follows but keep everything in the day, dont worry about things to come. As i told you before, a year and a half ago i was in your shoes and am now in remission and getting on with life again, you will too. Be good to yourself x
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Hi
Myeloma although it’s not curable it’s very treatable and there are many people living with myeloma. I’m 7 years into my life with my myeloma
Each persons myeloma is unique to them
I can understand getting the diagnosis after 4weeks since A&E
Similar I found out I had myeloma 6 weeks after an A&E visit and it was a whirl wind of bone marrow biopsy, CT scan MRI scan and starting chemo in the space of a week.
I haven’t had a sternum biopsy I don’t know what that entails.
I did have many lesions at diagnosis (very severe boney disease) my kidneys were on the verge of collapse I had severe immunosuppression
My children were my will to get into some sort of remission and I would do anything to get there
Take this time to let it start to sink in and be an advocate for yourself ask lots of questions
I was interested in the science of how chemo worked on the pesky myeloma cells
There is no right or wrong way of dealing with your diagnosis you will experience many emotions
Take care of yourself
myeloma uk is a great source of information
I will try and help where I can 
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You are all so kind and supportive. Thank you!!
The sternun biopsy is a bone marrow biopsy but of the sternum instead of hip. That’s where my biggest lesion is so its already extremely sore - not looking forward to it at all 
But i know im going to have to just get on with it all now. Theres no going back!
Ive been taking both morphine liquid and tablets since friday so that should stand by me for tomorrow.
Any tips ahead of a BMB would be much appreciated
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I don’t have any tips for sternum
My experience of bone marrow biopsy in hip I have gas and air
There is sedation as well.
In the hip the area gets bruised and sore for a couple days it does bleed a little too. A big plaster is put on and I couldn’t shower for 48hrs
I drive myself there and back.
Keep on top of pain relief
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I also had mine in the hip, ive got no tips, it wasn’t pleasant, all i can say is it will pass. Good luck tomorrow x
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Hi @2DB thank you so much for asking. I’ve had a rough week, but a better day today. The biopsy on Monday was into the sternum which is where I’ve been having the most pain. It was done ‘guided’ so I was lying inside the CT scanner while the doctor marked the spot and let’s just say, I sincerely hope to never, ever, ever have to have it done again. The next day, I’d one performed on my hip bone which is of course the usual route, and although yes it was sore it was in no way comparable to Monday. The nurse was laughing after as I kept saying on repeat ‘it was bad but not as bad as yesterday.’ I’m on slow release morphine tablets and liquid morphine a week now and I feel like the meds are keeping the pain at bay now today for the first time. So, next step is Wednesday when I go to my consultant to discuss the biopsy results and get a whole bigger picture of the overall diagnosis as well as a treatment plan for the way forward. On another note, my children know now, as does my wider family and I shared a post on Facebook with my readers (I’m a novelist) so I feel a bit more at ease, and that this is real, now that others know. The kids have been amazing. They are all young adults apart from the baby of the house who is 9, so I do feel very well supported. The wee man doesn’t know a whole lot but he does know I’m sick - I think that’s enough for right now, though I’ll keep him informed honestly as we go along.
I still sometimes think this is all a bad dream. It’s like stepping into a whole new world and learning a new language. Thank you so much once more for checking in on me. It means a lot x
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Oh @Emma13 it sounds as if you have had a really rough week.
However I am so glad you have told your family and your Facebook followers, they can be such a support and that must be a weight off your mind and just telling your wee one what he needs to know sounds great to me. Perhaps just tell him to ask questions if he is concerned and keep him in the loop.
I agree it is a new world who speak a foreign language, I have never got to grips with it but I just ask for clarification if I do not understand.
The main thing is to be kind and look after yourself and please do let us know how you are getting on. xxx
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Like you Emma I was diagnosed on Tuesday by a telephone call from my GP. I don’t know what is in front of me and can’t find any data on MULTIPLE Myeloma. I was wondering if you could help me with this. I am a 69 year old woman and recognise that there are not the same treatments available to me due to age and further disabilities which I have. Any help you can give me will be much appreciated. Kind Regard Rae
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Hi there. im sorry you too have myeloma but be heartened by all the positive stories here. Ive met a lot of people on my journey all much older than me, im in my 40s but they all seem to get the same treatment except maybe for the stem cell transplant. I started off with twice weekly bloods being taken and had chemo injections twice a week. there was a lot of meds to take at home too. Eventually this lessens to a degree, the treatment seems well tolerated by most people with little side effects. Theres lots of different meds out there for myeloma so they will find something to suit you. Its all overwhelming at this stage so just let them guide you and try to relax as best you can. Big hugs x
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Hi @Jimfud12 I am so glad that you have found us, welcome.
Here is the link to the information from the Blood Cancer UK website
Myeloma | Blood Cancer UK
Here is the a link to Myeloma OK
Help and support - Myeloma UK
I realise you say the word ‘Multiple’ and I will copy your post to the Blood cancer UK nurse advisers @BloodCancerUK_Nurses as I am not medically trained to help you.
What I would say is that we all have a range of blood cancers and many of us share similar fears, thoughts, feelings and practicalities
Perhaps write a list questions for your next appointment.
Really look after yourself and please do keep posting how you are getting on
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Hi Emma
There is so much to take in isn’t there it’s a whirlwind of every emotion going along with a new language to learn.
I will be thinking of you Wednesday
Your family sound amazing support and I found being honest with my kids helped them make sense of the situation they were 14/19 at the time.
Kids are very intuitive and know something is wrong/going on they are like sponges.
Let us know how you get on
Pain wise if you find it getting worse ask for a referral to palliative care they are great for helping with pain relief and living
Take care x
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Hi @Jimfud12
I’m going to link you info pack for newly diagnosed from myeloma uk
What treatment will I have?
Your myeloma treatment will be co-ordinated by your specialist doctor (haematologist). They’ll discuss all your options with you and together you’ll decide what’s most appropriate for you.
Here are some of the most commonly used initial treatment combinations:
- Daratumumab (Darzalex®), bortezomib (Velcade®), thalidomide and dexamethasone (known as DVTD)
- Bortezomib (Velcade®), thalidomide and dexamethasone (known as VTD)
- Bortezomib (Velcade®), cyclophosphamide and dexamethasone (known as VCD)
- Lenalidomide (Revlimid®) and dexamethasone
- Melphalan, prednisolone and thalidomide (known as MPT)
- Cyclophosphamide, thalidomide and dexamethasone (known as CTD)
- A different combination, via a clinical trial. Find out more about clinical trials and novel drugs
The initial course of treatment tends to last four to six months. After this, some patients may be suitable to go on and have high-dose therapy and stem cell transplantation.
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Thanks very much Bitsy for your very helpful reply. I am a bit all over the place just now and had never even heard of this type of cancer before. It is the fear of the unknown at this stage. However, you have brightened me up with your reply and the positiveness shown though it. It has also been very uplifting reading peoples’ stories and information on the forum. I will also do as a lot of people have advised and write down questions for the consultant. Kind Regards and Stay well xxxxxx
Rachel Dempsey
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Try to stay away from google and stick to nhs sites or www.myeloma.org.uk, remember anything you read online isnt a reflection of your myeloma, eveyone is different and the statistics are just that. statistics. Theres a lot of out of date stuff there too as myeloma treatments have really improved over the last few years. I found when i was first diagnosed i stuck my head in the sand i just didnt want to know, but over time i was able to read things about it. Be selective! 
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Thanks again for that really good advice. I have to say that I don’t go onto google at all and the only sites I have looked at are Blood Cancer UK and Myeloma. Through these I have been made t reaise that over the past five years a lot of new developments have happened and further research is going ahead. This is vey good news. Stay well and Take Care xxxxxxx
Rachel Dempsey
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