Hi, just found this forum. Im 50 and a blood test fiund i have raised protein. Ive had a skeletal survey and an appointment with haematologist, which i thought was to discuss results of scan.but he had the scan but it hadnt been reported, so he couldnt tell me the results.he went on to say i need a bone marrow test as he thinks it myloma. That is booked for 28th nov. I still havent had reaults from scan which was 17th oct.ive got no symptons other than heavy periods(i have fibroids) and was anaemic ,but been better since taking iron supps.im just so petrified and not coping well at all with the worry .
I can understand that your terrified feel free to ask any questions
I was 49 when I was diagnosed I thought I was going to see haematology to have my gall bladder out as I had been in A&E previously with a gall bladder infection.
In haematology appointment I was told I had myeloma and I did a bone marrow biopsy there and then
Prior to this I had no symptoms that stick out apart from being very tired all the time
Addicted to ice cubes and a pain in my knee and slight lower back ache
Just thought it might be menopausal
I don’t think I had time to be surprised at my diagnosis
Here is a link to Myeloma Uk
Info pack for newly diagnosed
Oh @Sarie I am glad that you have found us.
I find being in limbo and not knowing so scary and petrifying.
I find there is a lot of waiting around and not knowing in the medical system.
The Blood Cancer UK support line is there for you on 0808 2080 888
Don’t be hard on yourself I think that your feelings are very natural.
Please do keep posting and be ever so kind to yourself and do nice things to divert yourself while you are waiting.
I guess im in shock at how that he can say ive got it from one blood test. Bone marrow test is next week. I do t even know how or what to expect from that .thank you for your replies x
He is gathering all the information
Bloods have risen the scan will show if you have any lesions (bone damage) and the bone marrow biopsy will tell him how much myeloma involvement there could be for example 20.%
It’s an overall picture of what’s going on or not
When you go for the bone marrow biopsy they will take samples from your hip so you will lay on your side for this
It is painful I did my first one with local anaesthetic but I would highly recommend gas and air. You can also have sedation.
Bit of bruising and local pain for a few days paracetamol will help
I drove myself there and back for the biopsy
I’m really pleased you have reached out to us all. I can see you’ve already been given some wonderful support. How are you feeling today?
We appreciate how difficult this time of being in limbo can be, so do know that if you need to talk things through with us, we are only a phone call away- 0808 2080 888.
Look after yourself, Lauran
How long does it take to do?
The actual procedure doesn’t take long around 10mins
It’s s few minutes getting comfy and all the bits they do before procedure
Then finish with a big plaster etc I’m guessing 20-30 minutes altogether
I had gas and air with mine.
When finished I had a cup of tea and a biscuit before leaving
Sedation if you have that you will be kept for a couple of hours before you can go home
I always think it is worth @Sarie telling them how nervous you are feeling.
Try and relax which is easier said than done, I know.
Be kind to yourself
Agree with you @Erica
Good evening @Sarie and everyone else. I had my second BMB yesterday morning and, I have to say, that this experience was much better than the first one a little over 5 & 1/2 years ago.
Knowing what to expect this time I had a chat with clinician before she started her work, explaining that the local anaesthetic didn’t “take” last time, at least not until well after the procedure was complete. However the Entonox helped massively, on both occasions. I was able to drive part of the way home this time, until I started having a few twinges when, most unlike me, I did the sensible thing and pulled over allowing my daughter to finish of the drive home.
I was diagnosed with Essential thrombocythemia (ET) in March of 2018 and have been on Pegasys injections ever since to control my platelets. This latest BMB is to confirm the progression of my Essential thrombocythemia (ET) to Secondary Myelofibrosis (MF).
Good Luck with your BMB and don’t be afraid to ask any questions or to tell them of any “fears or anxieties” you may have about the procedure.
As always, take care, stay safe, be kind to yourself and keep on smiling.
I’ve had about 23 bone marrow biopsy procedures in the last couple of years from when I was diagnosed with Acute myeloid leukaemia (AML). I was also terrified of this procedure but it was a breeze with help of gas and air and having a conversation with the nurse in the 10 minutes of it occurring. Who knew a chat about Marks and Spencer sandwich flavours could make this so much easier! I can see you’ve had several replies already which is great. Relaxing also helps and I promise it’s nowhere near as bad as it sounds. Wishing you all the very best and the team will be amazing.
Thank you for your reply, that has actually made me feel a bit better! I will let you know what we talk about
Hi @Suenew1967 a great big welcome to our forum and you have already shown one of the advantages to our forum by sharing your valuable experiences of your bone marrow biopsies and you certainly have had some.
I really look forward to hearing more about you so please do keep posting.
Look after yourself
Thank you @Erica for the lovely welcome Looking forward to supporting whoever needs me
@Sarie you are more than welcome! It was a bizarre subject and I’ve talked about many other subjects whilst going through the procedure. Please do let me know, it can also get quite funny trying to chat whilst under the influence of gas and air, used to make me chuckle a little! Please let me know how you get on and your chosen subject
My clinical nurse sits opposite me holds my hand and encourages me with breathing gas and air
I breathe so much that I space out
I can see myself now gazing into her eyes and hanging on to every word
I cry after I no idea where it comes from cup of tea and biscuit sorts me out