That’s fantastic news. It’s a weight lifted when someone listens.
I did have a bmb and I was very nervous for it but I had entonox. It helped massively and I wouldn’t be frightened if I had to have another one. It’s a weird feeling and u might get a sensation that goes to your ankle but I didn’t find it overly painful.
I think we are all in the same boat with wanting to get to the bottom of it. It’s hard for me to think that this is probably my new normal. But on the other hand it could be so much worse.
please keep in touch. Always here if you want to chat xx
I would like to say that I had a BMB last month, I had been so nervous! There is a thread here about BMBs you can look up, I found people’s experiences were very mixed, so it didn’t help me with what to expect (though it was very informative to read). I particularly remember someone mentioning their experience had been OK and they went for coffee and cake afterwards, which calmed me a lot.
In My experience, I felt nearly nothing, just the initial local anaesthetics, which only lasted about 2-3 seconds.
The nurse was very good, telling me what she was going to do next and what I could expect (the sensation down the legs, a sucking feeling ) but I didn’t even feel that. At the start she had already told me that I wouldn’t feel pain, as there are no nerves in the bones (this calmed me too). At the end she said I would probably need painkillers for when I went to bed at night, but I didn’t even need that. I had gas and air though, and would recommend it.
Hi @Nichola75 and everyone. I am going for my BMB today. Not looking forward to it but I know it has to be done. What is the usual wait time for results?
Usually 2-3 weeks - I found the build up much worse than the actual procedure, so try not to work yourself up - and remember the practitioners do this thing many times in a day so try and absorb some of their calm!
Just popping in to say I’m thinking of you today. You’ve got a lovely group in your corner on this thread, and it’s really nice to see @jsc123 passing on what helped him, having started this thread feeling so cut off himself.
On the results, jsc123’s experience is a good guide, but how long it takes can vary, and your team will be the best people to tell you. If you get a chance while you’re there, it’s worth asking them when and how you’ll hear, whether that’s a phone call, a letter or a follow-up appointment. That way you know what you’re waiting for.
You said before that it’s the uncertainty that gets you overthinking, and the wait can be one of the hardest parts - you are always wwelcome to post here with whatever is on your mind!
Do let us know how you get on.
Take care,
Ceri - Blood Cancer UK Support Services
I hope you’ll feel reassurance to hear that many of the feelings you have described are exactly the way I felt when I was diagnosed two years ago. … and still have days when I feel overwhelmed now. I am certainly more anxious than I used to be and even more aware of how important it is to be as physically active as possible even if it’s just a short walk - and how it’s important to be socially active even if you don’t always feel like it! I would also advise you to get your B12 levels checked - mine dip regularly now since being on Hydroxy treatment and low B12 can add to feelings of anxiety and fatigue and general feeling of weakness - I only found this out after a few months of feeling absolutely wiped out and just assumed it was the hydroxy side effects - but now with B12 supplement I’m doing much better so just something to bear in mind. Finally this forum is a great source of support - I certainly don’t know of anyone who has my strain of blood cancer and that can feel quite isolating so seeing other people’s comments and feelings on here is often helpful.
Thank you for replying Anne Marie, that is reassuring.
This week I had the letter for my first check up appointment with the consultant next month, brought a lot of nasty feelings up I was in the process of parking, but it’s something I have to get used to. I can deal with the fatigue, it’s just the brain fog and confusion I get sick of, like I’m unable to process more than one thing at at a time all of a sudden!
A great thing this forum, and my reminder letter has led me here once more. Thanks for the tips on B12, I’ll look into it and ask about it next month
It was ok, wasn’t as bad as I expected. It’s just the waiting now. Hopefully it won’t be too long. It can take up to 4 weeks! Than you for your message. Take care, Jenny.
I had a biopsy 3 weeks ago and received a phone call from my consultant today saying that I need to have another bone biopsy as the other one was inconclusive. Has this happened to anyone else? This is rather annoying that I have to go through this all over again and wait again! In the meantime I have been put on aspirin because I had to go to A & E two weeks ago due to be woken up with burning sensation in my head , going into my jaw shoulder and arm , heavy chest and a headache. Anyhow by the time I got seen the symptoms had mostly subsided. I’ve had a brain scan and corotid artery scan which are clear. I also have days when I can’t walk because my legs are so weak. The left side weaker than the other. I am wearing pressure socks which helps a bit. Has anyone else experienced any of this?? Also I’m having drenching night sweats.
Hello again there @JAlex20, how frustrating to need another BMB after just having one! Rather annoying indeed, but sadly not entirely uncommon as I’ve read other forum members have also needed repeat BMBs. If you would like to find others who have commented on BMBs then you’ll find threads like the following using the search box at the top: Bone Marrow Biopsy
I’m glad to read you’re taking aspirin as it tends to be prescribed for those of us living with Myeloproliferative neoplasms ('MPN') to help thin our blood to make it easier to move around our bodies. Hopefully it’ll come to decrease those nasty-sounding sensations that took you to A & E. Glad to read those scans came up clear too.
Personally I have experienced a sense of my left side feeling weaker, especially after a heart attack many years ago. The strength came back though. I’d say please always have any sensations like these checked out by a specialist, call NHS 111.
Not to alarm you but as blood clots are our main risk with Myeloproliferative neoplasms ('MPN') we need to stay vigilant, just like you have been. Any odd pain in our body, and my haematologist says any severe pain in one limb but not the other, needs checking out as it could be a blood clot. So I’d say keep up the great self-care and let a specialist or clinical nurse specialist (CNS) know if you have any new or changing symptoms.
I’ll put the number for the lovely Blood Cancer UK nurses here as you can receive a callback from them about any of these queries, just leave them a message on 0808 2080 888.
Keep us posted please @JAlex20 about how you get on, and I’d say keeping yourself busy with distracting activities between now and the next BMB and its results might help take your mind off these very understandable worries a little. I remember getting into watching old film series when I awaited my BMB results
Thank you for this. I will try to keep busy whilst I wait and report any pains etc. It has been very difficult to get to the point of getting scans and more help. We’ve had to push for X-rays etc on my chest and such. It really shouldn’t be like this. Most of the medical team that have seen me are great but I don’t know if anyone else has experienced this but they are quick to pigeon hole things. I have been going since April telling them something is majorly wrong. I was working full time and an athlete who has gone from being fit to the opposite end of it. It takes for me to go into A and E for a third time and for me to not walk for them to send me for more tests. It just seems like a major event has to happen before action is taken. Anyhow, thank you for listening and your kind words @Duncan
Oh you’re very welcome @JAlex20 and I really feel for you with those waits for testing and results. It’s unfortunately familiar to me having a specialist downplay my blood cancer symptoms. I actually changed haematologist as I stopped being able to trust my first rubbish one after too many errors on his part. He kept telling me that Polycythaemia vera ('PV') is not blood cancer, that hydroxyurea is not chemotherapy, he did not mention its risks to (perhaps too much info here!) sexual partners while mine was sitting right there during my diagnosis, and what made me get rid of the doctor was when he’d forgotten he’d already prescribed me chemo! All that to say that sometimes our specialists actually don’t know what they’re talking about and to trust our instincts.
So I’d say that you’re sadly not alone around the forum in needing to chase up testing, and speediness and thoroughness of testing does seem to vary around the UK. Some of these tests need sending to specialist departments, often in university hospitals, and these also vary in how fast they process results.
I wonder if you’ve heard of PALS? They can help us liaise with our NHS Trust and specialists, but perhaps it’s bit soon to contact them, maybe have a look to see whether they can help: What is PALS (Patient Advice and Liaison Service)? - NHS
I think I shared the number for the lovely Blood Cancer UK specialist nurses before but I’ll add it again here 0808 2080 888. They can call you back and I’m sure can offer personalised support.
Keep us posted please @JAlex20 and also keep up that great perseverance in self-care, it does get easier once we have more information, I promise!
