My name is Conchita. I was diagnosed with ET and prescribed Hydroxycarbamide about 6 months ago. After 2 weeks of taking it and 2 venesections, the diagnosis was changed to VE.
I asked for a second opinions because I felt that I had not had a clear diagnosis and my symptoms were getting worse (the stinging itching under my skin sometimes goes on for hours).
I saw my specialist who is going to refer me to a MPN specialist in London.
Before that I have to have a bone marrow Biopsy and a bone marrow trephine.
I am very scared and worried. I am afraid of pain and of the unknown.
I would appreciate very much to be able to hear from other people who have gone or are going through the same experience.
Basically, I just want someone to hold my hand (virtually!).
Thank you in anticipation, Conchita
Hello@oleconchi I have just read your post and welcome ,I am new here so finding my way .I don’t have any experience of what you are describing and I’m sure you are unsettled by what’s been happening to you and what is to come .Bloodcancer Uk has a helpline with contact to one of their Nurses who will be able to help with your ? Also there is a lot of information on their Web site regarding being newly diagnosed etc.Im sure someone with similar experience will pick up soon for you and best of luck .
Hi @oleconchi. I had a bone marrow biopsy a few years ago now. Peoples experiences vary for different reasons. I think the thought of it was worse than mine actually was. It was pretty soon after my diagnosis and the reality of it all kicked in at that point which increased my anxiety. Some experience minimal discomfort and some more. So, with that in mind, I would air on the side of caution when reading about others experience as it may make you worry more than you need to. However, I do understand the need to ask because I did the same. I don’t think it’s ever going to be an easy procedure to get your head around and of course it’s uncomfortable.
Advice I would give; It really helped having my husband there as he kept talking to me and helped me to stay calm. Is anybody going with you? Deep breaths, try and focus on something else and let them know if you’re struggling. Some people prefer sedation and if I ever have to have one again then I probably would. Have you been offered sedation? When is the procedure taking place? I will put it in my diary and will be holding your hand - albeit virtually X
I was diagnosed 25 years ago and as part of that had a bone marrow biopsy. I was a little apprehensive, but the prospect was worse than the actuality. I was offered a local anaesthetic and felt the needle go into my hip bone and the marrow being withdrawn, but really nothing to worry about. If you are bothered by needles don’t let the doctor show it to you! Hope this helps, and the best of luck.
Definitely hear to virtually hold your hand!
As others have said, each person has their own experience. My husband has had a number of them - only local anaesthetic here and has not been troubled by them at all. In fact he always liked to say things that felt worse to him like stubbing a toe etc. All the very best to you
Others have replied to you far better than I can @oleconchi
The thoughts and feelings you are having sound so natural to me.
Yes, the Blood Cancer UK website and support line are there for you.
I would suggest that you tell your medical team how scared and worried you are and that you are afraid of pain and the unknown. Ask for all pain relief and sedation.
I am sure your medical team are so used to people feeling as you do.
Oh, we are all here to hold your hand virtually and sending you loving vibes.
Please let us know when you are having it and be kind to yourself, you are human.
I don’t find bone marrow biopsies very pleasant. People seem to have very different experiences on here. All I would say is ask for gas and air as it is available for the procedure but not always offered. It does help particularly if it is your first one and you don’t know how you will feel just to be on the safe side. They will give you local anaesthetic so the bit that’s uncomfortable is when the needle goes into the bone and draws out the marrow. Maybe I have been unlucky in the past as this should be momentary but has always been longer for me. Good luck and it has to be done so try not to worry. X
I had my 10th bone marrow biopsy this morning!
Basically for me it’s a 20 min procedure. I’m taken from the ward to a treatment room where there is my doctor and a nurse. I get into the foetal position so knees up on my side. The doctor injects local anesthetic into my lower back/ pelvis area. She then leaves it for a few mins to take effect.
After that there is a lot of tugging and pulling. I can feel it and its uncomfortable but it’s manageable.
They take the core blood and then a small sample of bone marrow.
When finished they put a dressing over it and I lie on my back for 30 mins. Then home time!
Area is a bit sore for a couple of days. Can’t shower that night.
Samples go to different labs and results back in 2 to 3 weeks.
So it’s not particularly nice to endure but it’s manageable and it is the only way our doctors can see what is really going on.
Wishing you the very best x
Thank you so much for replying to my anxious message about the forthcoming marrow bone biopsy. I have had a few replies and I just think aren’t people kind? so kind… they don’t know me and yet they write to me and explain and that in itself makes me feel better and less afraid.
Hi like all of us that’s had the procedure at times not very pleasant I usually go with the attitude that this is for my benefit and will help me out in the long run by the way I was diagnosed with Polycythaemia vera (PV) take care
I had mine done a while back, when this was the last stage of many diagnostics, as not much was known about how to diagnose ET at the time, or what caused it.
The biopsy and bone marrow trephine wasn’t very pleasant, but it was not too bad.
They then took a sample of the actual bone, to see if it was “holey” - that was a nightmare, they cut/break a bit off - I screamed, as they didn’t warn me about the acute pain,
the person in the next cubicle who was due to be done after me, refused their procedure and left. My husband, who was quite a way away, in a waiting room, came running in, thinking something major had gone wrong.
If you are having the last procedure, (ie actual bone sample) I would demand a general anaesthetic.
It took weeks to heal, because I have ET, so don’t heal well, and the hole left after taking a sample of bone, is bigger than just taking the marrow.
I wish someone had warned me what to expect.
Hi Conchita. Well done for posting ! I understand your apprehension totally ! Like some of the others who have replied to you above, I have had many many Bone Marrow Biopsies and Trephines over the last 4 years. For me they are not confortable, but certainly not really painfully, and certainly nothing to get worried about. The doctors that do the (short) procedure will have done hundreds before, they know what they are doing ! My understanding is that the Trephine and the Biopsy are done in the same short, simple procedure. @Ashob has described the process really well. I would add that often I have been offered a General Anaesthetic. I would definitely get someone to come along with you to hold your hand - it helps to chat and laugh through it all. You won’t feel any pain - you will just feel some pushing and pulling as the doctor gets to the right place. Good luck!
Hello my dear I had a bone marrow biopsy .I’m 73 and I can honestly tell you that I was fine .Of course you will be worried but the health team are marvelous put me at ease and I had slight pain for literally 2 secs good luck and please try not to worry
I was diagnosed with an MPN in late November 2021 but blood picture unclear re ET or Polycythaemia vera (PV) So had a Bone Marrow Biopsy done just before christmas to deterine type - still awaiting result. Due to covid restrictions I had to attend alone and like you I was really apprehensive but the Dr was really lovely and put me at ease prior to the procedure. No nurse just me and the dr in the room but she took her time with the local anaesthetic and I felt just a little push as the needle entered the bone then some pressure as she withdrew the marrow. Similar experience as she removed the second core sample . I can’t say It was painful just uncomfortable for a few seconds. Everyones experience is different but hopefully you will have a similar experience . Good luck
Hi @QA1982 a great big welcome to our forum and as you have done, sharing our experiences is one of the great ways we support each other on our forum.
I really look forward to hearing more about you.
Look after yourself
you’ve already had lots of replies and as many say the thought is worse than the actual. I have only had two but as people say they don’t last long. Whenever I’ve had to have a procedure that I was anxious about I have always asked if I could have someone hold my hand and staff have always obliged. I’ve had lots of procedures too including kidney biopsy, insertion of Hickman line, Nasogastric tube etc and a nurse or support worker or technician has held my hand which has been reassuring. So do ask.
This is a reply to all you kind people who replied to my letter asking for support and someone to hold my hand, just before I had my bone marrow biopsy . I cannot thank you enough .
I had gas and air and a lovely nurse holding my hand (I will never forget her kind eyes) . It was a bit like going to the dentist. You feel the sting of the needle when they put the local anaesthetic, but after that is just pushing but no sharp pains.
I am now waiting for the results.
I will keep in touch and let you know what happens.
I DID feel your hands holding mine!
Oh @oleconchi we were all there holding your hand with your lovely nurse, yes, do please let us know how you get on.
We and the Blood Cancer UK support line are there for you.
Hello @oleconchi. I’m so glad it’s over and done with and wasn’t as bad as perhaps you’d imagined. The waiting for results is always tough. Take care of yourself and keep us updated
Ah that’s great that it’s over now @oleconchi. Keep busy now while waiting for results!