Hi All,
I have had two Bone Marrow Biopsies since getting diagnosed, I am absolutely petrified of them, the last one I had about 5 or 6 weeks ago was taken as the end of a RADAR trial which had failed me. My consultant knows how I feel about them but the last one \i asked for a sedative, well he gave me one tablet which did not do a lot. Anyhow on Saturday I received an appointment letter for an appointment with i think the specialist nurse who carries out the procedure and since getting it have been full of anxiety even though it did not mention the biopsy, the appointment is for today Monday 11th at 10am. There had been no discussion that it was happening last week when I met consultant and feel angry and alone.
My first BMB for confirmation of MM was brutal, was told it was to get some samples for the trial and to plan the treatment, I went to the room for the procedure, kept getting reassured that the only pain would be pressure, they discussed breathing techniques to help with the pain. the locals were bad enough but then she started the procedure, I was very tense, saturated in sweat and had another two nurses holding me still, when it came to getting the marrow i was warned about possible pain in my legs as they withdrew the sample. my legs were kicking all over the place with no control over what was happening. The nurse was struggling to get the sample without causing damage so in the last few minutes was offered gas and air, this helped a bit and let her get finished. My second BMB I demanded some sedation which I got one tablet which to be honest did not do a lot. They carried out the procedure again with no offer of gas and air just breathing and holding me down again.
It is my intention to turn down the appointment today if they refuse a suitable sedation, I know i am being such a coward but it is something I am really terrified off, I would like to hear of methods others have used to calm themselves down prior and during the procedure, as I type this my body is shaking and stomach tensed. Is it just me or does anyone else have these issues.
Thanks for reading.
Sorry to hear this Alamo and I think many folks on the group will understand.
I have lost count of the BMBs I have had over my 24 years (remember I have a different blood cancer)…… I have never had any sedation manly because at times I had to drive often do a 3-4hr drive home.
How these are done often depends on the person doing them….. more experienced medics who do these a lot have that ‘way’ of doing them.
You just need to highlight your concerns and tell them about your past experiences and I am sure they will look after you.
As you know BMBs are unfortunately an essential part of the monitoring process so needs to be done but done in the best way for you to feel comfortable and supported.
Early on I asked my team never to put out an appointment letter saying I was having a BMB…. I would arrive at clinic and the moment I was given 2 paracetamol I basically had about 30 mins to stress before it was done,
The mine thing I did during my BMBs was to chat with the other nurse to distract my brain from overthinking
Sending support ((hugs)!
Hi Stephen Alamo …… I hope you don’t mind the man ((hug)) I gave you in my last reply 
As amazing as my Inverness Clinical Teams and Glasgow Clinical Teams I have had my fair share of admin errors.……
One was when we were down visiting our daughter in Sutton Coldfield and was booked in for a clinic in Glasgow on the Monday (arranged the visits around the clinic days)
We drove to Glasgow on the Sunday and stayed overnight then after breakfast rocked up to the the clinic to be told there were no clinics today as it was the Glasgow Holiday (we have local bank holiday across Scotland not one big one) so just had to drive the 3+ hrs back home and come back down the following Sunday to stay over and have the clinic appointment on the Monday and drive back home.
Over my 2 SCTs I think we have done the round trip 30 times….. we di get mileage for the car and get the overnight stay pairs by our lical health board as it was them who sent me to Glasgow to get the treatment so it’s normal for folks from the Highlands to get some of the costs covered.
Hi Vespa all the best for your SCT ‘talk’ today….
The consultants ‘talk’ will make the SCT process sound bad….. but they have to highlight the extreme problems that ‘could’ come along…,.
I don’t know If I have said this before to you but I also volunteer for Lymphoma Action the UKs only dedicated Lymphoma charity and I run twice yearly SCT zoom support groups for folks with Lymphoma who are going into m, through or post SCT.
I always ask them a simple question “was the SCT process as bad as it was made out to be during the consultants ‘talk”?……. so far about 90% say the process was far simpler and minimal challenges than the ‘talk’ made out it would be…… 5% say that they had not been told what to expect so we’re more stressed than they should have been but found the process ok ……. the other 5%…. I am in this group did have problems but what price life?
Where do you stay Stephen?….. yes the team at Raigmore are great.
Opening the SCT door is unfortunately not an exact science….. it can take multiple attempts……. What is the plan now?
It’s over 8 years since I have had a BMB at Raigmore so not sure who does this now.
Hi Stephen, we are over in the Culloden area.
There indeed has been some significant advances in treatments and the likes of CAR-T for some types of blood cancers like Lymphoma is the go-to second line treatment now........ but the fall back is SCT...... and the investment in the SCT unit in Glasgow says that they expect to be doing Allo SCTs for a good period yet.
I have talked with a good number of folks in their 70s who have had Auto and indeed Allo SCT and years on they are doing great so as my wife and I have always said 'there is always hope until hope runs out'
My type of Lymphoma is rare and complicated and I could not be put into full remission so I went into both my Allo SCTs with active cancer......... we just let my brothers Stem Cells and my immune system fight it out..... reminded me of when we were little.
All the best with your discussions.
