[hcp1Participant]

Hi

Does anyone else find having a bone marrow biopsy traumatic? Or am I just a coward?! I asked for a sedative this time but felt no sedative effects at all! The doctor carrying out the procedure said that some people felt nothing at all – I can hardly believe that as I find it so painful!! It’s less about bone pain but I seem to get nerve pain.

Anyway I won’t be due another til next year!

Charlie –  Hope you enjoyed your friends 40th birthday and that your preparations for harvest/transplant are going to plan.

Helen

 

 

[tobygoParticipant]

Hi Helen

Sorry to hear that the biopsy was traumatic. It is never nice having needles put into you, but as you say done for now!

I have only ever had the one biopsy and that seems a lifetime ago now but I guess there may be more with a transplant around the corner.

Hope all is good.

Toby

 

[suzettefoxParticipant]

Hi Helen

sorry to hear your experience with the biopsy. Never plesent .  I had my first one with no pain relief, apparently East Surrey have no pain relief available, my next two have been at the marsden where they give gas and air.  It does help, apparently the idea is to have about 17 deeps breaths before they start and continue throughout the procedure.  It does help, what pain relief were you given ?  Mind you I still dread them and I have one due in November  !!!!!

regards

suzette

[dinoParticipant]

Helen so sorry to hear about your biopsy. I had one at the start of Treatment and then at the end to correlate to the blood tests.

The first carried out by the consultant was not nice but bearable. The second was by the F1 overseen by the registrar. She did a good job ( I was her 5th ever) but did require 2 attempts to get the bone. Being a man who does not like pain I left their bed soak from sweat. They said the a/con in the room was rubbish. These procedures are never nice but I look at the Oncology ward and the treatment others are going through and am grateful I am not going through theirs.

Keep your chin up and I hope everything goes okay.

[dickbParticipant]

Hi Helen,

Just for your interest, I live in Germany, post SCT here they like to do a BMB 4 weeks after SCT. The first I had the doctor said it will be no worse than visiting the dentist to which I replied after you must have crap dentisits in Germany. The second, by another specialist was a lot better. But for the third post SCT, I discussed the system in the UK of a BMB at 100 days. Her answer was that they do it properly in the UK and then I asked if I really needed one. She said no because she gets all the data she needs from my blood results. So 20 months on from the SCT I have not had a BMB and it has never come up in conversation. When there’s been concern because I have never achieved remission, just classed as Stable, they have given me an MRT scan. Apparently this gives a better overview of MM and where it’s most active. Trouble is it’s mega-expensive.

So perhaps you should discuss that option with your consultant, A BMB only gives a local snap shot of what is happening whereas the MRT will give a better overall picture.

Hope everything else is going well,

Richard

[hcp1Participant]

Hi all

Thank you for your messages.

The more I read the more confused I become! I thought the blood results (showing number of lambda light chains in my case) were an indicator of the activity of the disease but the BMB provided a more accurate picture of the amount of cancer. I was told I had 55% abnormal plasma cells when diagnosed and they are hoping that my BMB last week should show it has reduced to below 10% as a result of the VTD induction treatment. It is then hoped that after the SCT it may reduce to 1 or 2%.

I’m not sure I will ever understand it all! I now have another list of questions to ask at my next consultant appointment!

best wishes to you all

Helen

 

[duskParticipant]

Hello Helen

When you are first diagnosed then the BMB serves a number of functions including taking a sample for cytogenetic testing as well as assessing the percentage of abnormal plasma cells in the bone marrow. It is a snapshot of the area where the sample was taken.

The myeloma is not always evenly distributed throughout the skeletal structure, an MRI/ PET scan can be used to show this picture better.

But after induction treatment before SCT they will want to know how much the abnormal plasma cells have reduced in the bone marrow. Light chain values from blood samples are good for regular monitoring during ongoing treatment to assess degree of disease control or determine if relapse is setting in, but do not give a picture of how much myeloma is still in the bone marrow- hence the BMB.

After SCT the BMB gives a picture of just how much of the cancer has been removed by this treatment. A stringent complete response will indicate negative disease status at bone marrow level, (although there is always some myeloma around it is at an undetectable level), as well as normal blood values for your light chains. There are guidelines written to inform our doctors just what degree of remission has occured from the information collected this way.

No need to be confused the BMB serves a purpose at particular times with blood levels of light chains measured for ongoing routine monitoring- no one wants regular BMB’s!

 

[hcp1Participant]

Dear Dusk

THANK YOU for your clear explanation. That all makes sense!

I am waiting for an appointment to come through to meet the doctor at the hospital where I will be having the transplant. I just want to get on with it now!

best wishes

Helen

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