Full speed ahead!: Hi all My P53 came back... - CLL Support

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Full speed ahead!

sallyplest profile image
15 Replies

Hi all

My P53 came back negative, good news. I've had an ECG and a lung functionality test and bone marrow sample to be taken on Monday and this is what I dread. I made myself watch the procedure on YouTube through my fingers some of the time! I am a first class wimp but am terrified! Tuesday appointment with consultant who will tell me result of randomisation, so it's all happening. Throughout I have had help and support from my lovely nurse Yvonne who tells me next week is her last one, she is going on maternity leave. I wish her well obviously, she will make a lovely mum, but how dare she when I need her the most!!!! 😀😀. I have days when I can push CLL to the back of my mind and almost forget and other days like this week when I can't stop crying and hate those three little letters with a vengeance! I would be grateful for any BM test advice. I wondered if I should take painkillers before I go?

Best wishes to all

Sally

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15 Replies
newyork8 profile image
newyork8

Of course you are concerned about the bm test...so was I. Its not bad at all. They will anesthetise the area well. If they offer or you can request a mild sedative why not? I didnt have one and didnt need it but I see no harm in reducing anxiety. Youll be a champ.

sallyplest profile image
sallyplest in reply to newyork8

Thank you newyork8, I have requested a sedative, I'll take anything and everything! You have reassured me thank you again.

ap64 profile image
ap64

Good luck.

sallyplest profile image
sallyplest in reply to ap64

Thank you

The anxiety leading up to the BM was much worse than the procedure. My oncologist anesthetised the area and she talked me through it. I had no problem at all. Good luck. Sally (USA)

sallyplest profile image
sallyplest in reply to CLLCalifornia-USA

That's good to hear thank you

holly2 profile image
holly2

Hello Sallyplest, I felt like you did when I was told I had to have a BMB. Even tried to wriggle out of it till my consultant explained the reason for it. She told me to take some painkillers an hour before my test was due and I took cocodamol. Obviously, if you are requesting a sedative then rely on that and don't take painkillers as well.

While I have only had the one BMB, it was not as awful as the anticipation of it was! I found it more uncomfortable and not nice not being able to see what was going on behind my back! I asked for her to let me know exactly what she was doing so I had no surprises. Afterwards there was no feeling from it at all. I would not worry about having another one now.

So all the best with yours and I hope you get good results from it as I did.

All the best, Holly.

sallyplest profile image
sallyplest in reply to holly2

Thank you for your reassurance I'm sure it will be ok

Peggy4 profile image
Peggy4

You're naturally nervous, as I would be. I can understand you being sorry to lose your nurse, it makes a big difference if we know an trust someone doesn't it.?

Ah yes, those three little letters which used to mean nothing to most of us at all until the day we learned of our diagnosis. However, so much that can be done for us now, even in the last few years there have been major breakthroughs and many more to com.

Peggy

sallyplest profile image
sallyplest in reply to Peggy4

The whole nursing staff are lovely so I'm sure I'll be well looked after. As I've said before it's the fear of not knowing what's to come that's the worst but I will be fine I'm sure.

Eric70 profile image
Eric70

The worry about it is far worse than the procedure. I've had two now and never a problem. Believe me it is not as bad as it sounds, but it does get you a lot of street cred!!!

E-Lynn profile image
E-Lynn

I've had five now, all at the NIH in Bethesda MD. They have a technician there who is the go-to person for the whole Clinical Center so she has done thousands. I would rather have her BMB than have a teeth cleaning. The key is lots of numbing with lidocaine injections then making sure it has taken effect. No pain .. just a weird feeling.. and it is over. Definitely the anxiety before the first one is the hardest.

sallyplest profile image
sallyplest in reply to E-Lynn

Five!! I have a feeling I will need more than 1 and the keys seems to be in the sedation so I will put my best wimp face on and hope that I get a lot of it!

Jillinill profile image
Jillinill

I have had only 1 BMB so far without sedation, but won't be worried at all next time. Before the first one last year, I was terrified as I also have fibromyalgia muscle pain, and I couldn't fathom being in more pain. My doctor refused to allow sedation, so I called the outpatient center at the hospital, and spoke to a kind nurse who assured me that all of their doctors are done with the BMB in a minute or 2 and most patients had no pain at all. Only 1 out of thousands had to later reschedule time in a hospital suite for sedation. My doctor said he had done 1000's of them, and level of experience is really the key.

For dental work, I usually needed a double dose of novacaine, so my doctor gave me extra dose of lidocaine right next to the hip bone. Tgen he had to wait till it took effect which took maybe 10 minutes. He told me every step what to expect and to breathe deeply at the "worst part" where I only barely felt some slight movement. The most pain was grade 1/10 for the initial local lidocaine, like dental novacaine injections or typical blood draws, which never bothered me on most occasions.

In my experience, I only made one mistake. After reading 100's of BMB reviews, many suggesting sedation, pain relievers, or anti anxiety meds such as Xanax, my doctor said I could take a Xanax (alprazolam) 30 min before the BMB to calm my nerves. I had a script, but had never taken any before. After the BMB I had to lay there and wait 15 minutes, during which time my speech became slurred and I started laughing hysterically. When I got up from the table, even though i was holding onto my friend, the room spun, my legs collapsed like noodles, and I fell onto the floor hitting my BMB hip bone. I was so loopy there was no initial pain. I don't know exactly whether it was the fall or the procedure itself, but I had a bruise and grade 1-2 occasional bone pain for a month after the BMB. From what I've heard, it's uncommon to have pain for more than a few days, so it was probably the fall. I won't be taking Xanax again! The doctor was right. My worry was really all for nothing!

Jill

sallyplest profile image
sallyplest in reply to Jillinill

Thanks Jill, I hope I have the same experience as you, without of course the fall afterwards!! Thank you for making me laugh, I promise it wasn't at you it was at the situation.

Best wishes

Sally

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