Propofol for bone marrow biopsy

Posted by kittycatgirl @kittycatgirl, Oct 11, 2023

Hi I have a probable diagnosis of PV. I will most likely need a bone marrow biopsy but will not consent unless I am asleep. Does the May Clinic offer Propofol at all their campuses? I will pay out of pocket and travel anywhere. I was considering visiting the clinic in Arizona. I do not want to be awake at all. Does anyone know where I can find a list of centers who use Propofol?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Every modern hospital uses propofol for procedures that could traumatize the patient, or leave the patience so averse to further interventions of that particular kind that it could hamper the medical establishment's ability to help the patient. Nobody wants you freaking out! So, discuss this with the surgeon or someone who has that person's ear regularly, and I'm sure you'll find yourself put at ease.

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@gloaming

Every modern hospital uses propofol for procedures that could traumatize the patient, or leave the patience so averse to further interventions of that particular kind that it could hamper the medical establishment's ability to help the patient. Nobody wants you freaking out! So, discuss this with the surgeon or someone who has that person's ear regularly, and I'm sure you'll find yourself put at ease.

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I have asked the Interventional Radiology department they stated the nurses aren’t trained to administer it. I have my first appointment next so will discuss my options. Since I would like to see a specialist I may ask for referral to Mayo Clinic.

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@kittycatgirl

I have asked the Interventional Radiology department they stated the nurses aren’t trained to administer it. I have my first appointment next so will discuss my options. Since I would like to see a specialist I may ask for referral to Mayo Clinic.

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Hi @kittycatgirl, From personal experience with bone marrow biopsies at Mayo, they do indeed use a mild sedative of propofol and fentanyl for this procedure. You’re out for about 10 minutes and wake up completely relaxed with no memory of what took place. It’s lovely. ☺️
Just make sure you mention you’d like to be under when scheduling the procedure so the anesthesiologist is lined up for the appointment.

If you’d like to be seen at Mayo Clinic, here is a link to their site where you can initiate a request for an appointment.
http://mayocl.in/1mtmR63
Just follow the prompts for a new patient and it will allow you to select Phoenix for your location.

I’ve had 13 biopsies done throughout my treatment with an aggressive form of leukemia. I definitely prefer being out. But when that wasn’t an option at my local hospital for one of them, I was given lorazapam to take ahead of time. The directions were to swallow a .5mg tablet 1 hour before the appt. Then at the half hour mark, take another.
I wasn’t ‘out’ but it did help keep me relaxed throughout the appointment. It might be an option if you need this biopsy in a timely manner and don’t have an appointment with Mayo yet.

Good luck with your biopsy and hopefully you’ll be able to find a local clinic who will be able to offer you a twilight sleep.
We have quite a few members who also have Polycythemia Vera in our Blood Cancer and Disorders group and we’re all here to support you if you have any questions or concerns.
Will you let us know what you find out?

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Thanks so much, Your answer was very reassuring. I assume you are asleep? I am too anxious for Versed. Is propofol available at all locations? I would hate to make an appointment in Phoenix only to find out you can only get it in Minnesota. Do I need to have an appointment with a doctor at Mayo first? I will be traveling from Colorado. I will be self pay, my dad has agreed to pay for whatever I need. If needed I will have my doc send a referral to Phoenix. Should I specify Propofol on the scheduling request? I am unsure of how urgent the biopsy will be, I will ask for phlebotomy in the meantime. Hoping it won’t take too long to schedule an appointment at Mayo though. You have have been so helful.Sorry for the barrage of questions.

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They asked me at Mayo if I wanted to be put under and I said YES! They used propofol and fentanyl and I was not awake for any of it and came out of it without the sleepiness and residual fog. This was at Rochester.

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@kittycatgirl

Thanks so much, Your answer was very reassuring. I assume you are asleep? I am too anxious for Versed. Is propofol available at all locations? I would hate to make an appointment in Phoenix only to find out you can only get it in Minnesota. Do I need to have an appointment with a doctor at Mayo first? I will be traveling from Colorado. I will be self pay, my dad has agreed to pay for whatever I need. If needed I will have my doc send a referral to Phoenix. Should I specify Propofol on the scheduling request? I am unsure of how urgent the biopsy will be, I will ask for phlebotomy in the meantime. Hoping it won’t take too long to schedule an appointment at Mayo though. You have have been so helful.Sorry for the barrage of questions.

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Hi @kittycatgirl I’m fairly certain that all Mayo Clinic’s would use the same procedures for BMB.
As for protocol for who can receive a BMB there, you may need to have been seen by a doctor first or at least be accepted for patient review. The first thing would be to follow that link I provided yesterday to initiate an appointment and go from there.

Just so you’re aware, even if you don’t have the sedative, you would get a local anesthetic with the biopsy. So sometimes just taking an anti anxiety med like the Ativan (lorazapam) like I mentioned and then having the local anesthetic injected at the site may be enough for you to remain comfortable.

You’ll know more after your next appointment with the hematologist. Maybe they won’t require one at this time. ☺️

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Have you had a bone marrow biopsy before? A big influence on the experience you have depends on your expectations. I have had a half dozen or so biopsies. It was not as bad as I would have thought. I had the bone marrow biopsies done at Johns Hopkins. They were done by a Nurse Practitioner who was very experienced doing the procedure. It took about 15 minutes. She did several per day every day.

They used lidocaine as a local anesthetic. That involves some discomfort, but it is bearable. They always offered me fentanyl. I think that they offered me an anti-anxiety drug like Ativan also. I have had the procedure both with fentanyl and without fentanyl. I recommend the fentanyl, or other similar drug(s). Once I knew what to expect, subsequent biopsies were easier. There is always some pain/discomfort, but only for a short time.

One time after I had the bone marrow biopsy with only lidocaine, after the procedure, when everything was done and I was sitting up ready to leave, a nurse asked me how I was doing. I said that I was okay, but that I would not want to make it a hobby. She seemed amused by that statement.

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I haven’t had a bmb before. I will not tolerate being awake, I am blind and sensitive to sound and other stimuli.

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I had either a biopsy or aspiration before propofol or fentanyl existed. I was told only told that red soap was being used and it was tolerable I would prefer to go the unsedated route again if the person doing it is as skilled as that doctor was. I would worry that sedation is used to mask incompetence.

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@kittycatgirl

Thanks so much, Your answer was very reassuring. I assume you are asleep? I am too anxious for Versed. Is propofol available at all locations? I would hate to make an appointment in Phoenix only to find out you can only get it in Minnesota. Do I need to have an appointment with a doctor at Mayo first? I will be traveling from Colorado. I will be self pay, my dad has agreed to pay for whatever I need. If needed I will have my doc send a referral to Phoenix. Should I specify Propofol on the scheduling request? I am unsure of how urgent the biopsy will be, I will ask for phlebotomy in the meantime. Hoping it won’t take too long to schedule an appointment at Mayo though. You have have been so helful.Sorry for the barrage of questions.

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Ask away, this is a great group to be a part of. Very supportive and you can ask as many questions as needed, there is always someone who can provide feedback or their experience and typically more than one.
I have PV myself, diagnosed this past April. My hematologist oncologist said I can wait a couple years for my biopsy, after 5 pints were removed over a period of about 7 weeks my numbers came down. Then I was able to go about 2 months until the next one.
I definitely noticed there are very large variations in PV experiences. I've struggled with a number of things, extreme fatigue, very achy hands, feet and other joints, headaches (my BP has been a bit uncontrolled) and bad shortness of breath.
I am incrementally starting to feel better.
You've got this and it takes a village, we're that village.

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