I have bone biopsy tomorrow

[Androg]

My first initial hematogist thought I had PV, I sought a second opinion from more experienced cancer care hospital. i got a travelling hematologist who has seen more cases of different MPNs than one staying put, & I got very comfortable with both his knowledge base (thanks to all here who answered my first post & sent me links to articles & vids that I hadn't seen) as well as him welcoming any and all questions, concerns & my knowledge of the subject.

This one is saying ET, but ordered bone marrow biopsy for base line as we go down this road. I'm a bit anxious about tomorrow, reading up on what to expect, etc.

After April I'll have a new oncologist when this one moves to another hospital, but I think they can manage things after we see where I am. I don't have many symptoms, a few night sweats and tiredness, but I have Polymyalgia Rheumatica, so sometimes I get tired just because of underlying pain for last 7 years, so it's hard to know about that to be certain.

I do get more pain from vaccine shots and even developed two frozen shoulders after shots for pneumonia & shingles, so not only the marrow procedure, but pain lasting long term from it.....I know things are about to change after tomorrow, so we'll see.

I will update as I feel up to it. Luckily here we have snow & cold, so lying around watching tv or sleeping is easier 👍

[hunter5582]

Hope the BMB goes well. I expect it will hurt a bit, but will be worth it. There are anesthesia options at some locations. Hope they can at least give you some nitrous oxide in addition to the local.

Never heard of a traveling hematologist. Glad you found someone who knows more about MPNs. Finding a MPN-expert doc is one of the keys to optimal care. The nearest MPN expert is could find is about 2 hours away at the Johns Hopkins MPN Center. I see the MPN Specialist annually of more often as needed. The MPN Specialist advises me and my local hematologist (wonderful doc who is not a MPN expert) about my care. This arrangement works great.

Do let us know how things go. All the best to you.

[JaneWayne]

Had my BMB today, I would have expect it to be worse. Acutally I was terrified. It was slightly painful, but you should be fine. I squeezed my husbands hand througout the procedure. It hurts quiet a bit afterwards, so plan to rest for the rest of the day. All the best for tomorrow!

[Otterfield]

My last BMB was okay, just fleeting moments of a weird sort of pain. Make sure you get a local anaesthetic. Afterwards I felt some aching but painkillers helped a lot. Good luck.

[Janet123]

Please don't be afraid. It hurts a bit like a bee sting. Squeeze someone's hand. I had a wonderful nurse that let me do that. Its over pretty quickly. Blessings...Janet

[Mazcd Partner MPNVoice]

HI Androg, I hope all went well with the biopsy and that it wasn't too painful. Best wishes, Maz

[Androg in reply to Mazcd]

Hi Maz, I am lying awake at 4:18 am, here in the U.S., just not able to sleep, lolI don't check in until 10 am so awhile yet (bmb starts at noon). I'm sure I'm in good hands but I tend to experience more pain because of my ongoing Polymyalgia Rheumatica.... actually that's how I found the MPN Voice forum because I joined the one for PMR ,😊

But at least I will have a baseline of marrow info going forward & support from members, so I don't feel so alone in this, thanks!

[Mazcd Partner MPNVoice in reply to Androg]

Hi Androg, sorry I thought you had already had it done, I am sure you are in good hands, you could ask the doctor about suitable pain relief to take afterwards. Glad that you found us, we are all thinking of you and sending you hugs and good wishes. Take it easy when you get home and rest. Try and get some sleep now. Maz x

[Michael56]

Hi Androg hope the biopsy goes well for you, I had one back in November and wasn't as I expected but nothing I couldn't get over, fingers crossed for you xx

[Cja1956]

Hi, Androg, good luck with your BMB. I’ve had 2 of them, the first right in the doctor’s office in 2008, which only hurt for a few seconds. My second one was in 2019 in the hospital. That one did hurt a little more even though I was lightly sedated. I think maybe because I was older, age 63. or maybe the doctor was not as experienced. The first one diagnosed me with ET Jak 2 and the second with post Et MF. Either way, the fear and anticipation is worse than the procedure, so I’m sure everything will go well. Let us know.

Cindy

[Androg]

I had my BMB on Thursday & it seems Murphy was with me that day because things went a little wrong.Firstly there was an emergency bleed that came in so my doctor had to attend to that person, then do other scheduled procedures. I happened to have blood drawn for tests from my new Rheumatologist the day before, so they said they would use those results....BUT, because of the delay it turned out they needed fresh blood tests, less than 24 hours old, so I had to get stuck, where they blew out two veins (one for a blood draw & one for an iv for sedation).

My veins are small (I weigh 104 lbs US weight) & they tend to roll 😕

Lots of pain & long time with no water or food.

I went in close to 3 hours late & they gave me sedation that was supposed to put me in a twilight sleep, but it totally knocked me out & two hours in recovery & they couldn't wake me up. I finally slowly came around but felt weak & nauseous.

They wheeled me out, all slumped over on the wheelchair, to my ride....I got to my driveway & threw up 5 times.

Today is Sunday afternoon & I'm just now feeling like moving from my bed. I lost 3 lbs and have really felt beat up.

I'm so glad it's over but I'm going to start on Hydroxyurea for ET (JAK 2) but I needed to wait until I regained a bit more strength after this ordeal!

My MPN doc is in a another town, so it was arranged for me to have the BMB in my town to make it better. I don't blame the hospital because I tend to be a lightweight when it comes to any drug/procedure. I will make it more clear how badly I handle drugs. No wonder people sort of give up on having more & more "things" done when they have something like we all have!!

Anyway I'll be trying out the Hydroxyurea in 500mg for 3 days, then if all goes ok, go to 1000 mg a day & start getting blood draws for counts each week until I see my MPN doc in two weeks.

We'll see how I do. I read about Cleveland Clinic's clinical trial for ET but you first have to have failed another treatment.....but it is something I have my eye on as I go into this new diagnosis.

[Cja1956 in reply to Androg]

Oh, my! You did have a bad experience with it. I felt they didn’t give me enough sedation when I had my second one. The doctor that was supposed to do my BMB was called away and someone else did it. My whole body was achy for the next couple of days. I didn’t tell you this in my last post because I didn’t want to alarm you. I’m sure you’re glad it’s over. You probably will not need another one for a long time. I hope the medication helps.

We are all here for you.

[Androg in reply to Cja1956]

Thanks for telling me your experience, I suppose I should be glad I got too much rather than not enough sedation,lol. You're right, I'm happy it's behind me now and getting over it for the most part!

I'm so thankful for a group like this where real people can share their own experiences, give opinions and just be there when we need an empathetic ear 💖

[JaK2ET]

Sorry to hear that you had a bad time with the BMB. Best wishes for a speedy recovery!