Hello,
I did a Bone Marrow Biopsy (BMB ) yesterday and had a Martini after my blood work but before the procedure.
It was much easier ( pain wise) than the other 2 BMB's I had.
If you have too much you need to have someone drive you home...
Don't drink and Drive!!!
I get the results in a couple days.
I have been on Venetoclax plus Imbruvica for 14 months.
Hopefully I am MRD Negative in the Bone Marrow!!
I have been MRD negative in the blood since 9 months in.
Hoffy
Hoffy,
Not a martini fan, but maybe wine , if I get to that stage. How wonderful that you are MRD with blood. Hoping you are negative in marrow too. Let us know.
Wishing you well!
Susan
LOL.. Thats one way to relax. Hope your results show MRD Negative my friend. I have been on Venetoclax for two months now doing well. 😁👍
When they find that you are MRD negative, is it safe to say you'll be having a celebratory martini as well?? 
Yes, Sounds good.
I don't have Martini's that often but they are strong and go well with BMB's...
I thought that you were joking about the martini! I’m so glad that it worked 😊 Hoping that bone marrow biopsy comes back MRD negative! 🙏🙏🙏
I’m guessing you took your martini with you. Doubtful the coffee shop sold them! Haha. So glad for you!
Linda
Ok so never saw a post like this but kudos to positive thought and living your life. Not sure about the medical Stuff but can’t say enough that it made me laugh out loud. Thanks for sharing
I’d have to make that a chocolate martini. A regular martini is a little strong, but whatever works. You can’t lose your sense of humor with all we go through. Keep us updated. Best of luck. Sally
Wow! Didn't think about doing that. But so glad to hear you're doing well. Here's to great results. 🍸 Cindi
I've always kinda wondered what the doctors say about us on their breaks...
" oh hey, did you see Joe, yesterday? He completely shnapsed his way through that procedure...."
Lol la lol
I told her after. I think she likes that I did it because it made it a lot easier for her during the procedure. She cannot consent to it though .
She seem to say it was OK as long as you're not drunk when you signed the consent form and your ok to drive home after .
It was a vodka martini so I think it's hard to smell and I chewed gum too....
If drinking is good at parties It maybe Even better for procedures ...
Marrow and blood clear but one stubborn node remaining at 8 months same trial. First biopsy a lot less painful than imagined and pain didn't last long. Second done by a trainee, took twice as long, stacks more painful and the pain lasted 10 days, discomfort continued a few days longer. Best of luck for MRD- results, keep us posted wont you. And cheers!
Thanks.
Dr. Kipps ( my Doctor) says some nodes can have some scar tissue bumps in them that are not CLL. He said they have done a biopsy on some of them and there is no CLL. Hopefully that is the case with yours.
From what I can tell if your blood is MRD negative and your BMB is MRD negative it should not be in your nodes since the CLL cells eventually have to come out of the nodes and circulate in the blood and marrow to stay alive. Someone else may want to comment on this.
Are your nodes stable? I have one small scar tissue dot in a node under my arm.
Hoffy
thankyou very much for this. Graham's away atm but he will like to hear this. He hasn't seen Doc about this yet - results were just phoned through. what you are saying makes sense - given how large the ones in his neck appeared I was wondering if they maybe got "stretched" making them appear larger on the scan. We were really puzzled as to why a node would still be large when they started reducing visibly in first two weeks on ibrutinib! Woohoo! MRD negative sounds like he's there. Champagne for me beer for him and enjoy your martinis! We have been following your story as you are a bit ahead. Best of luck, I've "followed" this post and look forward to hearing your favourable results soon. Cheers
Same. One visible node. 6 months on ibrutinib. Not sure how to monitor the progress. Blood was never affected. SLL.
Thanks for sharing. So you never had cll in blood ever? Marrow?
Blood test was and is always normal. BM has small amount of CLL detected since FCR. The bulk of SLL was in spleen and LNs. Hard to monitor the response to ibrutinib because they do not scan often
Maybe they'll start providing a good stiff drink to all their patients after seeing how much easier it was for you. It will become standard procedure.
Love it!!! Hospital should supply drink of choice before a bmb! Praying for MRD negative for you x
A new addition to vending machines??
Rats, wrong button.
What an inspired way of dealing with the bone marrow procedure, and thanks for making me smile. Good luck with the results.
Bramleys
LOL. Glad it worked. Now how to get the insurance companies to recognize it as medically necessary. Adding my hope to others that you see MRD- in the results.
I love the martini idea! I’m hoping that you are MRD negative too, can’t wait to hear!
I had a xanax on the rocks to ease the anxiety! Didnt want them smelling alcohol on my breath. Afraid Id get a ticket...BUI...biopsy under influence!
Hi Hoffy - it's great to hear how well you are doing - BCTexas, too! Please keep us updated on how you are doing. Fingers and toes crossed for MRD negative in the bone marrow!
Here’s to you! Hope it comes out MRD negative. Then you can celebrate with a couple of martinis!
Wish MRD negative for you Hoffy! Let us know. I'm on the same meds but not nearly as long. I hope I get to that point as well!
Paula
Hi Hoffy, I am on idealisib and my blood counts are ok. please let me know the results from Bone marrow biopsy. Are you allowed to stop taken tablets?
good luck Emma
If I am MRD negative then I either take just the Imbruvica or a placebo .
I will keep everyone posted.
Be well,
Hoffy
Hello,
I am very pleased to announce that I got my results back and I am MRD NEGATIVE in the bone marrow!!!! Less than one in 10,000 cells
I am on the Imbruvica plus Venetoclax trial and on my 14th month of the captivate trial out of UC San Diego.
I am very excited with this result and I will post some more info later.
I am 85% of 17 P deleted and 55% trisomy 12 unmutated Zap 70 positive complex karyotyping - thus not very good.
Besides following the study protocol I am also vegan low sugar with a little bit of fish. I drink good quality green tea 2 to 4 cups a day. I drink orange juice with raw Tumeric juiced into it. I jump on a trampoline. I do exercise five days a week. I tried to get plenty of rest and keep my stress level down although I'm still working full-time. I'm not sure if a lot of these things help but it is worth a try for me given my bad cyto -genetics.
I do personally know someone who brought her white count down from 150,000 to 50,000 by going on a raw food low sugar vegan diet. Very hard though....
I will keep you posted.
Hoffa
Congrats. Great. How about lymph nodes? Do they check LN?
The nodes are down but you can you not fully tell without a biopsy- as far as I know.
Congrats. Don't know you but reading your results we are feeling your excitement. Grahams unmutated and 91% 17p, so we understand how important this trial was to you. Now we wait ... Time for another martini!
I’d missed your results when posted. Congratulations, on the MRD -ve all round. Maybe an extra Martini to celebrate🍸
best, rob
thanks!!
Love a dirty Martini. 👍🏼
2 olives dirty
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