Hello, all, as some of you know. I’m having a BMB tomorrow. It’s my second one in 2 years and my third one since 2008. I’m post Et Mf and for some reason for the first time I’m completely rattled about my upcoming test. I am the one who proposed it to my doctor because the last few months I’ve had bouts of nausea, loss of appetite, and weight loss. But my anxiety levels are through the roof and yesterday I couldn’t stop crying, just thinking about the outcome. I’m guessing there could be 3 scenarios: worst case, AML, second, an upgrade to intermediate 2, or best case, no change and maybe even improvement in my fibrosis. My numbers have been stable but still abnormal this past year. I’m still anemic and my platelets stubbornly hover around the 700’s.
Anyway, I almost didn’t post this but you all are the best support system. I feel I have to put on a “happy” face for everyone else. The only ones who really know how I feel are my partner and my son.
Take care,
Cindy
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Cja1956
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Hello my friend. I hope you get good news from the BMB. good on you for advocating for yourself to get answers. I would add a forth potential outcome - that there is no progression, but you are having adverse effects from your treatment.
As a fifth potential - note that anxiety can cause nausea , loss of appetite and weight loss. Inflammation in the GI tract can also cause anxiety via neurological and biochemical signals (Vagus nerve, cytokines, cortisol, catecholamines). I learned about this the hard way - personal experience. I got locked into this cycle and became very ill from it - both GI issues and extreme anxiety. I was able to break out of this cycle and will never let myself get trapped in it again.
Hoping that your BMB yields favorable answer top your questions. You will be in thoughts and prayers. Please let us know how things go.
Thanks so much, Hunter. It’s because of you that I have become more proactive in my treatment. I’m extremely grateful to you for imparting all your knowledge and support on this site. It has been a great comfort. I know others feel the same way.
Hi cja1956 it’s understandable you are nerves and worried and I hope the outcome will be good news whatever happens you have made the move to take control of your health and that can only be a good thing I hope you get some sleep tonight and tomorrow goes well for you .Best wishes Poppy
Hi Cindy, of course it’s scary. Facing the unknown it’s normal. But it sounds like you’re a pro at taking BMB & the results will let you & your docs tailor your treatment based on the results. And that’s a good thing. I believe knowledge is power even if the initial idea of it is frightening. Plz know we’ve “got your back” as they say in the US. Best. Katie
Hi Cja1956,Sorry I have only just read your post about your BMB so you may have already had it, if so I hope it went well and you're feeling better today, if not sending best wishes for the forthcoming procedure. Your anxiety is understandable so I hope you have a supportive nurse to talk to as well as your family. It can be a lonely place when we feel nobody understands. Like you I only discuss my condition with my husband and my daughter, I have life long friends whom I no longer feel particularly close to and that's a bit sad. So please keep us updated on here because we all care. Best wishes.
Thanks, JZ, I’m at the hospital now waiting. I understand what you mean about life long friends. They are still there, but as you said. many don’t understand what I’m going through. Luckily, I do have my family and they are very supportive.
I have only just received your post but pray all went well for you with your BMB. I too suffer with bouts of anxiety and that does the strangest thing to our bodies often compounding everything else we are dealing with. Please update us how you get on and prayers for a good and favourable result for you.
Good luck with the procedure hun. I still don’t understand why some people gat a BMB and others don’t. I have never had one, and from what I have heard about them I don’t want one (bit of a wuss when it comes to pain), so to hear this is your 3rd one shocked me. It would be interesting to do a survey on here to see how many people have, and have not had one to see what the percentages are like. Hope everything goes well. Take care xx
Thanks, Jill. My hematologist told me the only way to tell if your fibrosis has gotten worse is through a biopsy. Also, I also want to see if there are any more gene mutations. A biopsy gives a much bigger picture than just bloodwork.Anyway, right now I’m sitting in the waiting room of the hospital. Thanks for you support.
If you ever need a BMB, do be assured that it's not painful for everyone. My last one was just briefly uncomfortable and over quite quickly. I am a complete wuss but even I was fine with it!
Hi Cindy, I completely understand and identify with your anxiety. But once you know the results you will be in a much better position to move on if there needs to be a change in treatment. I think all of us with MF fear AML, but a doctor told me that it would be indicated in blood results before symptoms appeared and then the BMB would be to confirm it.I won't say try not to worry, because I certainly would, but I will be thinking of you as you await the results.
Good Luck Cindy , , hope it goes well and things aren't as bad as you fear. If there's an upside you will get an up to date picture of where you're at to inform the way forward which was what I always wanted but appreciate some folk may not want to know.
Not the best way to spend an hour but make sure you treat yourself afterwards with a coffee and a wedge of cake or some retail therapy if you're up to it.
Very best wishes to you, Cindy, as you look for answers. Anxiety does the strangest things to our bodies. I just had an endoscopy which showed significant gastritis and esophagitis. I was given meds and a bit of advice, “stop stressing out.” Easier said than done as my middle aged daughter is in severe mental crisis.
I too would be in a mental state. You have a lot at stake. By now I home the ordeal is over and done with.We need to be told we are brave at times. So I am telling you now, you are brave!
Hi, I hope your BMB went well. I hope that you get good news. I am like you in that I have a need to know. I will be asking for another BMB before too long as I have recently transitioned from ET to PV. Again, best wishes for a painless procedure and continued health going forward.
Thanks so much. The procedure went pretty well today. All the nurses were really nice and put me at ease. They said I should get the results within 3-5 days.
Hi Cindy, I so feel for you, it is such a tough thing to live with constantly, and anxiety is truly horrid and I so hope that it’s not worsened while you wait, but know that once you receive your results at least something will be off your plate and I hope with all my heart it is good news….it’s not impossible! so try and not worry these next few days.And remember we are all always here for you. Big hug.
That’s the way, hopefully it’s working, and I’m hoping that you have energy to distract yourself with things. Not long now, looking forward to you sharing your results. 🤞🤞🤞
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