I have my bmb scheduled for two days from now. My anxiety is "through the roof". I believe my hematologist originally thought I have ET. I am Calr 1 positive. However, her notes after the last visit state that the results of my bloodwork/tests are "consistent with an MPN, either ET or pre-pmf. Overt pmf unlikely". My last blood counts did show slightly elevated white blood count and a slightly elevated ldh.
The possible diagnosis of pre-pmf is so frightening. There is so little published about it. So few people have it. I feel overwhelmed. I am a 71-year-old widow with no family in the immeidate area. I am blessed to live in a community with wonderful people and I have many friends. But just the thought of needing more care in the next few years, possibly arranging a move to a retirement community selling a home etc. just has me terribly upset. I just feel so alone.
I know I am getting ahead of myself, but I needed to "vent" somewhere and I see that may have been where I am right now. Encouragement would be most welcome. Thank you all.
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Mtnlife
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hi I can understand your anxiety. I was so worried it does not take long just keep still and chat as much as you can makes it go quicker had dressing put on after I felt a bit stiff but no pain If you can feel anything just be upfront and say. You will be fine. You don’t need to undress I wore leggings and they were pulled down a bit so nothing embarrassing. Good luck let us know how you get on I think my anxiety was worse than the procedure xx
It’s hard not to “borrow trouble” when a procedure is looming. One thing I do is put a time limit on my worrisome thinking - 5” maybe. Then I make myself think about what I look forward to doing - travel, visiting family/friends, hiking in a place I’ve never been, etc. But do the positive thinking for at least double the time. 10”. Hope it helps you because we are not our diagnoses. 💪😊
Hi mtnlife you vent all you won’t we will all listen it’s understandable you are worried thankfully you have good people around you and the hospital will look after you also and there are good medications now that slow things down try if you can to take one step at a time do something nice and I hope your BMB goes well take care best wishes Poppy
Dear mtnlife I too live in the mts, am 77 and got diagnosed with ET a year ago. So I’ve had some time to calm down. This site really helped. But it took me about six months to sleep again. the BMB wasn’t bad but my attitude was one of sheer terror. Here’s this disease attacking me out of the blue!! I’m fortunate to have a wonderful partner and I would enlist one of your many friends to be your advocate and accompany you to your appointments. I was such a mess I couldn’t even hear the doctor. All I remember was telling him I had to live as long as my beloved dog and he looked at me like I was nuts. And I interpreted that to be a death sentence
So here we are a year later. I’m doing fine so far. 6 Hydroxyurea a week, just had a total hip replacement and walking four miles a day, sometimes spiral into why me but try to move back into the moment. Just went through the floods in Santa Cruz county and realized I wasn’t even anxious as I must have used up my anxiety chips with the disease. You’ll get through this but I think it’s important to have a Buddy-advocate. Wishing you the best. Marti
My impression is that you are worried about pre-MF most of all. Please be assured that MF does not turn you into a person who needs "care." It can come with a dollop of fatigue but that is manageable, especially with your network of friends who could help with any heavy jobs you need to do. I can see no reason why you should need to move to retirement accommodation. I had MF, and have now had a stem cell transplant. I was and am fine, going for daily walks etc. I am married but I never needed looking after.
Please be assured that people can live well and long with MF.
Hi, I am CALR+, just had my BMB a few days ago and am also awaiting diagnosis with some signs it may be PMF. I completely feel you that the waiting game is really difficult. Keep us posted!
Don't worry. I had mine done, and the actual procedure wasn't so bad. I did have discomfort for quite awhile afterward, but nothing you can't tolerate. Best of luck, and take a Xanax!
Thinking of you . I was incredibly anxious and get my BMB results this afternoon. I have been living in a safe little bubble of ignorance since it happened and just enjoying my life. Take the time to relax and prepare. You will feel stronger to deal with whatever the diagnosis is and then you will take it one day at a time. Make sure you plan the best life going forward, rather than be governed by fear, medications and pain. Wishing you all the very best
I went for a second BMB yesterday, the first one went wrong . Ask for an experienced nurse to do the procedure, mine was ok yesterday a bit of discomfort but they give you gas and air . I am waiting for my diagnosis and go back on the 10 feb they told me I have MPN but need to establish which one . Good luck with your procedure
Hi. A huge hug for you. The BMB will be over before you know it. Keep chatting 🙂 they know you will be nervous. My brother always says to me " a problem isn't a problem till its a problem" thats helped me so much . Try not to overthink ( hard I know) .
Hi from Ireland. The thought of it is more terrifying than the reality. Plan a treat for yourself and think about that. I’ve had 4 BMB at this stage , not pleasant but try to relax. 17 Hydrea a week and leading a fairly active life. Pilates and walking. Good wishes and a hug.
I’ve just had a bmb, previous ones have been fine but this one they caught some nerves and I’ve had quite a bit of pain since, it is lessening though.
I had a call from haematology yesterday to say I was pre mf. I’ve been on Anagrelide which can make fibrosis worse so I presume they’ll change my medication. I’m going to get as much information as I can to take to the appointment in a couple of weeks. I haven’t seen a doctor face to face for over 3 years.
I will be 70 in a few weeks and also worry about my future independence, although I have a lovely husband he is a similar age. Our family don’t live close by.
It is natural to be worried, but being diagnosed does not mean you can't live an active life.I discovered I had an mpn through a routine blood test when I was 57. Had a BMB, which wasn't as bad as I imagined. Was diagnosed with Primary MF Calr. Was on hydroxycarbamide up till this year, and have just changed to Ruxolitinib. I am now 65 so have been living with it for 8 years. My main symptom is fatigue but that is manageable. I have lived a pretty normal life, with adjustments to cope with the fatigue.
So, please don't worry too much, with a good specialist and support from your friends you will cope with this! Stay positive.
I like that comment from a previous posterabout a problem not being a problem until it is a problem! I had first BMP yesterday having been diagnosed with mpn a month ago aged 60. My first panicked reaction telling my husband (who is living with heart failure) about the diagnosis was that I may still outlive him, but the dog could outlive us both. The hospital consultant's later advice was to keep living as normal and leave the job of keeping me alive to her - I must say it seems like excellent advice and I'm more than happy to follow it. There is no knowing how this disease will go for us as individuals so nothing to be achieved by trying to second guess it. We just have to rock on - but that's life isn't it? If you can access a counselling service even for a few sessions it might help to talk face to face with someone about your very reasonable fears. The BMP is ok, by the way - I've had worse visits to the dentist. Best wishes.
Worrying about what “what might be” is one of the most difficult parts of living with our MPNs. Once you have the full information of your current situation, and a treatment plan is set up then, at the very least, you take back a certain amount of control-which can help.
I had a series of sessions with the MacMillan cancer charity about how to cope with MPN associated anxiety and it helped massively. Im not sure if there is similar there but I would certainly recommend (once you have the full facts) that you look into seeking some counselling to help you deal with any ongoing anxieties you might feel.
In the meantime you are in my prayers & sending you huge positive thoughts and nice wishes.
My experience of the bmb was very good, I was put at ease all the way through, offered my choice of music and the team were very chatty and talked me through each step.Being concerned about results is normal. I hope every thing goes well for you.
Mtnlife, first Love your name here. I too adore the Mountains. I had BMB in July. Request conscious sedation. I did not and managed. I think the after portion would have not been bad but I could not relax so I had muscle strain on top of sore spot. If you enjoy music, or book on tape, take that and listen to it for distraction. Best to have a driver so you can relax after. I used a small pillow to keep pressure off the area. If you truly don’t feel you can go through without “being put to sleep”, call and tell them and reschedule. No crime in taking care of ourselves. I will opt for the conscious sedation next time. And breathe in the beauty around you. I have ET with Jak2, but maybe PreMF. My LDH was higher and went lower, now up again. My MF scoring is 1-2. My Specialist at Moffitt said could be PreMF but he will treat me the same. I just started Besremi. The score of mild to moderate score bothers me. I have been trying to read so much to figure it out. Education is good, but having a Specialist you trust helped to put my mind at rest. Do you have someone who could sit with you for procedure? I too worry about tomorrow and tasks. Today I know I can manage today, I try and plan for tomorrow but manage today. My initial shock was very painful and I had so much anxiety. I wish we actually had a group that could meet. A hug and sharing a cup of coffee or tea goes such a long way. I am sending you a hug and a smile. I know you got this. Be strong and call on a friend to stand with you. Please let me know after how it went. Christy
hello, I think you may feel somewhat relieved once you have the results & a proper diagnosis. I have PMF. ( diagnosed 7yrs ago) with Calc mutation - the Professor in my Myeloid team reassured me this was the most favourable mutation & that I could live for many years. This seems to be the case, I’m now approaching 72 & bloods very stable ( raised platelets since diagnosis); apart from the usual fatigue & itching I feel pretty well. I live alone & manage fine. All the best to you (you can ask for a sedative prior to BMB). Susie
Your anxiety is completely understandable. I’ve had 3 BMBS, the first one in 2008 at age 52, which showed ET, and the second one showed MFin 2019. In 2021, I had my 3rd to see if I was a candidate for a SCT. I was the most anxious when I had that one because I was afraid to find out if I had progressed even more. I was a complete wreck. Just know that pre/MF is not the same as MF. You could have many good years ahead of you. Stay as active as you can and focus on the positive. We are all here to support you.
Please don't worry about preMF. I've had it for nearly 9 years and it is treated exactly the same as ET. I am now 90 yrs old and still on my own, looking after myself, except having someone to do the cleaning occasionally. Apart from that, I am still doing my own shopping etc. Sometimes it's an effort because of all the aches and pains and fatigue, but I intend to keep going as long as I can. Hope all goes well with the BMB; it will soon be over!
As you can see, you're in good company here. I'm 75 with pv for 3 years. Currently on hu and still active and enjoying the saltmarsh where I live. You'll figure out a way to live with whatever they find - for the most part it's an inconvenience. Keep positive and post your questions. This is a wonderful community. Best to you. Saltmarsh
Hi Mtnlife. The fear of the unknown was worse than the mild discomfort of my first BMB two days ago. I requested for a stress ball to squeeze throughout the procedure but the hematologist was chatty enough to distract me from my spiraling thoughts. As Cat1001954 mentioned, be upfront if you feel anything so they can give you more local anesthetic. The only sensation I felt after I was anesthetized was pressure. I’ll learn about my results in late-Feb when I have my usual follow up visit with my hematologist, who often reminds me that my ET condition is chronic and can be managed for a long time. I’ve noticed that on days when I am active and engaged with friends, my ET thoughts and symptoms are minimal or nonexistent. Hoping your social support can provide you with the same comforts. Wishing you well.
I am overwhelmed by the outpouring of support here. Thank you all very much. I will tell you that I am much calmer than when I posted yesterday. I will update you when I have more news.
So glad you are feeling calmer today. The lovely support here really does help doesn't it. I love the idea of letting the worrying thoughts in for a short time then replacing with positive for a longer time .
Hi, I had a BMB last summer. I have ET, from CalR, but had a lot of symptoms so my Dr sent me for the biopsy. I have since been diagnosed with pre fibrotic MF from ET. I am only 51, & also have no family here, except my son who just turned 21 yoa. I found the diagnosis scary and overwhelming, but with time and prayer, and talking to my doctor, I have become reconciled to it. I’ve just started taking Hydroxyurea, as my platelets were over a million and I had a persistent headache. It’s really helping, my headache is mostly gone and I have no real side effects from the drug. My experience is that I am mainly tired all the time, but keeping somewhat active really helps with that, along with sleep… 😁 My doctor keeps reassuring me that Cal R is the gentle gene and the progression is much slower than with the other mutations. I will pray for peace for you, regardless of the outcome. I agree with others that have commented, you shouldn’t need ‘care’ anytime soon, so please try not to fret too much. Take care.
Hopefully sharing here and the support will help but if it isn’t enough make an appointment with your GP or equivalent specifically to discuss your anxieties over this and , if need be, get specialist advice from say a psychologist.
Often the worry over something is far worse than the thing itself. Talking it all through with the right professional, if need be, can only help. Don’t suffer alone.
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To BMB or not? And can I request one? 
Sarcomatoid SCCs and ruxolitinib BMB
First BMB tomorrow :) *update now done*
