Bone Marow biopsy

[Nc3500]

Hi everyone I’m new to posting but have been reading over the past few months I was recently diagnosed with ET and JAK 2 Gene mutation I have every symptom you can imagine night sweats headaches Burning and pain in my feet sometimes in my hands fatigue short of breath sometimes chest pains just turned 45 only on aspirin platelets have not went over 600 but have been having symptoms for a few years but just didn’t know what it was my hematologist was very inconsiderate told me that everything I was experiencing had nothing to do with it have an appointment with an MPN specialist on Tuesday to do a bone marrow biopsy and I’m scared to death can someone tell me how long it takes to heal from it and if there are any complications

[Jelbea]

Hello and welcome to the site. I have ET/PV jak2 positive diagnosed almost 18 months ago and take hydroxycarbamide. I told my haematologist team on at least 4 occasions about my symptom of extreme burning pain with redness and tingling in my feet, so bad it can keep me awake all night, They denied it had anything to do with my condition or treatment. I saw an MPN specialist last week and she was great. She confirmed what I thought and listened to my fears in a way the haematologist team did not.I have not had bone marrow biopsy but I was in hospital last year with two ladies who were having it done. They were fine. The following morning one had a slight headache. I see on this site people have it done as an out-patient. Others will come on here to reassure you. I send good wishes for Tuesday. Try to have a list of questions for your MPN specialist to set your mind at rest.

[Nc3500 in reply to Jelbea]

Thank you so much

[EPguy]

You can see on this site your symptoms are common in MPN. Of course other things can do it too, but my thought is look in the obvious places 1st, your MPN.

You can also see here, many Drs are fine with PLT at 600, and evidence points to reasonable PLT not being as important as other bloods such as HCT, WBC.

Best to reserve your Hem for routine blood care (blood draws, basic updates etc) and get your MPN care at the specialist.

I had a BMB. Some on this forum have better and worse experiences. Mine was toward the worse, but any bad part was brief. It can vary with Dr skill, my Dr I think was near the twilight of his career. Don't be hesitant to ask for generous Novocain during the process, it was helpful for me. If you have someone to drive you there is option for sedatives. I would do that if I had transport.

Once it was over, I had modest pain there but not bad and not long. I will be ready to do another if/when it's worth doing.

Did you get an allele burden (AB)? This is how much % of your Jak2 is mutated. This is worth knowing at the start of our journey.

[Nc3500 in reply to EPguy]

Not sure they took so many blood test but hematologist really never told me what any of them mean I know they did the smart genome test they did a bunch of tests the first time and I lost them and I had to redo everything again I basically googled what each one of the test meant no my oxygen in my blood is a little low white cells are a bit high and my primary physician took blood test and my B12 was at 2000 and I am not taking any type of supplements so that was A little weird but would rather have a specialist my symptoms are severe I really can’t explain the feelings and aspirin alone does not help i’m not the type of person that really takes medication but I’m very active and the way this has got me down having two good days yesterday and today but the week before I could not do a thing I’m so grateful for this website because honestly I have never heard of this and it’s very fearful knowing that you have something for life and there’s no cure but this helps so much to see that many of you are leading a normal life I have 16-year-old twin boys and a daughter anxious to be a grandmother and when I first heard I had this disease I thought this is it but I’m happy to see the people lead long happy lives thank you so much for replying

[hunter5582]

Hello and welcome to the forum. Glad you decided to post.

You have already realized that the symptoms you are describing are common with MPNs. The JAK2 mutation does more than cause the body to make too many platelets. It can cause a host of secondary/constitutional symptoms just like you are describing. Much os what you describe is microvascular symptoms. It has to do with how the blood cells interact with the vascular endothelium. The good news is that there are interventions that can help.

Some with Et find that they need to take aspirin two times a day to resolve symptoms. Aspirin is an effective antiplatelet medication, binding with platelets and preventing them from sticking. When this is not enough, there are other options. Controlling symptoms is just as important as reducing risk of thrombosis. your platelet levels are relatively low, so in the absence of incidents of thrombosis it is quite reasonable to focus on controlling other symptoms.

It is good news that you have connected with a MPN Specialist for the BMB. You will fid this doc to be much more aware of how MPNs manifest. Unfortunately, many hematologists are simply not experienced with MPNs. Optimal care requires input from a MPN Specialist.

Others can speak better regarding the BMB. Despite 30 years with a MPN, I have never had one. Others on the forum have spoken to a very rapid recovery and being back to full activities quickly.

All the best,

[summerdown in reply to hunter5582]

Hi. I have ET and JAK2 and take Hydroxy and 1 75mg aspirin a day plus additional hydroxy once A week. when my GP increased my aspirin my hemo stopped it immediately. Please do not take extra aspirin without checking with your consultant. Good luck with the bone marrow test

[hunter5582 in reply to summerdown]

You are 100% correct about checking with the MPN Specialist about the correct aspirin dose. Increased aspirin increases risk of hemorrhage and other adverse effects. Some MPN Specialists are now more routinely recommending aspirin 2x/day, particularly for patients who are not getting relief from symptoms. This is a decision to be made in collaboration with the care team based on the patient's treatment goals and risk tolerance.

[beetle in reply to hunter5582]

Hunter, I was surprised to read that you had never had a BMB. My experience with MPNs goes back 28 years and I never had a BMB until progression to MF from ET was suspected. I have seen discussions on forums where people get very heated about the need for BMB at diagnosis to make the diagnosis accurate and to assess for progression at a later date. I used to keep quiet about my lack of BMB as it was suggested strongly by many people that unless you had a BMB as per WHO recommendations that you could not realistically claim to even have an MPN. I have immense respect for your knowledge of MPNs and your ability and readiness to share that knowledge in a way that most of us can understand and I for one feel very fortunate that you are a member of our forum here. Thank you

To Nc3500 my Experience of BMB was middle of the road. The actual BMB was only slightly painful and over quickly but I found it painful to drive for a couple of days as the procedure was on my right side and moving my foot between brake and accelerator pushed my back into the seat. I have never seen anyone else mention this as a complication so maybe it is rare. Good luck with yours

[hunter5582 in reply to beetle]

In the course of 30 years with a MPN I have seen 3 regular hematologists and 3 MPN Specialists. They all have said that I do not need a BMB. My diagnosis is clear from the blood work alone. I did review this in detail when we saw the spike in thrombocytosis a couple of years ago. The decision was to do the advanced genetic testing and defer the BMB. If there is any sign of disease progression, then we will do the BMB.

There are references in the literature to the issue of whether a BMB is needed. It is not technically required per the WHO standards. There is a reason beyond diagnosis of PV to do a BMB. "However, bone marrow biopsy is the only way to detect initial myelofibrosis, which is present in up to 20% of patients and may predict a more rapid progression to overt myelofibrosis." emedicine.medscape.com/arti...

I would assume after 30 years of a MPN with both thrombocytosis and erythrocytosis that I have some level of fibrosis present. Doing a BMB would determine the the status of the fibrosis and give other information about bone marrow morphology. However, this information would not change anything. I would continue on the same treatment plan I am on now. I will do a BMB when it is determined that there is a reason to do so.

You are correct that there is some disagreement in the MPN world about whether a BMB is needed or not. Different experts have different opinions. The emerging view seems to be that there are times when the BMB is needed, but not everyone needs one. Some docs still do them for every patient. Other take it on a case-by-case basis. Perhaps there will be a greater consensus in the future.

[Jamesxyz in reply to hunter5582]

I also have never had a BNB. I have had several DRs tell me that a BMB would give us more information, but would not change the

treatment.

[hunter5582 in reply to Jamesxyz]

That is the essence of what my docs said too. It really comes down to a matter of treatment philosophy. Not a black and white issue. I am content with not doing a BMB until later since the information would not change anything in my case.

[EPguy in reply to hunter5582]

It could be one recent reason to get BMB is the possibility that IFN can improve marrow conditions. I suspect my Dr wants to dose more than required for CHR for better odds of marrow reversal. There is one report I've posted somewhere that suggest the extra dosing could help here. A BMB would be needed to observe any benefit and adjust dose. But marrow improvements take years so this is not an easy feedback method.

[beetle in reply to hunter5582]

I agree. My first haematologist who was very well respected and became involved in making recommendations after the Chernobyl catastrophe barely mentioned BMB. She said my blood under the microscope left her in absolutely no doubt as to my diagnosis. I have felt in the past that folk on other forums try to almost guilt people into insisting on BMB. My consultant now says that another BMB for me would give them little if any more information than they already know. The BMB doctor at our hospital is apparently so good at them that people come from miles around to have him do theirs. That is reassuring if I did need one for some reason but I’m certainly not volunteering for one!!!

Best wishes, Jan

[katiewalsh]

Hi My BMB was performed by someone still learning & under supervision. It hurt a lot but I think that’s why. And the pain was very short in duration. Some places will do it with “twilight” sedation, some will give you something for anxiety first. My hip was a little sore for 1-2 days and that was all. From reading this forum for years I think most people did not have a lot of pain. Good luck. Katie

[FAM_KT]

Hi and welcome to the forum!

Glad to hear you have been referred to a MPN specialist. I had a BMB in May of this year - I have previous experience of a Liver Biopsy which was very very painful for myself something which even the consultant and nurses found unusual and I felt very nervous about the BMB as I heard / know people who have had one and heard it was painful.

When I attended for mine I spoke with the consultant about my experience and he was very understanding on why I was very nervous about the procedure. From my experience I didn’t really get much pain - it was more pressure and and a strange tingling /shooting down the leg - I felt a little sore / uncomfortable for a few days after but nothing too bad.

Anyway I got a prognosis of primary MF at the age of 35 - not what I, nor the doctors expected as I am probably lucky in the respect I do not suffer too much with other symptoms like overs but I do have an enlarged spleen and portal vein thrombosis which is causing issues with 6/8 week procedures to manage that side of things.

I wish you luck with the BMB and hopefully it goes as smooth as mine did.

[Foodies]

Welcome to the forum. You will find lots of support here and meet people who understand. Just to reassure you about bob - I have had 4 at this stage as I originally had ITP diagnosed in 2004 with further complications after a splenectomy. The others were later years prior to being diagnosed with ET Cal R+. I was scared the first time but the others were less so, it does help to have some light sedation if you have a driver. I didn’t have too much pain afterwards. Try to relax and do deep breathing and it helps. Best of luck.

[MPN62]

Hello! I have ET and am Jak2 mutation also. I’ve had 3 bone marrow biopsies and would like to assure you that it seems worse than it might sound! My experiences have been great; very little effect on my physical self, back to work the next day. Certainly worth it ☺️

[lizzziep]

I had a bmb just over 3 weeks ago. It was done with local anaesthetic and I also had the gas and air. There was a bit of pain at the time, it hurt slightly for a couple of days then soon healed. Occasionally I can still feel it a little when I stretch in certain directions, otherwise ok. I have ET and the bmb was too check whether it was transforming to anything else. I haven’t had the results yet. Hope everything goes well for you. I have a lot more trouble with my arthritis than the ET.

[Caspar2021]

I had a little bit of discomfort after mine but nothing too bad.

[Smudger0122]

Morning Nc3500

I had a bone marrow biopsy earlier this year.

The fear and apprehension was actually worse then the procedure.

I had a local anesthetic in the back, once numb it felt no worse then having a procedure at the dentist.

All will be ok, there is usually a nurse as well whose hand you can hold.

All be fine

Mark

[azaelea]

Hi,and welcome! I had BMB on being diagnosed with ET JAK2+ in 2018. I just had a local anaesthetic and it was done by a Practice Nurse in Haematology as an outpatient. I just felt a momentary pain and tingly feeling down my leg which I only felt briefly. Otherwise I could just feel a slight ache in my right side for a couple of days. Don’t be scared, it’ll be fine.

[Cokopops]

Hi and welcome to the site. I understand your fears and worries. It’s all such a shock isn’t! And this ET being such a rare illness doesn’t help! I was diagnosed by phone on the first day of lockdown, so had phone appointments since. I did have a bone marrow biopsy and although it was a little unpleasant it was ok and went home an hour later. The bruising lasted a few days but not painful just a bit tender.As for your fatigue and the rest of symptoms it’s all part of this ET in my opinion. You will see on this site many have the same. My worse symptoms are fatigue and neuropathy caused by hydroxycarbamide. So I was given amitriptyline to help with the pains in my leg, it really eased the pain, and now I sometimes suffer from restless leg at night. It a question of trial and errors. Just take one day at a time, keep hydrated and keep posting your thoughts and experience here. It does help talking about it. Good luck young lady x

[Redsab7]

I was diagnosed 3 years ago with ET J2+ but BMB was only this week not at the beginning of my journey. I'm on aspirin and anagrelide. Platelets are done under 600 but I'm still experiencing itching, feet burning, bone pain so consultant decided to do the BMB to check where we are at. I had it done at outpatient clinic by a specialist nurse who was fantastic and reassuring. There was discomfort not pain with local anaesthetic. I was back at work the next day. Just awaiting results. Well worth it. All the best!

[Hocus58]

Hi, had a BMB in March this year just 3 weeks after being diagnosed with PV.

Like you I was concerned and apprehensive but would say the thought is worse than my experience although the nurse did say everyone is different.

I had a local anaesthetic in the area and can say I did feel a bit of pain at aspiration but this was only for a few seconds. The whole procedure lasted about 30 minutes from local to getting tea and biscuits. I drove home after.

No major issues after, localised pain which went in couple days with no need for pain relief.

In my case the thought was definitely worse than the actual procedure. Good Luck x

[DJK12]

What an unpleasant and unhelpful haematology consultation as most of us will recognise your symptoms as classic MPN ones. Hopefully your new consultant will be discuss this more fully with you.

Re BMBs over 38 years, since I was first diagnosed with first ET and then post ET MF, I have had five BMBs. I would describe them as uncomfortable with odd sensations down your leg. At the more recent ones the doctors have talked with an aim to distract plus a nurse was there to hold a hand. Another post suggested relaxation and deep breathing which is an excellent idea.

Except for the 4th where I had sedation (extra was being taken for various research reasons) I either drove or took a bus to and from them. After the first I remember being bruised and uncomfortable for a couple of days and driving was a bit tricky the next day but after the others perhaps just for a day but it didn't interfere with my daily life. As others have said the anticipation of the unknown is worse than the event but I've had more difficult times at the dentist. I'm not being flippant but plan a treat for yourself for when it's done and you're home.

Good luck Diana

[Bears23]

I’ve had two bmb. Both went well. The procedure takes 5-10 minutes. I had both in the office, drove home after and very little pain. During procedure there is a little pressure and it’s over quickly. Very little pain following, went to work next day without any issues.

[Wyebird]

So glad you are seeing an MPN heamo. I had symptoms with platelets in 550+ thought I was anaemic. Nothing like you are experiencing. You might find find meds will lower your symptoms Good luck x

[gvibes]

Like some others, I was nervous about it but for me the procedure was quick with not bad and short lived pain akin to a dental procedure. I believe the lab reports of the bone marrow for MPN patients are pretty diagnostic for the disease. I also got very different results for allele burden for bone marrow aspirate vs blood. Not that I know much, but as the disease is based in bone marrow it seems important to get a baseline for one’s conditions. I found it surprising that with a jak2 exon 12 mutation, my bone marrow is quite different than jak2 617f. Not sure the research has gone very deep on this. I guess at this point nothing has come out of this but it seems good to know where it is now going forward. Another piece of data in the puzzle. Good luck.

[GarciaB]

I was diagnosed with polysythemia Vera six years ago. I started with phlebotomist, but they didn’t lower my red blood cell or platelets enough. I was already taking baby aspirin and they added hydroxyurea. Last year I developed a blood clot that migrated to my lungs. I had the second biopsy during that hospitalization. Try team was very cognizant of numbing the area and the bone. I only felt some minor pressure and minimum discomfort. The worry was worse than the procedure. They also offered mild sedation with Versed. Just a calming sedative. I’ve since had five additional biopsies leading up to a bone marrow transplant. The thought and worry have always been worse than the biopsy. Fear not!!👍🏼

[Cja1956]

I’ve had 3 BMBs, so far. The first one was in 2008 at age 52. I had it in the doctor’s office. I was very nervous so I brought my sister along for moral support. The procedure only lasted a couple of minutes and I was able drive myself home and I was fine. I was diagnosed with Et jak 2 positive. My second one was in 2019 when I suspected I had progressed to MF. I found a mpn specialist and she suggested I do it in the hospital. Even though I was lightly sedated, it was a little rougher than the first one. I was achy for a couple of days, especially at the spot of the BMB. My suspicions were verified that I had progressed to MF. My 3rd one was in 2021. I requested it to see if I was a candidate for a SCT. I asked for a little extra sedation, so it wasn’t so bad.

I guess to sum it up, the thought of having one is worse than the actual procedure, but I feel it helps give a more complete picture. I wish you all the best.

[Rem31]

This was my BMB experience:I drove there and back and although I took the day off I could probably have gone to work afterwards. The local anaesthetic was effective. I felt bruised in my lower back for a few days after but nothing bad. For me the worst part was the thought of it beforehand and I was glad once done.. bit like dreading a dentist appointment.

[Piperpeeps]

Hi!I’m so sorry to hear you are experiencing so many symptoms. My 16 year old daughter was diagnosed with ET/ Jak2 + last year and had a bone marrow biopsy. Overall, she was in minor discomfort for a couple of days and just rested a lot. She too is experiencing a few symptoms including, very frequent headaches, bone and joint pain (specifically neck and back) and fatigue. Her plate hover in the 800’s. Everything else is within normal range, with excellent of Von Willdebrand factor rising. However, have gone as high as 1.2, during illness. She is on 81mg of aspirin daily, which seems to help a bit. I hope you have the same mild recovery after your biopsy. Good luck! Please keep us updated.

[Jansmithk]

Hi I have had 2 BMB 1st was a terrible experience no pain relief 2nd felt nothing the Dr gave me gas and air before he started and I just used that throughout the procedure after it aches fir a couple of days that's about it but as for your symptoms I have the same plus bone pain on legs and muscle pain

[Threelions]

Hi,Sorry I’m a bit late to reply. I can confidently say that having a BMB is absolutely fine. From my experience it was a quick procedure. The area is well anesthetised so you don’t feel any pain. It’s more an unusual feeling than a painful one. Felt fine after & 24 hrs or so after I’d forgot I’d had it.

I did make out I was an invalid for a few more days to get out of housework though 😀

You’ll be absolutely fine, I’m sure👍

Let us know how it goes & you too can then reassure others that will post their concerns-just as I did (and was re assured by fellow MPNers) before I had a BMB👍

[Solyesh]

Welcome to the forum - you will find great information and support and most importantly great people here. You are already taking two great steps: 1) finding this forum and 2) seeing an MPN specialist. I was diagnosed with ET Jak2+ back in Dec 2020 (although I suspect I had the condition for at least 6 years prior as my first elevated platelet reading was back in 2014). My MPN specialist suggested a BMB to both confirm the diagnosis (as opposed to potentially being pre-MF or MF) and to establish a baseline for the future in case of progression (or remission). I too was quite hesitant about getting it done - but glad I went ahead. The procedure was done in hospital by my MPN specialist and with only local anaesthesia at extraction site. The procedure took longer than I had thought it would as it seemed to be difficult for the doctor to get a good sample - of course I immediately thought it must be due to fibrosis but he reassured me - nope just very strong bones. I was probably sore for about a week and a half afterwards but managed with OTC pain meds. While t was not the most fn procedure I have ever had - it was not as bad as I had thought and if I need another some day will do so without hesitation.

Best of Luck

[BloodZero]

My platelets used to average 1300 when i was im late 30s symptoms started to get progressively worse. Started hydroxy a few years back and symptoms improved. Im now 48 platelets av 400. Have a physically demanding job.I try to eat well and exercise. If i dont the pains, fatigue and melancholy is much greater.

So to answer your question, if you are doing all the right things, each month you should see improvement. (This was in my experience and not a universal rule).

[Brendaf]

Hi I’ve had two and both were good a little uncomfortable but nothing at all to worry about. Both were done at outpatients and didn’t take long at all I felt fine afterwards too. Good luck

[Tropicaldays]

See the MPN specialist and do not be concerned with the BMB, very easy. Getting the right answers takes while so take a step at a time. A second opinion is always helpful.

[Stripecat]

Hi Nc3500I was like you absolutely terrified to have the BMB- kept trying to delay it to no avail.

However they gave me what they called the green whistle to suck on during the process and it worked like a charm

Ask you haematologist for it