Timing of bone marrow biopsy

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AVSW20
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Timing of bone marrow biopsy

Post by AVSW20 » 14 Oct 2020 15:33

Hello people. I'm new to the group and to the forum... and this is my first post.

I first saw a Haematologist in July 2017 when my Haemoglobin (Hgb) level was just over 100. Over the last few years the level has gently declined (with some small rises and falls along the way) and at the last blood test - in September 2020 - my Hgb level was 83.

After my last appointment, my Haematologist wrote that there is underlying myelodysplasia, although I've not yet had a bone marrow biopsy. He said that he doesn't want to send me for a biopsy yet, and I'm not pushing for one.

I would love to know however, from those on the forum, if you've had a bone marrow biopsy
1) What were your Hgb levels before you were sent for a biopsy?
2) What triggered you being sent for a biopsy?

Thanks in advance for your answers

AJ
FJPL30
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Re: Timing of bone marrow biopsy

Post by FJPL30 » 15 Oct 2020 12:19

Hi, I had a bone marrow biopsy done within two weeks of my haematologist appointment. My hgb level was 85 which is what triggered the biopsy request.
Frank Jones, 72 yo. Diagnosed 30th Sept MDS-EB-2.
AVSW20
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Re: Timing of bone marrow biopsy

Post by AVSW20 » 24 Oct 2020 10:25

Thanks very much for your answer Frank. Is anyone else out there who can add more answers?
SJST21
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Re: Timing of bone marrow biopsy

Post by SJST21 » 25 Oct 2020 07:05

Hi AJ,
My husband has MDS, diagnosed January 2020. He had a blood test in October 2019 and it showed very low white blood count, he had a couple of follow up blood tests, again showing very low white blood count. He had a bone marrow biopsy in November, had a phone call the evening before and was asked to have this. Heard nothing back and was told he would be contacted if there was a problem. Had a follow up appointment in January and was told he had MDS which we had to google! His red cells and platelets were normal and he had no other symptoms apart from what he says as not feeling quite right. I hope that helps.
AVSW20
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Re: Timing of bone marrow biopsy

Post by AVSW20 » 07 Nov 2020 18:05

Thanks SJST21 very much for your reply. Can anyone else add their experience on this topic?
AVME13
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Re: Timing of bone marrow biopsy

Post by AVME13 » 17 Nov 2020 10:04

Hello AJ,

In my case I was told that it was necessary to have a bone marrow biopsy before a diagnosis could be made. At that time, my local haematologist at Canterbury said he was 95% certain that I had Aplastic Anaemia, with the other 5% possibility being MDS.

The biopsy results confirmed that it was MDS. At the appointment at which the Consultant arranged a biopsy (1st October 2018) my haemoglobin was 97g/L, my neutrophils 0.8 and my platelets 158.

The biopsy took place on 9th October 2018, and my MDS diagnosis was confirmed from its results on 31st October 2018.

I have had two further bone marrow biopsies carried out since then, both at King's after I asked for a referral to the MDS Centre of Excellence there for an 'additional opinion', the second of these to enable increased testing of my samples to include a more in-depth look at chromosomes and genes.

Best wishes,

Andy.
AVSW20
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Re: Timing of bone marrow biopsy

Post by AVSW20 » 20 Nov 2020 12:42

Thanks for your reply Andy. I very much appreciate the info.
chris
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Re: Timing of bone marrow biopsy

Post by chris » 20 Nov 2020 13:19

Hi AJ

I had my first bone marrow biopsy over 12 years ago as part of a multi-disciplinary team approach to investigate some very serious symptoms (fluid on stomach area and both lungs, liver and spleen enlargement, whole body pain, and fatigue) which appeared from nowhere! Nothing conclusive was found. A year later, I was referred back to haematology as spleen had not gone back to normal size. This time, another bone marrow biopsy was performed and MDS was diagnosed. Same haematologist as a year previously. Whether MDS was there a year before (and was missed!) is something I've never been able to ascertain!

I'd say that if you want a definitive diagnosis one way or the other, and if MDS is suspected by your haematologist, the bone marrow biopsy is probably the only procedure which can conclusively clarify this. There are many, many causes of anaemia, however, and maybe your haematologist has good reason for not asking for a biopsy? Why not ask him the direct question at your next appointment? I have to say that, in my personal experience, a bone marrow biopsy is a very invasive, quite brutal and painful procedure - though some practitioners are better at it than others!! As a mother of 3, I'd probably say that I'd prefer going through childbirth! :) I have had 5 now I think (bone marrow biopsies - not children! :) ), last one must have been 6 or 7 years ago. I would not be in a hurry to have them on a regular basis, particularly as follow-up after initial diagnosis can now mainly be done through specific blood tests alone - even gene mutations can be picked up through a specific test on your blood sample called Next Generation Sequencing (NGS).

I wondered why you, yourself, were hesitant about it? That's not a criticism - many people want to really push for treatments and tests but we are all different and it's your prerogative to hold back if that's your preferred option. Are you having blood transfusions to help raise your haemoglobin levels? 83 seems a bit low - is that giving you symptoms of fatigue or breathlessness? Any other treatments in the past or currently?

Hope my meanderings help?!

Best wishes. Keep well and take care

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
AVSW20
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Re: Timing of bone marrow biopsy

Post by AVSW20 » 23 Nov 2020 20:32

Hi Chris

Thanks for your reply. You certainly had some wide-ranging symptoms. For me I'm just experiencing some palpitations, occasional breathlessness, and I can't seem to concentrate or stay focused for more than a couple of hours.

I will ask the Haematologist next time, why he's not wanting to send me for a biopsy, although from your comments, perhaps he's trying to spare me!

No blood transfusions to date for me, and no other treatments. In the past the Haematologist said he'd send me for a biopsy when the Haemoglobin dropped below 80, but at the last appointment he was more vague.

Thanks again for your reply. And to others, please do send your replies in...

AJ
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