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lymphoma cells in bone marrow biopsy

3 replies

purplerain44 · 18/05/2020 22:39

I am just after some advice from any knowledgable people. My husband had a bone marrow biopsy last year due to neutropenia and anaemia. It came back clear, and bloods went back to (the low side) of normal. The CT scan also showed up as clear (he had had some pains in his stomach which is why they did it).

However, in the last 2 months, he has bee suffering from profound anaemia, neutropenia and low platelets and having blood transfusions weekly. Finally, another bone marrow biopsy last week (delayed due to coronovirus), and we're very anxiously waiting for the results.

However, we got a letter today from the consultant's secretary that clearly wasn't meant for us- it said that actually, last year's biopsy wasn't clear and there were features of B lymphoma cells. We subsequently spoke to the consultant who said that it must have been a grey area, with no diagnosis, which is why no-one told us. Is this normal?? i am angry with myself for not following this up last year and angry with them for not telling us something that feels important to know. We could have gone for further tests etc. Instead, he has been getting infections all this year and finally, leading to the extremely low blood counts since March. the consultant has said it is likely to be a malignancy in the bone marrow and we are trying to be positive as I know treatments are good these days and he is young (50) and fit. But it feels like we've wasted time by not following up the initial biopsy. Thanks for reading this, I am at peak anxiety and have no idea what to think.

OP posts:
DennisTMenace · 18/05/2020 23:09

So difficult to say as there are different kinds and stages of lymphoma and treatment is always on individual cases. They don't always treat stage 1 straight away as it doesn't necessarily increase life expectancy. I am not an expert, although close to someone in remission, just didn't want to read and run. It is hard at the best of times let alone throwing I diagnosis during a pandemic.

purplerain44 · 18/05/2020 23:20

Thank you for your reply. It is literally like living in a nightmare! my DD is waiting for an ASD assessment too, so there's a lot of anxiety going on round here. I am reading about lymphoma being treatable, so I'm hanging onto that, but obviously, we don't know yet if it is, or which one it is.

OP posts:
MyNameIsArthur · 06/09/2020 08:55

Hi Purplerain

Sorry to hear what you and your family are going through right now.

If you go to Macmillan website there is an online community where you can discuss your concerns with others:-

community.macmillan.org.uk/?_ga=2.2267248.1519653901.1599378438-399708570.1484335400

Also there is a Facebook group for those who have had stem cell transplant including many with lymphoma or have had lymphoma. It's a very supportive group. It is called

Bone Marrow & Stem Cell Transplant Patient Support

Please let me know how things are now

I wish you all the best Flowers

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