delay after BMB

Please post here your experiences of MDS as a patient, carer, family or friend

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NW1958
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delay after BMB

Post by NW1958 » 25 Nov 2014 12:48

After my GP did a routine blood test in early October, which reveaved poor red cell count, poor white cell count and anaemia, within 10 days is was in Haematology at the RD&E hospital in Exeter. After brief mention of MDS I was then referred for a CT scan and a BMB. I duly had the BMB on 12th November and have now heard that my next appointment will not be until 15 December. The delay is agonising for me and my family - is this a usual period of delay??
Male, Aged 56, Still working, Recent diagnosis, Based nr Exeter
davidmiller

Re: delay after BMB

Post by davidmiller » 25 Nov 2014 22:23

Sorry to hear of your problems and of your worries. My clinic is very efficient and even they did not get BMB results for up to 14 days and then fix an appointment having received and evaluated those results. However may I suggest that you push for an appointment at an earlier date in anticipation of the BMB results on the basis of the above. Best wishes David Miller.
chris
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Re: delay after BMB

Post by chris » 25 Nov 2014 22:44

Hi there

I can recall how anxious and upset I was when awaiting the results of my first BMB so please accept my sympathy. There is a certain amount of necessary delay because of the laboratory process of examining the bone sample which gives the doctors very important information about your chromosomes and any abnormalities. These days there also seem to be delays due to the labs having so much work to do with fewer staff - cuts do have a noticeable effect!

Having said that, it may well be that your full results are available within 2-3 weeks so, as David suggested, it might be worth phoning and asking either for the information over the phone or for an earlier appointment. The latter would probably be better as the doctor can probably give you more detailed response about the meaning of your results in a face-to-face situation. There is little point in having this discussion until all the information is there. Until then, try to distract yourself - not easy I know - and do talk to Sophie about what sort of questions you might want to ask at your appointment. Also search my posts as I did make a suggested list (to Red I think?!) a couple of years ago!

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
NW1958
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Joined: 13 Nov 2014 11:30
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Re: delay after BMB

Post by NW1958 » 26 Nov 2014 09:03

Thank you for your messages, it is strange how you feel better just knowing that someone has read about your worries, and offered advice and support.

Thanks again
Nigel
Male, Aged 56, Still working, Recent diagnosis, Based nr Exeter
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: delay after BMB

Post by chris » 26 Nov 2014 20:37

Dear Nigel

For me, meeting other MDS patients really did help reduce some of the anxiety and panicky feelings I was experiencing shortly after my diagnosis. At this year's Patient Forum in London, we had a brilliant speaker called Anne Crookes who spoke about Coping with Anxiety. Reassuring to know that anxiety is a perfectly normal response to what we perceive as a threat and here is a link to the page. Scroll down and you can download her presentation.

http://www.mdspatientsupport.org.uk/eve ... ing-31014/

There are lots of services around to help people who are anxious about medical diagnoses - Macmillan have counsellors and some hospitals may well have counsellors available. Getting it right "in your head" is a bit of a journey but an important one and should not be neglected as your mind and body are all part of you and how you deal with difficult news.

Hang on in there - only a couple more weeks to go, less if the results are in and you can bring it forward.

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
JoannaM
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Re: delay after BMB

Post by JoannaM » 12 Feb 2016 18:15

Hi there.
I also live near Exeter. I was diagnosed 2 years ago with RAEB1 MDS. So far my treatment has been "Watch & Wait " with regular checkups in the Haematology Dept including bone marrow biopsies. I am now seen every 6 weeks, in Exeter & then at Kings College London. My neutrophils are down to 0.03 but Hb is not too bad at present.
I am hoping we can get a group together in Exeter because I feel it helps to talk to others with the same problems. The Haematology Dept at the moment run a monthly chat but it is for all types of blood disease.
Do ask next time you attend an appointment.
NW1958
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Joined: 13 Nov 2014 11:30
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Re: delay after BMB

Post by NW1958 » 19 Feb 2016 13:46

hello Joanna
Thank you for the suggestion about an Exeter Patient group. I did attend 1 general group but subsequent ones have clashed with hospital visits to Barnstaple (i have my Azacitidine treatment there because I work in Barnstaple) or Kings. It would be nice to have something specific for MDS as I feel the big issue is uncertainty (I am probably going to have a SCT in the following months and there is lots of uncertainty about that!) and anything that can keep us better informed can only be a good thing.

I will ask next time i speak to someone in Exeter.

I hope you are keeping well.

Nigel
Male, Aged 56, Still working, Recent diagnosis, Based nr Exeter
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