Bone marrow sample.: Nov 2014, message from Consultant... - NRAS

NRAS
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Bone marrow sample.

Scorpius
Scorpius

Nov 2014, message from Consultant (haematology) discontinue monthly injections of "Simponi" suspicion that it is causing suppression of white/platelet blood cells (white cell recorded as 1.1). Jan 2015, no change in cell count, 6/1/15 an appointment was made for a sample of bone marrow to be taken. 13/1/15 sample taken (very painful procedure). 26th Jan

appointment with consultant, understand tests on marrow not conclusive, cell count still very low, a further bone marrow sample may be needed. My thoughts are when the sample was taken why did they not test for all possible infections. P.S. at least leukaemia has been eliminated.

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Hidden
Hidden

Poor you - I can see why you are frustrated at the thought of having to go through this again needlessly. I had a lumbar puncture that went awry and was extremely painful ten days ago and hope like mad that they don't need to retake it for any reason. Also I now probably need a skin biopsy which will be my third very expensive NHS flight away to dermatology dept in a year - last one in October was a waste of time and they could have done a skin biopsy to check my symptoms out then if the dermatologist hadn't been so dismissive and had actually listened to me.

We hear so much about the scarce resources but I really do wonder sometimes...

Still glad Leukaemia has been eliminated at least. Perhaps the first test was taken too soon to provide a good enough sample? Hope the issue resolves for you and you don't need to provide another bone marrow sample

Tx

Scorpius
Scorpius
in reply to Hidden

Thanks for your reply Twitchytoes, it sounds as though we are in a similar situation.

Regarding my position I have sent a complaint via "PALS" to the Hospital and await their reply, my next step is a second letter to my M.P. I have the impression that their are some consultants that consider themselves beyond reproach, but I would like some answers. I am aware that my actions could have repercussions but that is a risk I am prepared to take. Please keep us informed of your progress, and good luck.

Hello Scorpius:

Glad you found out its not Leukemia, and the test does not sound pleasant, but must be a relief to know. I'm hoping now that you are off Biologics, in time your white cell count will return to normal, however if your off Biologics they will eventually have to find another treatment for you.

Some of the drugs we take linger in your system for a very long time, and when you stop taking them your symptoms do not stop right away, I wonder if your docs plan to give you time to see if stopping the meds has an effect on the white cell count since they stopped your Simponi because it was suspected in the first place? I hope this gets sorted soon as I cant imagine the stress you are feeling on top of dealing with your RD.

I had a bone marrow biopsy at my local hospital just recently after white cell count kept dropping whilst on methotrexate and as you say it's quite an uncomfortable procedure. My results came back as inconclusive although they found nothing cancerous and they were sent away again for a second opinion but the answer was still the same. I was then referred to another more specialist hospital, Kings College London,

for these blood problems and had to have another biopsy as they like to run their own tests. I was then diagnosed with a disease called MDS for which I am now being treated. At this hospital I was also offered the option of having gas/air (ethonox ?) for the biopsy which although not an anaesthetic took your mind off the procedure being carried out behind you. Since being diagnosed I have started to realise how complicated the bloods can be and would only comment that it may be a little early to complain. Best wishes for your further treatment.

Scorpius
Scorpius
in reply to micknick99

I thank you for your comments, my thoughts were why weren't sufficient tests done to cover all possible eventualities. I have just received a message from the Hospital, in

answer to my question, their reply was "the sample was of poor quality" hence a further biopsy is required. In my opinion this is a cop out, a sample is a representative sample, why would further samples be any different. During the conversation with the Consultant when the possible need for a further biopsy was mentioned he stated that he personally would carry out the procedure, this statement speaks volumes in my opinion.

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