Wednesday, November 18, 2015


Blood results

18.1 121.10 5.10 18.09 10.09 3.07 17.06 9.06 Normal
Hb 87 107 95 106 81 104   107 93 130-180
WBC 1.76 1.8 1.95 2.53 2.39 2.85  2.85 2.55 4.5-10.0
N'phils 0.46 0.57 0.87 1.05 1.02 1.16  1.17 1.14 2.0-7
Plt 221 202 225 2.41 2.41 249  232 296 150-450

October 21 Neutrophils were incorrectly recorded last time, corrected in this post, and they have now fallen below 0.5. Consultant decided I should take a holiday from Hydroxycarbamide for the next three weeks and then review the results again. He thought Hb might also recover a bit, an opinion I don't share. Its at about the level I had the last transfusion, and I will be surprised if I don't need one again after the next test.

I raised the problem of the ulcer on my left ankle, which has continued for 6 months, and the consultant is referring me to the specialist ulcer nurse.

PS Friday 15.00: on returning from the House just now, I found a message on my answerphone asking me to come in next Wednesday for a blood test and possible transfusion. Neutrophil count of less than 0.5 x 10^9/L is classified as severe neutropenia. I've cancelled the meeting I had on statelessness that morning, a second meeting to discuss the UK's policy on Eritrea, and an evening meeting I was scheduled to chair on Gypsies and Travellers.

PPS Letter from consultant to GP (in part):

I note a gradual drop in his white cell count despite the gradual reduction of his Hydroxycarbamide dose. His neutrophil count is 0.46 and he understands that he is neutropenic and he will require prompt medical attention if he should feel unwell or have fevers. We shall withhold Hydroxycarbamide from today.. He is okay with his current level of haemoglobin at 87 but if his symptoms of tiredness worsen he knows to contact us to organise a blood transfusion.

With regard to his chronic leg ulcer I shall write to the tissue viability nurse specialist to organise a clinic review......

We shall review him again in three weeks' time to see if his counts have picked up after stopping the Hydroxycarbamide completely. If there is no further improvement we shall consider doing a bone marrow aspirate/trephine biopsy. I will check his blood film today, to look for any circulating blasts and report back.

With regard to his chronic leg ulcer I shall write to the tissue viability nurse specialist to organise a clinic review......

Blood film showed macrocytosis [see}, aniso-poikilocytosis [see}, neutropenia and adequate platelets with no evidence of clumping. (amended: Left shifted neutrophils with occasional myelocyte and circulating blast seen.

The problem with this plan could be that my platelets will go through the roof, the reason why hydroxycarbamide was prescribed in the first place. So far that strategy had worked, juggling the dose after each consultation, but clearly the time has arrived when a Plan B is necessary.

The last sentence in red above does mean that there ian increase in the number of immature leukocytes in the peripheral blood, and the circulating blasts (immature cells) indicate  that the disease is getting to a new stage. The blasts release chemicals that cause the bone marrow to fill with scar tissue, further impairing its ability to produce healthy cells.

The median survival of all patients with myelofibrosis is slightly higher than 5 years, so I have been lucky to get to four and a half years without having to give up working. Anyway, watch this space.

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