No longer in remission.: Hi all I am posting... - Leukaemia CARE

Leukaemia CARE

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No longer in remission.

snoopy101 profile image

Hi all

I am posting as my AML is no longer in remission. I have been on various transfusions since end of July and currently taking daily Eltrombopag (Revolade) amongst other medication, which is helping to keeps my bloods stronger, delaying the inevitable demise. Onwards and upwards - keep fighting.

6 Replies
HAIRBEAR_UK profile image
HAIRBEAR_UKAdministrator

Hi snoopy101, sorry to learn this, thanks for sharing. I see from earlier posts that you have had platelet issues for some time, fingers cross the Revolade helps to get levels up for you. Reading back you mentioned you are overseas in Spain how do you find your care team are you getting all the information you need?

BW

Nick

Yes, my wife and I live amongst the olive groves of Jaen province in deepest Andalucia. We do not have a care team as such. My medical routine is a weekly full blood test, followed next day by a consultation - (my wife goes to the consults, as I am banned. In case of catching an infection - only go for any transfusions - if necessary). I am now on a course of Thioguanine and Eltrombopag, which has helped my bloods (haemaglobin, neutrophils, platelets) to get close to normality. The time distance between consults is now lengthening to one consult every 3 to weeks. My haematologist and head of haematology is extremely pleased how I am responding to treatment. I have no faults with care I have received over the last 4 years. I now have Spanish blood running through my veins - maybe the trick.

Basil01 profile image
Basil01 in reply to snoopy101

I'm sad to hear your news. I hope the current treatment plan serves you well. Lol about the Spanish blood:)You and your wife appear to have a good routine. I can only imagine an olive grove but it sounds like an amazing place to be.

Thank you for sharing. You are both in my thoughts. X

2003UK profile image
2003UKChampion

Oh Snoopy I am so sorry to hear that you are no longer in remission, it must have been a great shock and a a very worrying time for you.We are here as a support for you and the Leukaemia Care support line on 08088 014 444 is only a phone call away.

I find asking all my fears, thoughts and questions of my medical team really helps me a bit and just taking each day as it comes.

Thank you so much for posting, I know it is not easy to sometimes and look after yourself.

MeNotDavid profile image
MeNotDavid in reply to 2003UK

So sorry to hear this news. You're in my thoughts

I'm also very sorry to hear this and am thinking about you and your wife; but you sound as if you are in relatively good spirits, all things considered, which is just amazing.

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