Does anyone know if someone in remission from CLL (MRD- after FCR) would still need irradiated blood in the event of an emergency transfusion?
If so, whilst on holiday should he have a translated version of the warning card he carries with him?
Many thanks
Beryl
Hi Beryl
I believe that it is for life regardless of remission. I always carry my card with me. It would be worth getting it translated.
Is this for the big walk?
David
Just found a 5 year old post from CLL Canada on this subject (before we ever needed it)
healthunlocked.com/cllsuppo....
Now off to see if I can find a Spanish translation - anyone seen one please?
My CLL specialist said I will need to have irradiated blood products (should I need any future blood products) for rest of my life as a result of a single cycle of Fludarabine. He also said that irradiated blood was now the standard for all lymphoma patients. He was probably referring to the Cancer Agency standard in my province of Canada, since I don't think most doctors or hospitals are doing this.
Good question to raise with my specialist at next appt. Thank you for asking that.
Any treatment with a purine analog, like fludarabine, pentostatin, cladrabine or bendamustine, you need irradiated blood and blood products FOR LIFE.
Got an operation in your future, where blood or blood products may be needed, tell your surgeon...they SIMPLY DON'T know this in most cases.
While the chances of transfusion graft verses host diseases is small, it is also often fatal in immunocompromised CLL patients.
I carry card in my wallet, my man bag and all my devices have this information on tne lock screen... IRRADIATED BLOOD AND BLOOD PRODUCTS ONLY
NOT BEING DISPARAGING but most doctors are clueless about this...
~chris
Wow!!! What is irradiated blood and where do I get the card??
Chris; is irradiated blood used only if you've taken a purine analog drug? I haven't taken any meds yet, but will start on Ibrutinib in a couple of weeks. Carole
Yes, only for the purine analogues.
In the UK the blood banks don't leave it just to the medics - most have a special flag on the files of patients who need irradiated blood. It's considered a very serious error if the wrong component is issued for transfusion and has to be investigated and reported to SHOT - Serious Hazards of Transfusion. In 2015 there were 101 cases of patients not receiving the irradiated blood that they should have had due to a variety of causes.
I asked whether it would be an issue after so many IVIG infusions. I was told that it would be unusual here (the US) to get blood that wasn't irradiated. Since I seem to be the exception to so many things medical, I think I will make sure that I have a card if needed.
Most definitely you do! I wear a MedicAlert bracelet at all times which says I have CLL, am O Neg and can only have irradiated blood. I figure that if I was to be in a serious car accident I’d want the doctors to know this immediately.
Did not know they had cll bracelets
Medicalert do not have ‘cll bracelets’. On the front they have a symbol (serpent and dagger I think) and on the back a contact number, your unique Id number and a few words you pick.
If a medic rings the number and quotes your Id they get all the info you’ve supplied medicalert. For me they have name, dob, address, problems(CLL and hypertension), meds, warnings(bit about irradiated blood), hospital details, GP details, next of kin.
Thx so much!! This is in case we get hit by a bus and are unconscious and cannot talk right? I think I don’t need as here in Montreal if we have ID all the H have our case on the computer. ..
Yes, it is plus medicalert have foreign language support so I first signed up because of travelling abroad.
rob
Cell phones, even the old fashioned ones, have a place to enter emergency information also. On my flip phone it's called ICE (in case of emergency). Emergency responders know to look for it.
I’m not sure that is the case in UK. I’ll try to find out, unless anyone else knows one way or the other for sure?
In the UK most motorcycle groups promote the use of ICE. It's said the emergency services do to but I have no experience of that.
I do need to explore further, as a biker I’ve never heard of it. Must find ICE on my iPhone.
Good idea, and I think I will replace my dog's photo with this info as the screen saver and thus the first thing seen when phone is turned on. Never occurred to me to do this.
Interesting post! The alert for this on my medical file at the hospital has been removed, so I assumed I wouldn't need irradiated blood. I will check next consult. Thanks!
I have recently bought a medical bracelet (waterproof) so I can have the need for irradiated blood immediately found out by rescuers etc. should I be comatose! Mind you, I am fed up with putting it on already and I won't be so happy with it in the summer when wearing summer attire! But it is probably sensible to use one. I also have very low platelets currently so want people to know I could bleed a lot if involved in an accident! Cheery soul aren't I ....
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