Do you know about Fludarabine and the lifelong need for irradiated blood?

[Cllcanada]

The profound lymphopenia caused by fludarabine, bendamustine, pentostatin cladrabine...renders patients susceptible to transfusion-associated graft versus host disease, a fatal complication of blood transfusion. For this reason, all patients who have ever received fludarabine should only be given irradiated blood components.

You should carry a card in your wallet stating this in case of an emergency... the hospital gave me one when I was treated with fludarabine...

You can get a Medic Alert also...

Don't expect a paramedic to know...they don't. Unirradiated blood and blood products could be fatal to fludarabine treated CLL patients.

[arthur123]

yes i know about this and i also carry a card

[Oleboyredw-uk]

I also have a card, however how often do people look in other people's wallets during accidents? I have a friend who is a paramedic and I asked her about this. I cannot remember the details however, as far as I can remember.....

I think she said ambulances in UK only carried irradiated blood but I think she said that has changed and now they carry something else to transfuse in emergency instead. Trying to remember what she said six months back is failing, I know it made me more at ease. I'll ask again.

I like the idea of the medic alert bracelet (?), more prominent than a card, any idea where to get them?

Rob

[roan]

Bracelet would be really good I have actually received an irradiated blood transfusion, took some time to get the blood, it had to be ordered, then set the alarm off when scanned as they had spelt my name wrong but GOOD security:-)))

[Cllcanada Top Poster CURE Hero]

I actually carry my CLL medical history around my neck on a small USB flash drive...

Not the nitty gritty...but Doctor contact names and numbers, my medical records access code, and my DNR info... family contacts etc.

It also has a CLL treatment history..etc etc

All files are in txt and pdf formats... took me about an hour to set up...

I have no privacy concerns with the information I have provided...

Others might consider this...

~chris

[bkoffman CLL CURE Hero]

I wear a bracelet that says CMV neg. irradiated blood only. Has my diagnosis and contact info.

[hammyj]

where do you get a medic alert from?

[Cllcanada Top Poster CURE Hero]

Here is the US link...there are chapters in many countries

medicalert.org/

[Oleboyredw-uk]

Anybody in UK joined Medic Alert? If so any comments on your experience so far? I just started reading the UK website and think I might join.

Rob

[Oleboyredw-uk]

The idea of wearing Id has raised itself in our household again, following a trip to the doctors and picking up a leaflet.

Does anybody use these?

Medicalert as mentioned by Chris: medicalert.org/

Leaflet from my doctor: identifyyourself.com/

(there might be others)

I keep coming back to wondering if one of these is a good idea, I cant see paramedics checking my wallet for cards, or do they?

rob

[manzelka]

Would this apply, for patients who had only had 2 rounds of FCR? Which my husband had and had to stop because of very adverse reaction to the FCR. Causing Tacot subo's cardiomyopathy which subsequently resolved and periferal neuropathy which has improved a lot over the past 2.5 years.

His haematologist then chose bendamustin and rituximab which only made him somewhat tired.

[Cllcanada Top Poster CURE Hero in reply to manzelka]

I would... in your husband's cases... some think bendamustine should have a similar warning.... better safe than sorry

[manzelka in reply to Cllcanada]

Thank you for replying Cllcanada.

My husband did have irradiated blood transfusions after the FCR but that was 2.5 years ago. He hasn't needed any since then.

But he has had a number of Ivig treatments since then to boost his immune system as these are a blood product should these have been irradiated?

[Cllcanada Top Poster CURE Hero in reply to manzelka]

IVIG is irradiated, in the manufacturing process.. no concern

[manzelka in reply to Cllcanada]

Thank you for taking the time to reply.

When my husband had the first dose of Ivig a year ago we asked if it had been irradiated and the staff said they didn't know, surely nursing staff should know this?

So thanks again for putting my mind at rest.

I really appreciate the help and support I get from everyone here.

[234me]

Thanks so much for the info. I did not know that.

No Dr nor cancer nurse ever suggested that and I will mention that next time I am in for my next treatment.

[Cllcanada Top Poster CURE Hero]

New advisement from BCCA...

Need for irradiated blood products: potentially life-threatening transfusion-related graft-versus-host- disease has been described in patients actively receiving fludarabine.

The Canadian Blood Service recommends that patients on fludarabine should receive irradiated blood products, effectively eliminating this risk.

bccancer.bc.ca/chemotherapy...

Previously on this group

healthunlocked.com/cllsuppo....

[Cllcanada Top Poster CURE Hero]

💉