Had Fludarabine? You can only have irradiated blood...for life.

[Cllcanada]

This is a repost...for some reason the messages isn't getting through...

It simply amazes me how many fludarabine treated CLL patients are not aware of this fact... it also apples to Cladrabine and pentostatin all purine analogs in fact. Also a good idea for bendamustine and campath...

'Patients treated with purine analogue drugs (fludarabine, cladribine and deoxycoformicin) should receive irradiated blood components indefinitely (1B). The situation with other purine antagonists and new and related agents, such as bendamustine and clofarabine, is unclear, but use of irradiated blood components is recommended as these agents have a similar mode of action. Irradiated blood components should be used after alemtuzumab (anti-CD52) therapy. Their use after rituximab (anti-CD20) is not recommended at this time. As new potent immunosupressive drugs and biological agents are introduced into practice there is a need for regular review of these recommendations (2C).'

hospital.blood.co.uk/librar...

bcshguidelines.com/document...

[MsLockYourPosts Passed Volunteer]

I think this is something that needs to be posted and reposted everywhere. Only a couple of the people I know who have had FCR have heard this from their medical team. Sad!

[Oleboyredw-uk]

I was given a card like the image in the first post at the start of my treatment. Now seven months on it is a bit tatty.

Been dragging my heals but plan to join Medicalert.

I agree this is a really important item there are enough risks or us 'out there' without being at from someone trying to help.

Rob

[scottyjean]

My husband has had CLL since 2003 and following treatment had a card given to him but we were told by a specialist at Kings College last year that all blood given is now irradiated. This could be the reason why patients have not been told of the 'risk'.

He is aged 72 and is currently on a trial for rituximab and GS1101. We do not know whether he is receiving the drug or a placebo but since starting the trial in December 2012 his white blood count has dropped from 260 to 8 and his other counts are all going in the right direction. His spleen has also reduced in size dramatically. We await next week when he will have a CT scan to see how the lymph glands in the stomach area have reacted. He reacted initially to the infusion of rituximab but now it is given slowly and he does not seem to have any other side effects.

[HAIRBEAR_UK Founder Admin]

Hi scottyjean

Great news to read your husband has had such a response on the rituximab and GS 1101 trial. Fingers crossed for him that his other glands have responded so well. Keep us posted. Is this UK treatment?

Thanks for passing on your thoughts about irradiated blood and why the message isn't clear. I looked up the NHS document: hospital.blood.co.uk/librar...

the NHS guidance information; Information for patients needing irradiated blood (Effective date: 31/07/11) it confirms white cell transfusions are routinely irradiated

BUT NOT RED CELL AND PLATELET TRANSFUSIONS.

excerpt:

"Is all blood routinely irradiated?

No. Red cell and platelet transfusions are not routinely irradiated and need

to be irradiated ‘on demand’ for patients at risk of TA-GvHD.

It is important that you remind your medical team of your need

for irradiated blood as they have to order it specially.

All granulocyte (white cell) and tissue type matched transfusions are

routinely irradiated. Fresh frozen plasma and plasma products, e.g. anti-D,

albumin and immunoglobulin do not contain lymphocytes or cause

TA-GvHD and therefore do not need to be irradiated."

[Cllcanada Top Poster CURE Hero]

This varies widely from country to country...

CLL patients need to ASK and REQUEST ONLY IRRADIATED BLOOD... be proactive PLEASE!

Nobody cares more about your life than you do...

[jangreen]

Hi I didn't know about this at all and will ask at my next consultation for a card. Thanks for the info.

[Frintonite]

This I did not know :-(((( will speak to my consultant at my next review

Ray

[Cllcanada Top Poster CURE Hero]

The message still isn't getting through.. please mention this to both your GP and your hemetologist...

If you are having surgery.. be certain your surgeon is aware..don't assume!

~chris