As I previously posted, hubby is due a stoma reversal on the 25th July. We had a phone call yesterday from the CLL Clinical Nurse stating that colorectal team have requested that he has a blood transfusion before the op. He is having this on the 18th July, they expect him to have at least 4 units. First unit will take 3 hrs as he has never had a transfusion before.
Hopefully this will make him feel better and he has a huge benefit. Just wonder if Dr Schuh agreed to this. Will be interesting that's for sure.
Take care
Susiecarer
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Susiecarer
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This is an important situation that does need your CLL Dr. to involved. I encourage you to call to put your mind at ease that all are on the same page.
I agree, it is important to have all your specialists in communication. When I had my hemicolectomy, my surgeon consulted with my CLL specialist, my cardio/oncologist and my geriatric 🙁internal medicine specialist.
I did ask, and she said request came from colorectal team. I also told the Clinical Nurse that he must have RADIATED BLOOD, she said she thought it was only people who had had one form of treatment or another. I asked her to check this out with Dr Schuh as I had read on the BLOODWISE leaflet that people with CLL who may in time need a blood transfusion should only receive Radiated blood and to see what she has to say, as I don't want him having blood if it isn't right.
I will however be DOUBLE/THRICE checking when he goes on the 18th.
I can't speak to Bloodwise, but the NHS guidance is for patients who have been treated with purine analogs, such as fludarabine, bendamustine, pentostatin or cladribine.
When my husband had his spleen removed Dr Schuh was kept informed by the gastrointestinal team. The CLL nurse advised us at every point and making sure everything was correct and in place.
My husband also needed blood and platelets before surgery and platelets during.
He did not have irradiated blood as it is my understanding (from the care team in the Day Treatment Unit) that only those CLL patients that have received purine analogs need irradiated blood.
Yes having read more into this blood transfusion business, I read on Google last night that radiated blood is only given to a CLL patient only if they have had any form of treatment etc. It us really confusing, but I have printed off the info and will take it with us on the 18th. I understand the reasoning behind colorectal wanting him to have blood but when we saw Dr Schuh on the 15th June she said they could give him a blood transfusion but he would probably need another one in a few months time so this is why I'm so confused.
Crafty-Girl is right. It is only treatments that contain Purine analogues such as the FCR in FCR or the B in BR. Treatments with monoclonal antibodies or inhibitors aren't a concern.
My husband has been having weekly been transfusions for the past 6 months Susie, due to low haemoglobin count.
I think everyone is different with different needs. Be guided by the medical team, you are in good hands with Dr Schuh.
My husband is still on a long road being treated with Idelalisib and Retuximab but not sure that is working so a bone marrow biopsy is being done on Tuesday to see Just how infiltrated the bone marrow is with B-PLL apparently only around 1% of CLL patients have this.
I hope things go well on the 18th and you are reassured by the medical team ASAP.
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An update 
Update.
another quick update 
update
Have others heard from the government about being classed as vulnerable because they have CLL? 
