How many units of blood?

[Nick A]

My mom, 79 yrs, was diagnosed with MDS last July. Aranesp and Vidaza have been discontinued. Each month when she is very fatigued, she goes to the doctor, and a CBC is done. Each time it comes around, hemoglobin 5.x, and then she gets a blood transfusion. Yesterday she had 2 units when hemoglobin was 5.6. This time she has not recovered like she used to before, and I think it may be because more units are needed. Feels dizzy, confused, and very tired.

Is 2 units the norm? I want to ask the doctor this. Each unit raises the blood by 1 pt. So at 5.6, 2 units raise it to 7.6.

Thank you for the help
Nick

[Pat Lawson]

Nick,
My husband had quit responding to treatment in May and has exhausted all other treatments. He has been receiving blood and platelet transfusions weekly since. They were giving him a transfusion when his hemoglobin dropped below 8. But in these last few months they changed it to 7.5 and if he gets below 7 we can tell because he is dizzy and can hear his heartbeat in his ears. He is tired all the time and pretty much spends his time in bed. Everyone seems to be different on there threshold so I would talk to your doctor and see if she could be checked more frequently so that she doesn’t get so low. Take Care…I wish your mom the best…God Bless you and your family, Pat

[Nick A]

Thank you, Pat. My mom has those same symptoms. Can you tell me how many units does he get each time now?
I wish your husband the best. It is a tough time. I have an appt with the doctor Tuesday.

The sad thing is my doctor is also recommending hospice considering her age.

Many thanks again
Nick

[Pat Lawson]

My husband was in a clinical trial of Vidaza and Venetoclax from Nov 2018 to Jan 2020 and he quit responding. So he tried Decitibine but had no response to that. He is 66 years old and the transfusions are the only way for him to keep living. He has been receiving 1 unit of blood and 1 unit of platelets each week since May. Because he has received so many blood transfusions he has iron overload but the doctor has chosen not to do anything at this time. We have him in Palliative Care so that he will be able to transition to Hospice when the transfusions dont seem to be working anymore or he decides to stop. The amazing thing is for the last couple of weeks his platelet count has started to rise and he has not had to get platelet transfusions. The doctors are amazed that he hasn’t gotten an infection because his numbers are so low but I think its because we are being so very safe because of Covid.

[Pat Lawson]

Nick,
There are different types of MDS. My husband has high risk MDS with excess blasts (RAEB1) and after his last biopsy in May they said he was transitioning to AML. There are medicines out there that help with blood transfusions. Unfortunately for my husband they will not give it to him for his type of MDS. There is a list of Centers of Excellence on this site that would be worth looking into to see if there is a site near you. The doctors at these centers are very knowledgeable about MDS and if you are just seeing a local hematologist it would be the best thing you could do for your mom.

[Nick A]

Thank you! I will look into the Center of Excellence. My mom has low MDS risk with increased T cells (62%) per her bone marrow report.

Thanks for such a detailed response. It sure helps as I am trying to understand all these things.

Nick

[Kathy Stermer]

I am 62 yrs young and also transfusion dependent after failing treatments opting for supportive care only since last September. Quality of life has been good and go every 2-3 weeks for 2 units of blood when hgb gets into low 7’s and I feel it. One thing to discuss with your physican is treating the symptoms your mom has with transfusions but also considering that older people can get fluid overload which can stress the heart if too much blood or given too fast. Palliative care services are a great option and have helped me over the past 3 yrs with coping. Was given a prognosis of 6 months about 6 months ago and still enjoying everyday I feel good. Have all my end of life details in order and taking it one day at a time.

[Nick A]

Thanks, Kathy, for sharing. My mom is in palliative now, but we are looking at the hospice for her. The disease is tough since the person talks and does everything well, but you know it is not working.
I wish you the best. Thank you

[Michael Cassavaugh]

SW Florida has had a blood shortage, so red blood has only been given when he drops below 7 and only a single bag. Platelets have to be less than 10 to get a bag.

He stopped transfusions about 2 weeks ago and joined home hospice care- the transfusions were lasting the week but he wasn’t feeling well and was tired and not eating much. It’s a tough decision to decide to stop, but in his case the transfusions were keeping him alive but no longer allowing any quality of life.

(79 year old high risk mds with TP53 gene variant)

• This reply was modified 1 month, 2 weeks ago by Michael Cassavaugh.

[BRIAN BRIAN]

I get 2 units every week — this has been going on for nearly 80 weeks.

My HgL has ranged from 2.8 to 7.1 over that period — averaging 5.675.

Last week they put me in the hospital because I had a slight fever . . .

I went into the hospital with HgL of 4.5 — and immediately got 2 units of blood. Six hours after the transfusion, HgL was 5.0.

They gave me another unit the next morning and HgL went up to 5.4.

It wasn’t till 2-days later that I got another blood draw in my docs office and threw a 6.3.

The point per unit rule isn’t real. Your results will vary and nobody has given me a reason why that makes any sense.

As far as how many units per patient — I always figured that was determined by how far away from your target level you are — and I’ve never met anyone who got 3 or more units in a week’s time unles it was a dire situation.

Hope that helps.

BFey

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