transfusion question

[Jeff Joseph]

My wife has MDS and is transfusion dependent. So far, none of the drugs (such as Revlimid) have helped the underlying disease; the transfusions of RBC make her feel much better, however.

Question: How do doctor's decide how many units of packed cells to give a patient? I get the feeling that they look at the HGB value, check the patient's weight, and go to a (perhaps mental) chart that says "2 units" or whatever. Is there an actual formula that is used to determine how much to give in a given situation?

Thanks,

Jeff Joseph

[Loretta]

Jeff, If my Hemoglobin counts are in the upper 8's (8.6-8.8) I get 1 bag. If it drops below 8 or 8.2 I get 2 bags. I've never received more than 2 bags. Even though at times my counts dropped to 6.7, 7.3, 7.6, etc. Loretta

[Jeff Joseph]

I'm trying to figure out how that's determined. I presume one's weight factor's into this as well.

My wife's count dropped to 5.6 at one point. They gave her 2 units (which brought it up to around 8.2 or so) and sent her home. Four days later, they gave her 3 more units, which brought it up to about 10.5. Clearly, the first 2 units were not enough.

Then last week, she was 6.8 and got 2 units (which brought her up to around 8.6 I think). And they sent her home. I can see already that she needs more packed cells and will be bringing her back in.

I want to be able to speak the doctor's language on this when I say that she needs more than 2 units to start with.

thanks,

Jeff

[Wendy Beltrami]

Jeff-
My son always gets 3 units. He doesn't get transfused until his hgb drops below 8. A rough estimate is that each unit will bring him up 1 point in hgb. Usually for him,its brings him up a little higher than that and therefore, he usually goes 4 weeks between transfusions, dropping a roughly a point +/- per week.
If he got fewer units, he would just be back in for transfusion that much sooner. At least that's how it has worked with him

Wendy/mom to Grant
age 15
dx 12/4/98 AA

[Marlene]

Hi Jeff,

John had a trasfusion goal of also. If his HGB was between 8 - 8.3, then his doc set him up for a transfusion....and it was always two units.

There were two times when he received more than the standard protocol. When he was first diagnosed his HGB was 5.5....he was hospitalized and transfused through the night. They gave him 4 units plus platelets.

The second was during treatment. Again he was hospitalized. He was bleeding a lot and needed more than two units.

Two things come to mind for your wife. One is to set a transfusion goal. They can vary from person to person depending on how they feel/handle a low HGB. Some do OK at 7, others at 9. Your wife and her doc need to figure what is appropriate for her. Once she reaches it, she should be scheduled for two units. This may require you to have more frequent CBCs to see how long she can go after a transfusion before reaching her goal. That way she won't drop to six and need more than two. She should also watch for signs that her HGB is getting low. How pale are the palms of her hands, headaches, fatigue, mental alertness, etc.

Second, it's pretty hard to get more than two units at a time in an outpatient setting because it can take 5 hours to get the two units in. So I can see why they would bring her back a second time.

At John's worse, he was getting red cells 2x week. It then spaced out to 1x/wk, to 2x/mo to 1x/mo to nothing.

John is in partial remisson from SAA with stable counts.

Hope this helps.
Marlene

[Jeff Joseph]

We have Kaiser, but where we live there is no hospital, only "Urgent Care". So first we have to go to Urgent Care; they send her to the local hospital for transfusions. This takes hours. By the time 2 units are in, about 18 hours has passed. We're going to try to go to the Kaiser hospital an hour away next time; seems like it would be worth the trip.

In any event, I don't think they're getting her red count high enough; discussing with the oncologist next week.

Jeff

[Wendy Beltrami]

Jeff-
When you next see the doctor, ask him/her about planning ahead for transfusions. When my son gets 3 units of prbcs and one of platelets, we are usually at the hospital for about 10 hours maximum if we plan ahead. Approx two hours per bag of red, one for the platelets, allow for flushing and change of tubing between each bag and lasix between the 2nd and 3rd bag of reds. It is a LONG day but can be much longer if we don't plan ahead. We usually go in to the lab the day before to get a cbc and type and cross match. At our hospital (and I assume at others) this has to be done every time. I have also made it known that if the blood products they send aren't fresh, I will send them back so now, the blood bank calls me to tell me the expiration dates for my approval before we even get there.
There is no sense in giving someone who is transfusion dependent, red cells that will soon be expiring. I tell them to save those for someone who needs it for surgery, etc or some other one time deal. Not someone whose life is dependent on it. I refuse to let my son get a product that is ready to expire. Why should he take on all that iron, spend all that time and money, not to mention take on the usual risk of transfusion and not get the absolute maximum benefit from the product. It DOES make a difference. After a year of getting transfusions, believe me I know. I chart every transfusion and I was able to track that the fresh ones lasted longer.
I also make sure that I see every bag and check the info myself to see that it is the correct blood type, that the product is irradiated and that the expiration date is reasonable. You have to be an advocate for your wife.
There's no reason why everyone shouldn't be agreeable to this. The longer your wife can go between transfusions, the fewer bags of blood she will need and that is good for everyone.
I won't let him get prbcs that aren't at least 3 weeks from expiration date. Don't let anyone tell you that isn't possible. Even after irradiation, it is possible. We often are able to get them nearly 4 weeks from expiration.

Wendy/mom to Grant
age 15
dx 12/4/98 AA

[Jeff Joseph]

Thanks for the info on freshness; I had no idea. Will discuss tomorrow...

Thanks,

Jeff

[Steve Kessler]

Hi Jeff,
The docs first look at the HCT or HGB. HGB is usually 1/3 of HCT. There is no hard and fast rule, but TX's are usually given when the patient feels weak, somewhere between 20-24 HCT for most people. Some younger people who lose count gradually may go substantially less than 20, but that's unusual. Each unit is sufficient to raise HCT in the range of 3-4, and the goal is to get you up to around 32, so if you are at 24, two units would add 8 to the count, thus getting you into the desired range. Body mass is a factor, but the primary thing to look at is, "What's necessary to bring me into the desired range?"

[seniorrico]

I am getting good results with Dacogen

[Neece]

Originally Posted by Jeff Joseph

My wife has MDS and is transfusion dependent. So far, none of the drugs (such as Revlimid) have helped the underlying disease; the transfusions of RBC make her feel much better, however.

Question: How do doctor's decide how many units of packed cells to give a patient? I get the feeling that they look at the HGB value, check the patient's weight, and go to a (perhaps mental) chart that says "2 units" or whatever. Is there an actual formula that is used to determine how much to give in a given situation?

Thanks,

Jeff Joseph

Hi Jeff,
In receiving transfusions, another factor to consider is how much fluids a person can handle. I would imagine that most can handle 2 units, that is what I have received. I did receive 3 when I was first diagnosed and once when I was very low and about to travel. The standard is 2 units. I have never heard of weight being a factor. Usually just HGB and age. Wendy mentioned her son gets 3 units, he is young and his body can filter out the excess fluids. As we get older , you have tobe careful of that. So my suggestion would be to have her receive the 2 units , get her to a comfortable HGB and then do not let it get lower than that. I used to be able to handle a 7 - 8 HGB but being more active now and get older - 8 years later, I don't like going under 8. So shoot for a HGB level that is comfortable for you and transfuse when it gets lower than that. Good-luck, Neece

[Steve Kessler]

I'm 67 years old and have been receiving 3 units most times, sometimes 2. I'm 5'-4" and 140#, so my body mass isn't much of a factor. If worried about the amount of fluids in the body, my doc prescribes Lasix. It blows the water out like crazy! I usually go into the hospital overnite, as 3 units takes about 9 hours. when on Lasix, I'm probably up and into the bathroom about 8 times during the nite. Lousy sleep pattern!

I've seen a recent article saying that most patients need 3 units at a time, but a lot of docs are reluctant to prescribe that much. I think they are worried about getting the HCT too high. I believe 35-37 is the max and 32 is a minimum goal. Check your post tx numbers to see if you are in the right range.

[choijk]

Hi Steve,
Do you mind if i ask where your hgb is before you need to be transfused? My dad receives 2 units but last week he only received 1 unit when his hgb was at a 8.1. I noticed that our hematologist keeps him around the 9-10 hgb range.

[choijk]

Hi friends,

My dad's transfusions appear to be getting closer. From a 8 week interval, to a 4, we are down to a 2 week interval. I know that MDS isn't staged like other types of cancer (Stage I, II, III, IV), but can more frequent transfusions be a sign of progression? Even though I'm so scared right now, I am trying to take things day by day without thinking too far into the future. But sometimes late at night, there is this lump in my throat and ache in my heart that just won't go away.....
Thanks for all your thoughts and input.

[Neece]

Originally Posted by choijk

Hi friends,

My dad's transfusions appear to be getting closer. From a 8 week interval, to a 4, we are down to a 2 week interval. I know that MDS isn't staged like other types of cancer (Stage I, II, III, IV), but can more frequent transfusions be a sign of progression? Even though I'm so scared right now, I am trying to take things day by day without thinking too far into the future. But sometimes late at night, there is this lump in my throat and ache in my heart that just won't go away.....
Thanks for all your thoughts and input.

I believe the only way to determine if things are getting worse ( progrssing as you put it) is with a BMB .When was his last test done? Possibly it is time to repeat it to get some definite answers.
Neece

[choijk]

Thanks Neece for the reply. My dad's first and only BMB was conducted in February 2007. How often are BMBs conducted?

[Steve Kessler]

Hi June,

I think I'm like most others in that my doc won't transfuse me with hgb above 8 or HCT above 24. I generally start feeling weak around that level and check in for a CBC. I can usually peg it pretty closely. I typically lose about 2 counts a week on my hct, so if I start at 32, I need tx in about a month.

I'm in a trial where I have to be monitored closely, so I have a BMB every 3 months. So far, after 7 months on Vidaza and Enbrel, I seem to be a non-responder, getting slowly worse. Excess blasts about 11% now with tri-lineage dysplasia, 5q- and 11q23-.

Still working full time, but starting to get tired of it, probably stop in 3-6 months.
Steve

[Tom M]

Hi Jeff,

Probably the most important factor in transfusing is how a person feels and appears. The number of units will depend upon the hgb and hct, but most people I know usually get 2 units at a time unless their results show them dangerously low. When a person gets more than 2 units, additional care needs to be observed, especially if they have underlying cardiac problems. That is when lasix will be given while being transfused to remove excess fluids so the heart isn't overworked and the lungs don't fill up with fluid. The time transfusing each unit may also be lengthened to 3-4 hours per unit.

I usually feel fine at a hgb of 7, but I am more tolerant of a lower blood count than most. I have been living with thalasemia, non-transfusion dependent, all my life and have been running on 2/3 of a tank since birth. Now, with MDS, I do require transfusions every 3-4 weeks. I try not to go below 6.5, but sometimes I do. Again, I base it on how I feel.

[Neece]

Originally Posted by choijk

Thanks Neece for the reply. My dad's first and only BMB was conducted in February 2007. How often are BMBs conducted?

HI, Sorry this reply is so late. I have a BMB every 3 months. So January to now , you are good, possibly close to another one soon. You will hear many different time frames amongst patients here. Talk to your doc and see what his plans are for the next BMB.
Neece