Hemoglobin numbers required for transfusion.

[lynne]

I have had MDS-RARS since 2001,and get transfused every three weeks. What is your hematologist’s protocol for your hemoglobin number to order transfusion?

[Allan Romriell]

Lynne,
I don’t have an answer to your question as I was just diagnosed with RARS in July 2017 and am in the wait and watch stage at this time with hemoglobin numbers in the 11’s WBC normal and platelets between 98 and 155 since june. I was wondering if you would mind giving me some of your history seeing as how we both have the same variation of MDS. I am 64 yr old male, my Dr noticed low blood count numbers in april during blood workup for a regular physical. He set me up with a specialist who examined me and ordered BMB in June which confirmed MDS-RARS I have been researching all I can but would appreciate any input you may be willing to give of your experience. I realize all cases are different put first hand knowledge would be useful. I also know this is a personal battle and understand if you don’t want to share that with this forum. All the best in your quest. You do pose a good question that I think I will ask next month when I return to my oncologist for my bimonthly follow up.
Thanks again,
Allan

[carole emmett]

hello lynne
it might be that different hospitals and different trusts have different criteria but with mine it needs to be below 9 before they will transfuse.
all the best
carole

[Jeanne Radigan]

My mom’s office practiced hemoglobins below 8….we are now transfusing my mom based “on symptoms, not numbers”, as she has had many transfusions and has built up a lot of antibodies in her blood and it is now difficult to type match her blood. Her last transfusion was last week, she was admitted to stay in the hospital — hemoglobin was 3.8…..much too low

[David Spicer]

Jeanne, thank you for posting. As my husband and I experience a series of “new normals” with his MDS, some of the numbers get pretty scary. His hemoglobin has been in the 6s a couple of times and we were pretty worried, so I found some relief in seeing that someone survived a 3.8 – not that I would wish any of this on anyone. We’ve seen platelet counts of 4 and neutrophils of 0.0 ourselves. So levels that we used to find frightening are now cause for relief, when platelets hit double digits or neutrophils get all the way up to 0.2 – it seems surreal at times.

[flamom5000]

I’ve also been diagnosed with MDS in 2011, later classified as RARS. For the first few years, it was watch and wait, then I started Procrit injections, which didn’t raise my Hemoglobin enough to continue with that. I was referred to Moffitt Cancer Center. Soon after, I became transfusion dependent, and their protocol is to infuse if the Hemoglobin is below 7, unless you are experiencing symptoms. I’ve been in the low 6’s several times, but the transfusion brings it back up to 10 or 11, and I feel great. Now, I’m with a local Cancer Center and have recently started taking Revlimid. Their protocol is the same, to transfuse when HGB is below 7, unless you are experiencing shortness of breath or fatigue.

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