On Dacogen and Needing Blood

[Amy Clark]

Hi! Has anyone needed lots of blood transfusions while on Dagogen? If so, did they taper off after a while? Or did something else happen like they stopped taking it?

My husband is on round four of Dacogen and has received 6 units of RBCs the first round, then 4 units the second, 4 units the third and likely another 4 units by the end of this round.

(He had two units on 2/9, and today the Hgb had only gone up by .6, so he will likely need two more on 2/14 when he goes back for labs.)

Just hoping to see what others’ experiences have been.

The Dacogen makes him beyond exhausted. I am amazed anyone can work while on it. Additionally, his ANC goes below .5 for three weeks at a time. It likes to hover between .05 and .30. And while his platelets dip low, he has only needed platelets once when they were 14K. We are thankful for that silver lining.

God bless you.

[Donna]

Hi Amy………I don’t have answers to your questions, but I am about to start Dacogen probably around May. Do you mind me asking how low your husband’s counts were before he started Dacogen. I’m wondering how low they drop when you start it. My platelets are my biggest problems and they have been under 50,000 for the past 3-4 months. My WBC is around 1.8. My RBCs are not too low and hemoglobin is always in the 10s. I am glad to start Dacogen before my counts are too low because I fear what happens when they drop. Any information will be helpful.
I hope your husband begins to feel better and have less transfusions.

[christina neumann]

Hi Amy,
My husband just finished round 3 of Dacogen and has continued to need both platelets and blood. We’re hoping that the need for both starts to drop with this round but as of today, he’s going in for platelets. His hemoglobin is 10.6 so for us that’s terrific as it has been below 8 often. Also, his energy has been pretty good overall so we’re happy about that too. It’s hard to know what to expect so hang in there.

[Rose eden Guanzon]

My husband has RAEB II.before we started Dacogen, his platelets were at 12000. At one time it was at8000. His WBC was at. 5 – .8. But the.8 was already on the 4th decitabine cycle. It went as low as.3 at one time.he started responding on the 4th cycle.for the last 6months, he had not needed a blood transfusion anymore.

[Marion Vess]

My 80 yr old spouse, just had 3 days of Of dacogen. .Mds 20 years. procrit many years.. in the past many transfusions and once a week injection of arinesp..when do side affect start after dacogen? Also has hemochromatosis..exjade given daily for overload of iron..double edge sword..when getting transfusions..iron in blood .

[Marion Vess]

Hang in there…They say (I don’t know who they are) but it goes with the turf..getting worse before getting better…My spouse just had his first dacogen on Monday…He is exhausted, but not having blood tested until Wed..(I think) So confusing dealing with all these words..Good luck to all🙏🏻

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