What's the danger in longterm use of filgrastim (Neupogen)?

Hi @marco88. I read through your replies in a few other posts this morning to see where your husband is in his treatment for MDS with the 5q deletion. There are different subtypes of MDS requiring their own treatments. In your husband’s case, Revlimid appears to be the go-to plan of action. But it looks as though he is no longer able to take it, do to some kidney issues which developed.

With MDS, there’s ’trouble in paradise’ inside the bone marrow where blood products are produced. When the marrow isn’t able to turn out healthy, useable blood cells at a normal rate, the body is left wanting for red cells, white cells or platelets or all of the above. The side effects are often extreme fatigue, bruising from low platelets or susceptibility to illness with low white blood counts (neutropenia). Reduced platelets can cause easy bleeding and difficulty in clotting.

If your husband is no longer on current medication for treatment, it sounds like his hematologist is doing the best they can to keep your husband’s marrow producing red blood cells and white blood cells with Retacrit and Neupogen/Filgrastim injections that he’s receiving weekly. Without these meds his marrow is underproducing these vital cells.

These medications can be a doubled edged sword. Yes, there may be potential risks for long term use of these products, but in my understanding, the greater risk at this time would be to not receive these medications. The Retacrit is stimulating the development of red blood cells to help him avoid being transfusion dependent. And without Neupogen his white blood count may become dangerously low to where he no longer can fight infections.

As a side note, often for people who are taking Neupogen, it’s suggested to take Claritin antihistamine capsules for several days surrounding the injection. It helps with bone pain.

You mentioned your husband is also an easy bleeder. What is his platelet level?

Thanks, Lori. Some time has passed… with platelets ranging from 120s to 140s since December 2024; now at 215 on a range of 140-440, so that’s good. Hemoglobin though is steadily declining from 11.8 in December to 9.1 yesterday, going down a fraction at a time, but always down, not ticking up then down again. His ANC is 1.03 - up from 0.85 a week ago, with a WBC of 2.3; both fairly stable and far too low.

He is so fatigued he can barely walk 30 feet or so. Since 2018 he’s been first on weekly Procrit, then Vidayza, then Revlimid until CKD stage 4 which prevents using Revlimid which apparently contributes to kidney disease- not quite on dialysis yet, but the fistula has matured. Each protocol has produced results for about two years. Now he’s on weekly Procrit/Retacrit 60k units and Filgrastim 480 mcg weekly. I see the decline all over his weekly CBC reports, believing he has only a few more months until he’ll need transfusions. What then? Rytelo? Back to Revlimid if he’s on dialysis and the CKD no longer is a Revlimid issue?

Strangely enough, bone pain subsided a month or so ago. No longer on Claritin.

I’m not even sure what I’m asking for here… I suppose we have to follow wherever this disease leads him.

We are devastated that the administration took away government funding for cancer research of all kinds, after first terminating it, then saying oh we’ll keep funding, but now learning funding was pulled after all. Private funding does have limits. The Leukemia & Lymphoma Society states that Federal government “immediate cuts to biomedical research” include cuts “across the board for all current and future blood cancer research supported by the National Institute of Health”.