[Neil Cuadra]

BeccaBoo,

I'm sorry that your Dad's treatment hasn't gone better and that it's been such a strain on you.

I'm not a medical professional but perhaps I can offer some information.

Do you go to your Dad's medical appointments? Have you asked his hematologist/oncologist why these treatments are being used? Is this a doctor who you trust? Sometimes doctors don't take enough time to explain their treatment approaches and the patient's status, so family members have to ask for explanations and speak up if something doesn't make sense to them.

When it comes to quality of life versus length of life, it's important for patients and their caregivers to speak up. These are very personal decisions.

Granulocyte colony-stimulating factors like Neupogen can boost white blood cell counts. If his white cell count is increasing, this may be why. Similarly, Luspatercept can increase hemoglobin, although as you say it's typical use is for lower-risk MDS. Research to find out when it can be beneficial is ongoing. Perhaps it will help, and if not the doctors may stop giving it to him.

I wouldn't worry that he's getting an MDS drug that causes MDS. They have to list all known side effects, even the ones that are rare. (For example, some antidepressants can cause depression.) The common side effects of Neupogen, like headaches, are usually tolerable or manageable, and the danger of a low white count is real. As with all drugs with side effects, doctors prescribe them when they think the benefits outweigh the risks, and with a serious disease like MDS all treatments have risks. But you and your Dad should have some say about these tradeoffs.

You mentioned proteins being destroyed or built up. It's not a contradiction. The chemo was intended to destroy "bad" MDS cells, while these agents are meant to build up "good" cells.

They aren't experimenting on your Dad unless he's on a clinical trial that he agreed to. When other treatments have failed, a trial can be the best option for a patient, even though the trial uses treatments that may or may not work and aren't yet approved for their condition. If your Dad's first-line Vidaza treatment didn't succeed, as it sounds, then unfortunately there are fewer choices for second-line treatment, but a lot of research has gone into identifying the best path forward.

In addition to asking questions here, I suggest that you contact the MDS Foundation and the Aplastic Anemia & MDS International Foundation, if you haven't already. They have information specialists and medical advisors who can address your concerns.