Neupogen dependency from Dacogen?

[judy f.]

I am new to this forum and have many more questions than answers, but wanted to share my dad's experience with Dacogen. He is 90, but in fairly good health other than having MDS. His doctor recommended using Dacogen when my dad's blood counts began to drop. My brother and I were worried about the effects of chemotherapy on someone my dad's age, but the doc strongly recommended trying it. After 4 cycles of Dacogen, given every 28 days, my dad is now receiving neupogen injections 5 days each week due to his consistently low WBC--today it was 0.4. We were told that he is neupogen dependent. His doc decided to stop the Dacogen when we expressed our concerns and has scheduled another BMB in a couple of weeks; he also is talking about beginning a new drug, but hasn't told us which one--he wants to wait until after the biopsy. This doc has been less than forthcoming about explaining side-effects, etc. to us, although my dad is unable to fully understand the implications of this disease and treatment. We plan to seek a second opinion, because we have lost confidence in the current doctor, but my dad still must undergo the injections and BMB. Has anyone heard of becoming neupogen dependent from Dacogen? We're worried that this might be permanent. (His RBC has remained over 10 and he just required a platelet infusion, but that hasn't been a major problem.)

[Neil Cuadra]

Judy,

It's surprising to hear of a 90-year-old (even one in otherwise good health) taking Dacogen. Less aggressive treatments are much more common for octogenarians and nonagenarians, for whom quality of life is typically of greatest concern.

From what I've read, a decreased white count (neutropenia) is an expected result of each round of Dacogen, occurring much more often that not. White counts typically get worse in the short term while you wait (and hope) for Dacogen to work after a certain number of cycles. So it makes sense for patients to get Neopogen to maintain their white count. A positive response from Dacogen can take longer than 4 cycles (which I know is a tough test of your patience). So I'm surprised that the doctor would stop Dacogen just because of a side effect that's par for the course.

I suggest asking your dad's doctor straight-out why he recommended Dacogen and why he decided (or agreed) to stop it. If he can't answers questions like those then I can see why you haven't put your trust in him, but perhaps he just needs to understand what information you want.

[judy f.]

Originally Posted by Neil Cuadra

Judy,

It's surprising to hear of a 90-year-old (even one in otherwise good health) taking Dacogen. Less aggressive treatments are much more common for octogenarians and nonagenarians, for whom quality of life is typically of greatest concern.

From what I've read, a decreased white count (neutropenia) is an expected result of each round of Dacogen, occurring much more often that not. White counts typically get worse in the short term while you wait (and hope) for Dacogen to work after a certain number of cycles. So it makes sense for patients to get Neopogen to maintain their white count. A positive response from Dacogen can take longer than 4 cycles (which I know is a tough test of your patience). So I'm surprised that the doctor would stop Dacogen just because of a side effect that's par for the course.

I suggest asking your dad's doctor straight-out why he recommended Dacogen and why he decided (or agreed) to stop it. If he can't answers questions like those then I can see why you haven't put your trust in him, but perhaps he just needs to understand what information you want.

Neil, Thanks for your response. The abrupt change in treatment surprised us, too. I think my brother and I need to insist that the doctor answer our questions more completely than he has been willing or able to do.

[Marlene]

Hi Judy,

I too am surprised by the recommended treatment. A second opinion is a very good idea. What you are looking for is someone to lay out all of your options and possible outcomes and expected side effects for each. This includes doing nothing. The one thing no one can do is to predict how your Dad will do with the treatment protocol he chooses. That's why you have to evaluate all options, decide what's most important to him like quality of life, etc. These treatments are expensive and time consuming. They take a lot energy. And the older you are, usually harder to tolerate.

At this point, if it was me, I wouldn't proceed with another BMB or drug treatment until you get another opinion. Then, if your Dad has a good primary care doc, I would sit with him to go over the options and get an un-biased opinion from someone who is not directly involved in treating the MDS.

If you decide you want to move forward with another treatment protocol other than growth factors and transfusions, then a BMB is a good idea. If not, I'm not sure why they would subject him to another BMB.

Here's info on the drug he was taking. You can look up all the other drugs for MDS here as well.
http://www.rxlist.com/dacogen-drug.htm

[judy f.]

Marlene,
Your idea to consult my dad's primary care doc is a very good one. My dad is comfortable with him, and he is also a geriatric specialist, which helps. Will ask what he thinks about the BMB. We don't want to put our dad through any more than is necessary. Thanks so much. Judy