Hi Everyone....Dad with MDS....now on Dacogen

[sophia68]

My dad (who will be 80 in Nov) has been struggling with MDS for about 2 years now. He was receiving the weekly injections Aranesp and then Procrit, however, neither of these were raising his blood count which stagnated at @7. A couple of weeks ago his doctor started giving him Dacogen and his blood level dropped to 5.1 and he had to have a blood transfusion. He's now experiencing the many side effects of dacogen (constipation, nausea, fever, chills, etc.) and I was wondering if anyone has any suggestions in how to manage these side effects. Also, if anyone has been treated with Dacogen, do the side effects lessen with each treatment? Has anyone experienced positive results with this drug?

[Birgitta-A]

Hi Sophia,
Many memers have reported positive results with Dacogen. Please search Dacogen at Search in the Meny of this page.

Nausea is a very problematic adverse effect with most chemos. Here is a link about treatment. If your father have severe nausea with vomiting he should not only have Kytril or a similar drug but dexametasone and Emend as you can read in the article.
http://theoncologist.alphamedpress.o...full/12/9/1143
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for iron overload, Neupogen 2 injections/week for low white blood cells, asymptomatic

[sophia68]

Originally Posted by Birgitta-A

Hi Sophia,
Many memers have reported positive results with Dacogen. Please search Dacogen at Search in the Meny of this page.

Nausea is a very problematic adverse effect with most chemos. Here is a link about treatment. If your father have severe nausea with vomiting he should not only have Kytril or a similar drug but dexametasone and Emend as you can read in the article.
http://theoncologist.alphamedpress.o...full/12/9/1143
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for iron overload, Neupogen 2 injections/week for low white blood cells, asymptomatic

Thanks for responding. My dad had to be hospitalized for neutropenic fever/possible sepsis. He's feeling much better. WBC is rising, RBC dropped and he may need a transfusion before he leaves the hospital. We're not sure if daddy (given his age) should continue with the Dacogen. We're concerned he's not strong enough to withstand this treatment.

[Birgitta-A]

Hi Sophia,
You know I got neutropenic fever Aug 2007 after four infections without Dacogen and other chemos. My white blood cells had been OK before but since then I have to take Neupogen 2 injections/week. I have managed to avoid infections the last year and feel fine.

Many MDS patients choose - as I have done - to only treat symptoms with packed red blood cell transfusions, iron overload with iron chelators and low white blood cells with Neupogen or similar drugs. Then low platelets will be a problem. I prefer quality of life before quantity but everyone is different and there are no fixed rules for treatment.

We hope that new and better drugs will come but today I don´t think there are any better drugs than Vidaza or Dacogen exept Revlimid that has best effect on patients with 5q chromosome aberration. The response to Vidaza and Dacogen often takes four cycles (that is four months). Revlimid works faster.

Hope your father will continue to recover when his infection is treated!
Kind regards
Birgitta-A

[sophia68]

Originally Posted by Birgitta-A

Hi Sophia,
You know I got neutropenic fever Aug 2007 after four infections without Dacogen and other chemos. My white blood cells had been OK before but since then I have to take Neupogen 2 injections/week. I have managed to avoid infections the last year and feel fine.

Many MDS patients choose - as I have done - to only treat symptoms with packed red blood cell transfusions, iron overload with iron chelators and low white blood cells with Neupogen or similar drugs. Then low platelets will be a problem. I prefer quality of life before quantity but everyone is different and there are no fixed rules for treatment.

We hope that new and better drugs will come but today I don´t think there are any better drugs than Vidaza or Dacogen exept Revlimid that has best effect on patients with 5q chromosome aberration. The response to Vidaza and Dacogen often takes four cycles (that is four months). Revlimid works faster.

Hope your father will continue to recover when his infection is treated!
Kind regards
Birgitta-A

Hi Birgitta,

Dad is still in the hospital. After his platelet count bottomed out, his hgb dropped to 6.1 and WBC 0.8, he had a blood transfusion on Saturday. He counts are rising, hgb now 8.4, WBC 1.2. However, he started spiking a fever again and sounds very congested. Looks like he has the flu now. His oncologist has ordered xrays for his chest.

So you no longer receive chemotherapy treatment?

Sorry I am not familiar with all the terminology, when you mentioned "chromosone abberation" what does that mean?

Thanks for all your help with this.

[Birgitta-A]

Hi Sophia,
Hope your father is receiving an effective antibiotic drug - when I had neutropenic fever I got Tazocin intrevenously with very good result.

I have never accepted any chemos since I am so afraid of the adverse effects like low platelets - mine are already very low (last count 37). I hoped that there would be new drugs for low platelets available but the first one called Nplate is not at all OK for MDS patients.

Chromosome aberrations are disruptions in the normal chromosomal content of a cell and very common in white blood cells in MDS patients. If your father has an aberration called 5q deletion Revlimid should be the best drug for him.

For the moment the most important issue for your father is the infection or infections. Is he not receiving Neupogen or a similar drug for his low white blood cells as well as antibiotics?
Kind regards
Birgitta-A

[sophia68]

Originally Posted by Birgitta-A

Hi Sophia,
Hope your father is receiving an effective antibiotic drug - when I had neutropenic fever I got Tazocin intrevenously with very good result.

I have never accepted any chemos since I am so afraid of the adverse effects like low platelets - mine are already very low (last count 37). I hoped that there would be new drugs for low platelets available but the first one called Nplate is not at all OK for MDS patients.

Chromosome aberrations are disruptions in the normal chromosomal content of a cell and very common in white blood cells in MDS patients. If your father has an aberration called 5q deletion Revlimid should be the best drug for him.

For the moment the most important issue for your father is the infection or infections. Is he not receiving Neupogen or a similar drug for his low white blood cells as well as antibiotics?
Kind regards
Birgitta-A

Hi Birgitta,

Yes, my father is on antiobiotics (not sure of the name).

Wow, your platelet count is very low. As of yesterday, my dad's platelet count was 242. His WBC 1.2, HGB 8.4. He seemed alot better yesterday. His breathing has improved. Chest xrays were negative for pneumonia (only a trace of fluid in the lungs). Fever was down to 37.6. I'm not sure if he's receiving neuprogen for the low WBC.

I found my dad's original bone marrow biopsy report which states no clonal chromosome abnormalities. He has RARS - Thrombocytosis and eosinophills present. From what I have researched dad is at a low risk for his MDS to progress to AML. If this is true, why would his hemo put him through inductive chemo?