Father newly diagnosed

[run4peach1]

Thanks for the insight. Maybe the pneumonia is still causing problems with his counts, although that might not be good since they haven't given him any more antibiotics. Maybe given his age (78) it is possible that the infection is still causing his counts to stay down. You hate to hope for that, but I guess it's the lesser of two evils. Thanks for the well wishes. I keep you and everyone in my prayers.

[Bill F]

Hi run4peach1,

Thought I'd provide some details of my experiences with MDS as there are similarities with what your father has been experiencing, although I never had grossly elevated platelet counts. First of all I had received 42 units of packed red blood cells (prbcs) before my serum ferritin went over 1000 (1150 at that time) so I don't think it's likely that your father needs to be concerned just yet about chelation. I too had the Dacogen low-dose chemo treatment and similarly had very low counts following the first cycle; wbc 0.4 (ANC 50), hgb 7.5 and platelets 4000. These data were from a CBC 13 days after the last day of the five-day Dacogen cycle. This first cycle was at a dose of 20 mg/ square meter. Subsequent cycles were reduced to 15 mg / square meter. I fared much better with the dose reduction although my wbc and platelet counts still went fairly low, namely 0.7 and 8000 respectively. So the Dacogen hammered all my counts regularly and it was necessary to get platelets along with my prbcs. Fortunately, I only had a total of two platelet transfusions as one can become refractory rather quickly to transfused platelets. Now here's the good part, after four cycles of Dacogen, and an additional 14 units prbcs over five months, I was no longer in need of transfusions. So it's been almost two years that I've not required blood transfusions. Also note that I had the lowest response to Dacogen treatment, but hey, I had a response - many do not. The response categories are complete response, partial response, and hematological improvement with exacting criteria for same.

Hope and pray your father responds well to all treatment.

[run4peach1]

for all the insight. My Dad has been having a rough go of it. Hemoglobin was down to 5.7 a couple of days ago. Platelets now at 16. He is at the docs now, and after 2 pints he is at 7.6 hbg. The doc is trying Vidaza for 5 days, and he is giving him 2 more pints today along with a bag of platletes. He said it is dangerous to try the Vidaza with my Dad's counts so low, but I guess it's the only option. He said he is making red cells, but they aren't maturing. I was pretty down a minute ago (as is my Dad) but after reading your post, you gave me some hope, especially since you are close to my Dad's age (78) and have had success with dacogen. Not sure why they chose the vidaza this time. Of course he is getting nuprogen as well.

From what I understand, you usually get the weakest around 10-14 days after the treatment? I just pray it gives him some strength long term. You are all in my prayers.

[launch]

Hi runpeach4,

Please see my husband's response to Vidaza - posted under clinical trials (Clinical Trial e1905 ) . He's on Vidaza, but, for 10 Days (low dose - 105mg) in each 28 day cycle. The trial he's in included 2 groups, one with another drug called MS-275, but, my husband, Ron, was Not Selected (By random computer pick) and is in the group only receiving Vidaza. His counts are incrediable! Ron's feeling great too! Initially, ALL of Ron's counts were down (HBG, PLatelets, and WBCs). Now they look good!!!

Talk later, good luck to your Father on Vidaza...
God Bless,
Cindy

[run4peach1]

those are great numbers!! Amazing!! I am so happy for your success with Vidaza.

I don't want to get too personal, but can I ask how old is your husband? I was really down initially as the doc told me Dad his disease is getting worse, and he said the Vidaza "may" help. He is on the way for his second treatment as I type this.

Hemoglobins at 15+ is AMAZING!! I'll take 10 if he can stay at that for a while. Your story, as well as some the others, has given me some hope that Vidaza can keep this thing at bay for a while. My Dad isn't a young man (78) but he is in pretty good shape otherwise.

I pray for your continued success and the good health of everyone. Thank you for giving me a good deal of hope........

[launch]

My husband, Ron is 65 yrs old. He's in good health overall, but, is a cardiac patient (Mild Heart Attack 8 yrs ago - since then, been on blood pressure meds & cholesterol reducing meds (ie. Lipitor, Altace, Atenanol, and Niaspan). I'm just so please with how he's doing though with the Vidaza, I wish your Father equal response! We go tomorrow for appt w/doc and weekly labs... i post every week on Ron's progress....

[run4peach1]

Originally Posted by launch

My husband, Ron is 65 yrs old. He's in good health overall, but, is a cardiac patient (Mild Heart Attack 8 yrs ago - since then, been on blood pressure meds & cholesterol reducing meds (ie. Lipitor, Altace, and Atenanol). I'm just so please with how he's doing though with the Vidaza, I wish your Father equal response! We go tomorrow for appt w/doc and weekly labs... i post every week on Ron's progress....

Can't wait to hear about hopefully continued success. In my prayers as always..........

[run4peach1]

my Dad is back in the hospital after a slight fever (100F) and back pain. He has pneumonia again. Not to question the docs, but I don't think he ever got rid of it the first time. His family doc said, after he was done with his anti-biotics that he could see see the pneumonia in the X-ray, but it was OK and wouldn't come back. I don't think they gave him the full course of anti- biotics. Plus, it's in the same lung.

Anyhow, he is weak and depressed. I thought he tolerated the first course of Vidaza pretty well, but now this. I don't think they will be able to continue the Vidaza for a while now. I just hope he gets better. You are all in my prayers, please keep my father in yours.

[run4peach1]

My Dad's white count is dropping, and they expected it to go up with his pneumonia. His platelets went up to 177, which led the hematologist to suggest that the one treatment of Vidaza has worked for him. The bad news is that the hemoglobins and whites are low. He is getting blood today, and I hope they start him on nuprogen soon. The family doctor kind of depressed us this morning with the news that his whites are down to 1.6. I guess the antibiotics alone can't beat the pneumonia alone; they need help from the rest of his body. He has lost a good deal of weight as well. I'm just praying he can fight the pneumonia off and go from there. Please Pray for us as I do for everyone fighting this disease.

[Birgitta-A]

Hi run4peach1,
You know pneumonia is the most dreaded infection for MDS patients - perhaps your Dad got full treatment but he still got an infection. He can have another type of infection now and maybee needs another kind of antibiotics.

I hope - like you do - that they will give him Neupogen or a similar drug now because when the WBC:s are 1.6 the neutrophils are about 0.8. Then the risk for neutropenic fever is high. The first time you get neutropenic fever it is often quite easy to treat (bacteria) but next time it can be fungi or virus, that are much more difficult to treat.

It is obvious that your Dad's bone marrow is tired and can't make more WBC:s even when he has an infection and needs help from Neupogen.
Kind regards
Birgitta-A
Neutropenic fever Sept 2007 after 3 infections. Since then on Neupogen 2 injections/week with good effect

[run4peach1]

Neupogen today. His WBC was down to 1.2 today......he has a little fever mainly at night. They are going to check his lung to see if the infection is going away. He is still weak, but maybe a tad better today....he ate pretty well. I bet he has lost 10 pounds in the past month. Thanks for the support and Prayers............I am Praying for everyone as well.

[run4peach1]

My father has been doing well.......up to now. He responded to the Vidaza well.......his counts have been good......hemoglobin had hit 10.6, everything else ok.

I just found out that his hemoglobins have gone down to 9.5 as of yesterday, the first drop in some time. He isn't feeling as well obviously. He has had 3 rounds of Vidaza (and we were hoping that might be it for a while) and is due a BMB on Friday. Is this drop something to be considered normal? Could the vidaza have stopped working so soon?

Thanks again for all the insight. My Prayers are with you all.