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The Doctor Came In Smileing Ear To Ear!

Hi everyone,:)

Hope you had a wonderful holiday. My husband finished his 2nd treatment of Dacogen on Friday , Dec. 19, 2008. Monday we went back to doctor for blood check and supposely more blood.

Wonderful news he did not need blood! The doctor came in the room smileing from ear to ear. My husbands counts went up from
hemoglin 9.0 to 9.6, his red blood cells went from 2.96 to 3.03, his platelts went from 46 to 86 and his white blood cell count jumped from 1.9 to 2.8. These figures are the highest he has had since October 27, 2008, even with him getting transfussions.

He did inform us that since he just finished treatment Friday , the counts could go down some. He goes back to the doctor on 31st of Dec.

Needless to say we had a wonderful Christmas and were not as afraid to be around family as we were, though we were still very careful.

Today is Sunday and yesterday my husband started feeling more tired and his coloring is not as good as it was, but thats ok, we still got 4 more treatments to go! He seems to have a lot of pain in his joints, espceially where they did the bone marrow test in October, but the weather has been rainy and cool, so this could account for some of his pain. His lower personal body parts are still numb from where they messed up and caused a blood clot (or something like that) when they did the bone marrow test. The doctor can not tell us when this feeling might come back.

Well that is my good news hope it gives some of you hope.

Sincerely,
Anne:)

Happy about Dean's results

I am glad Dean's counts are improving so much so early with Dacogen. That is very encouraging. I appreciate your positive attitude and the advice you gave in your previous posting. My husband was diagnosed with RAEB-1 in April 2008. He is 62. What were your husband's red, white, and platelet counts when they started with Dacogen? What did they try before he started on Dacogen. My husband has used Procrit and has had two red blood cell transfusions. The doctor is talking about starting chemotherapy. We are trying to decide whether to wait a little longer or begin the chemotherapy. Any advice?

dacogen is a form of chemo

Dear DianeD,

Go with the chemo , that is what Dacogen is! My husband has not had any other treatment except the Dacogen. He has received red blood cells, and platelets. Here is a list of what his counts have been and what he has received. We go to Duke University in Durham, N.C. His ontocologist specializes in this field, from what I understand he is one of the best, I have asked him about some of the other treatments, because the Dacogen is new, it has not been released long for treatment, from what I can see. His name is Dr. Carlos DeCastro.

Husband diagnosed 10-2-08.

Code:

date  hemog.  red blood  platelets  white blood  treatment

10-2   10.3        3.18         56          2.8  nothing

10-6   10.4        3.16         71          2.5  nothing

10-27   8.1        2.12         36          1.4  rec'd red blood cells

10-31   8.3        2.60         27          1.5  rec's red blood cells

11-10   8.6        2.77         41          1.7  rec's dacogen chemo

11-11                                            rec'd  dacogen  chemo

11-12                                            rec'd dacogen chemo & 2 units blood cells

11-13                                            rec'd dacogen chemo

11-14                                            rec'd dacogen

11-17   9.5        3.14         29          1.2  nothing

11-24   8.1        2.60          5           .9  rec'd blood & platelets

12-1    8.0        2.64          2           .7  rec'd blood & platelets

12-10   7.4        2.42         22           .9  rec'd blood & platelets

12-15   9.0        2.96         46          1.9  rec'd chemo dacogen

12-16                                            rec'd dacogen chemo

12-17                                            rec'd dacogen chemo

12-18                                            rec'd dacogen chemo

12-19                                            rec'd dacogen chemo

12-22   9.6        3.03         86          2.8

12-31  10.6        3.19         84          2.9

My husband starts the dacogen chemo again on the 12th of January. His counts going up were very unusal as past patients have not shown an increase until after the 3rd round of dacogen.

I have asked my husbands doctor about the other things that I have read in the forums and he was against using them, at this time, he says that the chemo needs to do its work and see what the results will be.

I have read very few reviews on the chemo (dacogen) my husband is taking, not sure why other drs. are not using it, as it seems like we are starting to get great results after the second round.

During this time my husband has been very weak, lost weight, lots of bone pain. We were not expecting anything to get better till after the 3rd treatment, and already he is feeling 75 % better.

Wish u all the luck in the world.
anne