Dacogen or Vidaza

[Zeke]

My Dad is 79 years old and was in good health. He felt weak and short of breath after the first of the year so he went to his doctor who sent him to the hospital. He had a transfusion, they gave him 8 units of blood on Jan 4-6th. Blood was in his urine after the transfusion. He has been to a urologist, tests were negative on crytology.

He went to a hematologist, Dr. Skelly on Jan 23rd and he was given 9 more units of blood . He was diagnosed with MDS, bone marrow biopsy, 18 out of 20 chromosomes are bad, pancytopemia, trisomy 8. He had one shot of Procit. Also he was given some antibiotics. The doctor’s recommendation was supportive care.

I arranged for him to be seen by Dr. Goldstein in St. Louis, MDS center of excellence on Feb. 8th. Red blood count was 8.6 He confirmed the diangosis of MDS and subtype RA. He recommended drug treatment of dacogen or vidaza. He had one unit of platelets given to him there.

My dad had a doctors visit locally with Dr. Skelly on Feb 14th. On the morning of the 13th he had 2 small blood clots and one a little larger in his mouth that was found a little while later that was wiped out of his mouth. His Red blood count was 6.8, he needed 4 units of blood.

He had blood in his urine after the third blood transfusion. Has this happened to anyone else?

Dr. Skelly is recommending that Dacogen be started next Monday Febraury 18th. Apparently that is the only drug treatment that the office performs.

After reading the article on the internet:

http://investorvillage.com/smbd.asp?mb=341&mid=3991671&pt=msg

I am inclined to think that Vidaza might be the better way to go.

I feel overwhelmed with the information on MDS. I have spent a lot of time researching on the internet. Any helpful information and suggestions would be deeply appreciated.

Thanks,

[californiamom]

Hello,
I understand where you are, it’s all overwhelming at the beginning, but it’s good that you went to a center of excellance. I can tell you from my dad’s experience he did so well on the Vidaza and the fact that it can now be intravenious is much better. The only complaints my dad had from the Vidaza was the injections site soreness (this was before the intravenious) and he had some diaharia. His counts all went back up and he had a productive time. However his doctor thought he could be taken off of the drug since his counts where so good, so I would recommend not taking him off if it helps. As for the Dacogen he took this once and it plummeted his counts and they never came back up, he eventually had AML. You might want to read other posts that talk about Dacogen, but as for my dad’s situation he did very well on the Vidaza.
Good luck with your dad and his treatment, he will be in my thoughts.
Kirsten

[Russ P.]

Zeke, I read the internet article you posted and just want to add that the disease is so varied and the individual’s response to different treatments is all over the lot. No one seems able to predict who will be better on one or the other hypomethylating agent. Also note that the FDA approved dacogen treatment schedule is not what is recommended by MD Anderson. Am surprised that your dad’s clinic only offers the one choice. I think it’s important to know why only dacogen is recommended. I have had AML since Jan. 2007 and was on Vidaza + an HDAC inhibitor for 9 months. My WBC was increasing so stopped the Vidaza and I’m holding my own now with Dacogen. Hopefully your doc’s decision is based on information other than that’s all they have. Best wishes and prayers for your Dad.
Russ

[eve]

hi zeke

my father occasionally had blood in his urine – sometimes it was caused by a urinary tract infection and sometimes it was caused by kidney stones – dad was on vidaza and it really helped keep his transfusion needs to a minimum

if you have another questions i can help you with feel free to contact me

good luck
eve

[eve]

oops

if you have any other questions is what i meant to say

[jaxem]

zeke
read your post & the investor info; copies the article to my wife’s hematologist. tough article to get through but I came away with a conclusion that both are equally effective & safe but since the vidaza can be used for a longer time, it might be better to use for overall survival. I have found through reading on this Forum and elsewhere that if a chemo beats back the disease, stay with it, else, change it. I am shocked that your dad’s institution only uses dacogen. So much for “Centers for Excellence” for which I’ve always had reservations. I’d seek a 2nd opinion. You need to find a facility that can move easily between different chemo treatments.

[Zeke]

Jaxem,

Center of excellence stated take your pick. Local institution said we use Dacogen. I will find out more about the only using dacogen as I agree that one needs to move easily between chemical treatments. I am trying to get my parents to consider switching to another doctor.

Eve,

Thanks for the idea on the kidney stones.

Thanks to all that replied with helpful information and also your prayers.

Bless you,

[choijk]

Zeke,
My father too is transfusion dependent. This means that he receives rbc every two weeks and receives 1 to 2 units each time.

Although my father has not told me of urine in his blood he did have blood in his stool while on revlimid which is another type of chemotherapy. From what the nurses at the infusion center has told me, if there is blood in the urine, u must bring it up to the doctor.

My father too will be beginning vidaza in March through IV. He was scheduled to start on feb but the chemo did not arrive.

I wish u and ur father all the best. Please keep us updated here. I’ve learned a lot on this forum and there are many knowledgeable people that will help u along the way sort out the information.

I will share my fathers expriences once he begins.

God bless to all

[Mary4Mike]

I just had a question for those of you who have posted on this thread. Is having 8 and 9 units of blood at a time an awful lot? I don’t know why, but I thought that 3 was the limit at a time. Also, Zeke, did they give your dad Lasix along with the transfusions? When my husband has been given 3 units of blood, they gave him Lasix because of the extra fluid load caused by the blood. This much blood at one time may have put a load on your dad’s kidneys, hence, the blood in the urine….does this make sense to anyone else or am I off base here? Just asking.

One other thing…..if I recall correctly, I believe that I read on the MD Anderson site about their Dacogen protocols, trials, etc. that they recommend using Dacogen as long as there is a good response. I don’t remember them mentioning any type of cycle limits. Does anyone else recall this? I will go back and look that up to be sure.

I wish the best for your dad, Zeke. Please keep us informed on what course he takes and how he does.

As always, my prayers are for all of us here.

[eve]

hi mary

my dad was never given more than 2 units at a time – after the 2 units they would give the blood time to settle in do a cbc and see if he needs more blood – the only time he needed more than 2 units was when he was hospitalized with an infection – at that time he got 4 units, but it was spaced over 2 1/2 days

eve

[Zeke]

Mary4Mike,

He starts Dacogen Monday morning Feb. 18th, 5 days straight. I do not know the dosage yet. I do not think he was given Lasix, will check on this.

The amount of units of transfusions seem high to me. He may need to have transfusions on a weekly basis rather than waiting 3 weeks. Also, this would make sense that the load on his kidneys would be high causing the blood in urine.

His last blood transfusion was 4 units which is lower. I am hoping that the Dacogen will reduce or eliminate the blood transfusions due to possibility of iron overload. Also, I am very concerned about the high number of blasts.

Thanks for the responses.

[Zeke]

He was given Lasix with his blood transfusions.

[choijk]

Mary,
I think you are right. 9 units of rbc’s is a lot at one time. I can be completely wrong and probably am, but for some reason, I do recall reading somewhere that that too many blood transfusions at one time is harmful because it causes a person’s body to go to shock. (?) Again, I’m probably wrong…. I’ll try to find something on the Internet. If successful, I will post on this thread.

[choijk]

COMPLICATIONS OF BLOOD TRANSFUSIONS

“The symptoms of most of the reactions that occur during or soon after
transfusion are similar. These include the development of a fever, chills,
nausea, pain at the site of the transfusion (arm vein) or in the back,
shortness of breath, a drop in blood pressure, passing dark or red urine, or a
skin rash. Any patient noticing any change in his or her condition during a
transfusion, however slight it may seem, should alert the nursing staff
promptly. Serious complications can be prevented by early recognition of a
reaction, stopping the transfusion and limiting the amount of blood given.”

http://www.leukemia-lymphoma.org/attachments/National/br_1144786293.pdf

I found this on page 20

[Zeke]

The most units of blood that my Dad has been given is 4 units of blood in one day. He has been in the hospital for multiple days on the blood transfusions.

[Author]

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