Please help me i dont know how to help my father

[Birgitta-A]

Dear Ziad,
Several studies have showed that Neupogen and similar drugs don't increase the risk for leukemia or increased blast cells:
http://www.ncbi.nlm.nih.gov/pubmed/21900223

I have been taking Neupogen mostly 2 injections/week from Sept 2007 to Nov 2011 without increased blast cells in blood or bone marrow. For the moment I don't need Neupogen since I have responded well to Thalidomide.
Kind regards
Birgitta-A

[ziad adore my father]

Dear Birgitta,

i dont know what to do for my father, he did not accept to raise my dad's ANC through Neupogen claiming that that drug may increase his blast, and on the other hand his ANC reached toda the 9 !!!!!! the minimum should be 1500 and his got today nine what to do???? we still at the hospital since 4 day with fever oscillating between 37.5 and 8.5c , and they did not accepted to leave hospital with high fever, today morning there was no fever, and once he got the blood transfusion the fever became 38.7c till now....
dad's 4th cycle of Vidaza should be in 3/4/2012 and we should be at home those days before treatment, and it seems that will will start Vidaza before going home

is it right to give him vidaza with such lowww ANC?

PS: blood transfused does not retaining more than 5 to 6 days in dad's body and platelets also same....when will vidaza work??? when we can see any sign that it will work??
i see that dad is getting worse and worse day after day...its so hard....so hard to see dad suffering...

[Birgitta-A]

Dear Ziad,
You know I think you are right about waiting with Vidaza when your father hardly has any neutrophils at all. As you have seen before they recommend that Vidaza should not be given if the neutrophils not have increased: "If a >25% increase above the nadir (lowesr value) is not seen by day 28, counts should be reassessed every 7 days."http://www.vidaza.com/pdf/PI_FINAL.pdf

There are patients that have responded after 3 cycles of Vidaza but most clinics try 6 cycles before they decide that the drug isn't working. a little more than 50% of the patients respond.
Kind regards
Birgitta-A

[ziad adore my father]

Dear Friends;

this is the time for the fourth cycle of VIDAZA of my Dear father, he is somehow stable, he use transfusion for blood and platelets every 10 days.

My question is Why Blasts in peripheral blood are increasing day by day (15% - 19% - 22% - 28%....) every time just before we start the new cycle??


What does it mean Blasts in peripheral blood? does it mean that his case is declining rapidly without any benefit from VIDAZA?

Our hematologist stoped the neupogen, claiming that it may increasing blasts, and now his ANC is too too low like 10 and even though the blasts are still climbing.

PS: once we start VIDAZA blasts start decreasing gradually before its getting up again in 25 days. We know that MDS has been transformed to AML lately but i want to be sure that his hematologist is on the right way for the treatment of my father.

there is no new symptoms...tks god there is no hemolysis due lot of transfusion, and he is taking IVIG each month for his neuropathy (CIDP) case, last month he took double dose (140g of IVIG)

Increasing Blasts are scaring me...i want the best treatment for my father i dont want to let the doctor to commit any mistake....i believe in you Dear friends please help me.

Best regard

ziad.

[Sally C]

Dear Ziad,
I don't know enough about all this to answer any of your questions. All I want to say is I have kept up with your posts and your Father is a very blessed man to have someone who loves him as much as you obviously do. Whatever the future holds just know that you are doing everything you can medically to help him but also you are giving him the greatest gift of all - your love.
I wish you and your Father the best.
Sally

[Birgitta-A]

Dear Ziad,
Increasing blast cells in bone marrow or blood means - as you have understood - that the disease is progressing. Vidaza seems not to be so effective yet and we don't know if more cycles will have better effect.

If I was in your father's situation I should not dare to receive a fourth cycle of Vidaza with so low neutrophils without protection from Neupogen or a similar drug.

There are other drugs for AML but they are much stronger than Vidaza and can give severe adverse reactions with very low counts.
Kind regards
Birgitta-A

[ziad adore my father]

Dear all,
Just to refresh memory about my father (83 years old) history; he is already an old CIDP (peripheral neuropathy) patient since 2003, and 10 month ago we discover that he had the worst desease ever MDS RAEB-2 which transformed to AML in very very quiqly in 2 months. Our hemathologist decided to start VIDAZA which as he said is the only choice for him since he is an old patient, and he has a history of neuropathy and take IVIG every month since 2003.

Dad is now in his 5th cycle of VIDAZA, we are now in the hospital, on the oncology floor, today is his 4th day injection.
Briefly he is highly neutropenic, with ANC zero since one month, and his hematologist has stoped the neupogen drug for a reason i realy dont understand; he always say that in his case neupogen may increase blasts and it will make his AML get worse.
Concerning his blood counts:
WBC: never go up above 1000.
Hemoglobin: oscillating Between 7 and 10, weekly he get transfusion to raise it to 10, and at each end of week his hemoglobin return to 7.3
ANC: almost always zero, sometime it goes up to 20.
Platelets: also he needs every week one donor, it goes up to 90.000 and at the end of the day it go back 20.000.

Concerning fever:
We can predict fever every month 5days before the new cycle of vidaza, we admit him due fever , they take for him blood and urine for culture, usualy nothing appear in culture, they give him a wide range antibiotics like TAZOCIN, and fever goes by itself, than we start vidaza right after (7 days 140 mg|daily). So each month we stay in hospital 13 days, its so hard for him and
for us (me mom and dad).


My question Dear friends:
1- when i ask our doctor why he is not allowing neupogen to raise ANC, he refuse it strictly, and he say it may worsen his case
2- when i ask him if vidaza will work and when it will work? He say that vidaza may be working now and his stability for one week transfusion shows that vidaza is working, at his age people does not live more than 4 months

Honestly friends, i dont want to loose dad i love him very much, plz tell me if our doc. Is working right? I want to reach a level which dad be transfusion independent at least for 1 month.....so why he is taking Vidaza, why he is taking vidaza's side effects if it will never make him better whyyy?

Sorry for my bad english, and thats my 8th day in hospital next to my dad, im depressed hopeless need some supportive words other than our doc. Optimistic words.
Thank you
Ziad mohsen
Sincerly yours

[Birgitta-A]

Dear Ziad,
Your father must be strong - though his counts are low - since he has been able to continue the Vidaza treatment. Good that Tacozin and other antibiotics have effect on his fever. He is getting good care with blood and platelet txs.

Question 1: I have already sent this abstract about Neupogen and similar drugs http://www.ncbi.nlm.nih.gov/pubmed/21900223. Give it to your doctor and ask what he thinks about this info.

Question 2: Most doctors evaluate the effect of Vidaza after 6 cycles. It is common that you have to wait for the response. I can't understand how doctors can inform about how many months we are going to live - nobody knows that. That kind of info will only lead to that the patient and his beloved ones loose hope.

You are very brave and your support important for your father.
Kind regards
Birgitta-A

[usaf1125]

Ziad, I wish I could help you. I don't believe MDS is like any other condition. It affects everyone differently, Iv'e had it for 9 years and the only thing that stays constant, is my need for blood, I'm up to 292 units, my doctor thinks it may be a record. I can tell by your writing that you love your father very much. My Father died from Bone Cancer,it was not easy watching him go. I understand what you are going through. Words don't mean much at this point, but I know what it was like with my Father, Ziad I know it's not easy, prepare your self for the ending. I wish I could help you, may God's blessing come to him and you.

[ziad adore my father]

Dad got a septic shock he is in ICU knowww im passing in a very hard time goddd keep him alive pleaze

[Birgitta-A]

Dear Ziad,
How sad that your beloved father has got a septic shock. We know that you have supported him in every possible way and can only hope that he will get effective treatment for the infection.
Warm regards
Birgitta-A